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newly diagnosed TNBC

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Category: TNBC Forums
Forum Name: Welcome New Members
Forum Description: A place to introduce yourself to our community
URL: http://forum.tnbcfoundation.org/forum_posts.asp?TID=13549
Printed Date: Dec 11 2019 at 8:41am
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Topic: newly diagnosed TNBC
Posted By: Laurarev
Subject: newly diagnosed TNBC
Date Posted: Jun 16 2019 at 9:16am
Good morning everyone  my name is Laura. I was recently diagnosed with TNBC.

 I am a 46 year old, single mother of a 13 yr old boy and 11 yr old girl. I had a clear ultrasound, mammo, and MR in jan 2019.  Two months later I felt what seemed like a bruise on my right breast. I looked for a black and blue mark but saw nothing. I waited a couple of weeks for it to feel better, but it still felt like a bruise. Within about 3 weeks I could feel  a small lump where the bruised feeling was. I called my OB and he said I most likely had nothing to worry about as I just recently had clear testing in January and breast cancer doesnít hurt. He said it was most likely a clogged milk duct or a cyst and to give it a little time to see if it goes away. I am an elementary school teacher and I was planning a trip to Florida for spring break. He told me there was no rush to get it checked and to go on vacation and we would do a diagnostic ultrasound when I returned. 

Well I had the ultrasound on May 13, 2019 and Iíve been on this roller coaster ride since then. On May 21 I went back for a needle biopsy. The doctor called two days later to tell me it was cancer. It was Memorial Day weekend so I wasnít able to meet with a surgeon until 10 days later who informed me that I had TNBC. I had never even heard of this. 

My sister had stage 0 estrogen positive breast cancer two years ago and is doing great, thank God. I have been to many appointments over the past two weeks, I feel like itís been two years. I am being told this cancer is very different from hers in that mine is ďrare and aggressiveĒ the tumor is small measuring 13 mm, but the proliferation rate is high at 67%. The surgeon and oncologist have decided I will do a lumpectomy first on June 25 followed by ACT chemo (maybe one more thing in addition to that... not sure what it was called) and then radiation. We will not know until surgery if it is in the lymph nodes, but theyíre thinking itís not. 🙏🏻 I am very scared to say the least. 

My maternal grandmother also had breast cancer in her 40ís but she was in remission for 25 years. My sister had the myriad BRCA test and was negative. Sloan Kettering is doing an impact test on me which will look for 89 mutations. 

Does anyone know of a specific diet we TNBC patients should eat. Everything on the internet is so confusing and it seems like there are foods we should or shouldnít be eating that differ from the other types of breast cancer. For example, Iíve read that avocados, broccoli and salmon are not ok to eat. How can that be?? Iím so confused. I just want to be as healthy as possible as I begin the fight of my life. Iíve started juicing carrots, celery, turmeric, ginger, beets, and sweet potatoes. Do you know where I can find a list of foods specifically for TNBC. 

Also, any advice on how to tell the kids? I went through a very tumultuous divorce two years ago. The kids have been through so much already and I want to handle this as gently as possible. So sorry for the very lengthy post. Any advice would be so greatly appreciated. 

Laura 



Replies:
Posted By: 123Donna
Date Posted: Jun 16 2019 at 7:35pm
Hi Laura

I'm so sorry you are dealing with this diagnosis.  It's very scary to hear those words and see how quickly your life can change.  The period from diagnosis until you begin treatment is the worst.  I'm sorry your doctor said cancer doesn't hurt.  There are quite a few members who will tell you this is exactly how they found their cancer.  The best advice is if it doesn't feel normal, get it checked out.  I'm glad Sloan Kettering is doing an extensive genetic test on you.  Many people only think the BRCA genes are associated with breast cancer, when that's not true.  They are finding many more genes connected with breast cancer so a full gene panel will help you identify if there is a genetic connection. 

Can you ask your oncologist office if there is a social worker you can talk to?  They may have some age appropriate advice for speaking with your children.  Other members with children similar age might be able to share how they broke the information.  My children were in college so I was able to talk to them as an adult and be very honest with the situation.

https://www.nccn.org/patients/guidelines/breast-invasive/index.html" rel="nofollow - https://www.nccn.org/patients/guidelines/breast-invasive/index.html


-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: Marymom
Date Posted: Jun 16 2019 at 8:06pm
Hello,

I am sorry you are joining this site.  But, it is a good place for information, hope and encouragement.  I also went to Sloan...I was diagnosed December 2017 and had a lumpectomy, 4 ac and 12 taxol and 4 weeks of radiation.  My tumor was 1.6 cm and no nodes involved.  My only side effect from chemo other than hair loss was being very tired.  I slept a lot.  

So, you are asking about food.  My doctor suggests no meat.  I tried that...but the beans and carbs were keeping weight on me.  So, I do a little bit of organic chicken each day and I have heard the mushrooms are good for you.  I marinate and cook assorted mushrooms and enjoy them every day.  I avoid sugar as well. I do not eat cheese, drink alcohol or use milk. There is a good book out there, that you can get from the library by Patricia pritjatel ( I hope I spelled that right)  ďSurviving triple negativeĒ and it was helpful.  

Stay positive, it is scary in the beginning...a lot of important decisions and you can get overwhelmed.  But, I feel great and I read a lot and have learned a lot.  Stay strong, read and inform yourself and sloan has nutritionists and intergrative oncologists too.  Tap into those resources.

I will keep you in my prayers.


Posted By: Laurarev
Date Posted: Jun 16 2019 at 9:19pm
Thank you Marymom. I am going to look into purchasing that book! I have been reading as much as I can on the internet, but not sure if Iím getting all accurate information. I also heard that mushroom are good, and not to eat meat or dairy (and of course, no sugar) 
I am meeting with a social worker at Sloan the  day before my surgery when I go to get the seed and the dye. I will inquire then about a nutritionist. 
Thank you so much for your reply
Laura 


Posted By: Laurarev
Date Posted: Jun 16 2019 at 9:30pm
I am going to meet with a social worker at Sloan the day before my surgery next Monday. I would like to talk to the kids this Friday after their last day of school, so Iím going to have to see if I can ask the oncologist this Wednesday if he can set me up with a social worker at his hospital (I am doing my chemo at a more local hospital than my surgery)  I would like to get some advice so they arenít scared. 
Thanks for your reply Donna:)


Posted By: Danzig482
Date Posted: Jun 16 2019 at 10:24pm
Laurarev- I couldnít help but laugh at your Ďhow can that beí comment. Iíve been researching myself stupid since Wednesday when they told me Iím TNBC.  The one thing I thought I could control while I play this waiting game with doctors and insurance, with my diet. I had the exact same reaction 😂😂. It appears room temp water and wood chips are the only thing that havenít been listed as bad for me at this point 🤢


Posted By: Laurarev
Date Posted: Jun 17 2019 at 11:25pm
Danzig482-I know! This is crazy. What the heck are we supposed to eat?


Posted By: Danzig482
Date Posted: Jun 17 2019 at 11:40pm
sawdust and luke warm tap water, in moderation 🤷‍♀️


Posted By: 123Donna
Date Posted: Jun 18 2019 at 8:03am
Have you had your Vitamin D level checked?  Most of us found out we were deficient at the time of diagnosis. 

http://forum.tnbcfoundation.org/vitamin-d3_topic5338_page45.html" rel="nofollow - http://forum.tnbcfoundation.org/vitamin-d3_topic5338_page45.html


-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: Georgia1965
Date Posted: Jun 18 2019 at 8:38am
Hi Laura, 
Just returning to this forum after a couple of years break. Just read your posts and was hoping to be of some small help. 
I was 46 too at time of diagnosis. TNBC, right side, 2cm tumour, grade 3,  no node involvement. I had lumpectomy, dose dense chemo and radiation. Just coming up to 7 years with no recurrence. Mammogram next week just to be sure! 

With regards to how best to tell children. At the time mine were 24, 22 and 7 years old. I found telling them ( and everyone else for that matter!) very difficult as you are trying to understand it all yourself, let alone frame it all for so many different people. 

My biggest concern was telling my 7 year old. The best advice I received was from my Breast cancer nurse. She advised me to tell him before treatment started, give as much information as you think he needs at the time. She advised that young children often blame themselves when a parent becomes sick. She was so right! The first thing my 7 year old said was Ďdid I do this to you mummy, did I hurt you when I jumped on you?í. I reassured him that mummies get sick sometimes and itís no ones fault. 

This nurse gave me a lovely book to read to my youngest called ĎThe Year of the Pale Sunflowerí as itís designed to assist you in telling children about breast cancer and possible treatments. It was a little too old for him but may be perfect for your children. 

Try not to read too much on the internet except for reputable sites and sources. I found this forum to be amongst the best and very reassuring. 

I could never imagine being 7 years post treatment back in that awful first month, but here I am! Take one day at a time was also good advice I received. 

My youngest is now 14, he remembers quite a bit from that year of treatment, we still talk about it and I remind him how brave and helpful he was for such a little guy! 

Best wishes for the coming weeks, this too shall pass. 
Donna



-------------
dx 25/05/12 @ 46yrs TNBC 2cm Tumour, Grade 3, Lumpectomy 0/5 nodes, DD AC & Other Chemo, Radiation


Posted By: Laurarev
Date Posted: Jun 18 2019 at 5:32pm
as a matter of fact I had bloodwork done about a week before I even knew I was going to need a biopsy and it did show that my vitamin d levels were low 


Posted By: Laurarev
Date Posted: Jun 18 2019 at 5:46pm
thank you for your post Donna 
First and foremost, congratulations on 7 years without recurrence. That is fantastic! It certainly does give me hope. 

It sounds like your order of treatment was the same as mine is going to be. Lumpectomy first, followed by chemo then radiation. What does ďdose dense chemoĒ mean? How long would you say it was from diagnosis til end of treatment? My surgical nurse said to figure about a year. 

Yes, I  am worried about how the kids are going to take the news. to say the least. I am going to try to minimize it as much as possible, but yet I will be telling them I have cancer (still feels so weird to even type it) and that I will be taking medicine called chemotherapy that may make me nauseous and tired. I am  definitely going to look into that book you mentioned. Thank you for the suggestion. 

I am going to try not to look at the internet too much. I am so glad I stumbled upon this forum. I agree that it is very helpful to discuss TNBC with real people in terms I can actually understand. I was really worried about what I should and shouldnt be eating, but I was driving myself crazy looking up so many conflicting studies on the internet. 

This too shall pass, you are correct! I am a fighter and I plan on giving this ďfightĒ everything Iíve got. I have two beautiful children depending on me, and I plan on sticking around for a VERY long time! 

Thsn you for your support:)


Posted By: 123Donna
Date Posted: Jun 18 2019 at 7:36pm
Laura,

I'm glad you found out what your Vit D levels are.  I didn't learn I was deficient until after finishing chemo the first time.  As one of my onc's told me, it's never good to be deficient!  It took a while of taking Vitamin D3 (you don't want D2) before I got my levels up, but they've stayed there ever since.  I take 5,000 ius of D3 a day.

Actually this month is my 10th anniversary from being diagnosed and having a bilateral mastectomy.  Sometimes it seems just like yesterday and other times, like a lifetime ago.  I've been in remission from the recurrence for 8 years now and like to think it gives others hope especially when the recurrence could not be surgically removed.  All I had was chemo and radiation to try and stop it.

Regarding the timing, usually you start chemo within a few weeks of healing from the surgery.  The chemo A/C is often given every 3 weeks x 4 cycles, then Taxol is given dose dense (meaning more frequently).  Taxol usually lasts about 12 more weeks.  There are some who get it weekly x 12 and others every 2 weeks.  Then there is usually a few weeks healing from chemo then radiation. 

You may be surprised how your kids respond.  They are stronger than you realize and will rally around you to be there for you.  Sure they will be scared, but reassure them you are a fighter and they are the reason you are fighting so hard!

Don't worry too much about what you eat.  Try to eat healthy and stay active if you can.  Some days walking up a flight of stairs felt like a marathon.  During chemo your body will let you know what you can handle.  The first time it tore my stomach up that all I wanted to eat is what I call white food - vanilla yogurt, turkey, applesauce, bread.  Spicy foods, coffee, even peaches, tore my mouth and stomach up.  They will give you some good anti-nausea medicine.  I can honestly say I never got nauseous from chemo.  I know others have, so if you are having any symptom, call the chemo nurse and they'll try to help you or call in a script to alleviate the symptom. 

Keep us posted,

Donna


-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: Georgia1965
Date Posted: Jun 18 2019 at 8:21pm
Hi Laura, 
As Donna (nice to see another Donna! 😀) mentioned, dose dense means more frequent doses. Because of my particular circumstances (grade 3 TNBC and size of tumour etc) they offered me the AC chemotherapy component more frequently than the regular 3 weekly dose. I had it every two weeks instead. This was particularly tough but I was advised it would increase my chances a little ( just 2-3%) of a better outcome. Like you I was prepared to do whatever it takes. Your chemo will be tailored to your circumstances. I live in Australia but think there are standard protocols internationally. 

Another thing I did for my little one, as soon as I knew I would be having chemo, I talked to his teacher about my diagnosis. I asked her to keep a bit of an eye on his behaviour to see if he was coping ok with it all. I also took him shopping with me for hats and scarves and I started wearing them every now and then before I lost my hair. By the time I did he was used to the hats and scarves. With children I think if you are ok about it all, so are they. 

Sounds like you are adjusting to this news and these changes very very well! 

Depending upon your particular circumstances, early stage Breast cancer treatment takes approximately 9-12 months. Allow a year is good advice. Some days will go slow, some fly by. Bizarrely, my daughterís friendís mum was diagnosed at the exact same time, very similar diagnosis. So actually this helped me understand how common this disease is and I was able to worry less. 

Donít obsess about the food, eat healthily and eat what you feel like eating at the time. Like Donna I wasnít too nauseous with the chemo. See how you go each day, as each day will be different. 

Keep us posted! 
Donna 😊



-------------
dx 25/05/12 @ 46yrs TNBC 2cm Tumour, Grade 3, Lumpectomy 0/5 nodes, DD AC & Other Chemo, Radiation


Posted By: JKaiser424
Date Posted: Jun 19 2019 at 9:44am
Hi Laura,

I was diagnosed in December 2018 and have two young children ages 6 and 8. I also am being treated at Sloan. I did contact the social worker who helped me on how to tell them as well as provided me with resources. It was a huge help.  I was very honest with my kids and updated them after each appointment, that seemed to ease their worry a lot throughout. I tried to keep all talk as positive and hopeful as possible. I gave the heads up about me being tired and losing my hair but I did it in stages. The social worker informed me it would be many conversations along the way.

 I did 8 rounds of chemo (4-AC and 4 Taxol) every two weeks followed by lumpectomy and currently finishing out radiation. I was declared NED (no evidence of disease) as of April 30th! The beginning is the hardest part but I have found many great resources along the way. There is so much Hope and Positive with this journey. You just have to steer clear of the negative (no pun intended). 

I have been slowly adjusting my eating habits but as my oncologist advised, everything in moderation. 

You will be in my thoughts and prayers...you got this! 

Jess 


Posted By: Laurarev
Date Posted: Jun 19 2019 at 2:20pm
Hi Jess,

I am sorry to hear you have had to go through this ordeal as well.
    I just finished up an appointment with my oncologist. I also will be doing 16 weeks of chemo ( 4 rounds of ac followed by 4 rounds of taxol every other week).  How long after chemo ended did you start up radiation? And how long does radiation last? 

I met with the chemo nurses too. They said that they have yet to see someone with AC chemo keep their hair even when wresting the cold cap. Did you attempt to wear it? I really wanted to try it but they told me not to get my hopes up. Well that just sucks 😥 

I will try to stay as positive as I can through all of this. The oncologist  said there are three things I can do on my end.... stay positive, walk or exercise 30 min a day (even if I cry through it) and get some vitamin d through sunlight every day! 
 
Congratulations on being declared NED!!! That is fantastic news!!! 

You are in my thoughts and prayers as well:)) 

Laura 



Posted By: JKaiser424
Date Posted: Jun 19 2019 at 2:52pm
Hi Laura,

Chemo ended for me on April 5th. I had a lumpectomy on April 30th. I started radiation on June 3rd. I had a few appointments prior to starting radiation (scans and measurements had to be done). My understanding is it is anywhere from 3-4 weeks after surgery before radiation starts to let body heal and for bloodcounts to come up.

I did not attempt the cold cap. I decided to shave my head. I am a bit of a control freak so I wanted to take control of the situation in any way that I could. It was very liberating and I actually liked the way I looked with it. This process is very individual and what works for one may not work for another so follow your gut and what you are most comfortable with. If you want to try the cold cap, go for it! 

I have been slowly adjusting my eating habits as they werenít great prior to this but it is a gradual process. The walking every day has truly helped me.

There are good and bad days throughout this. It is okay to not be okay somedays...lean on others for support and accept help wherever you can. 

The TNBC community is supportive and inspiring! Reach out anytime! 

Jess 



Posted By: Danzig482
Date Posted: Jun 21 2019 at 5:32am
Donna in reference to the chemo cycles you mentioned here - do you have any info or even personal opinion regarding the taxol every week vs every 3 weeks?

Also same question on carbo, cons of using. I was recommended to do either ac 8 weeks taxol 12. Or taxol and carbo 12 weeks then ac 8.

Think Iíve finally wore myself out researching so I can be prepared at appts. This recommendation was by the jh onc but the surgeon (and onc) suggested I do chemo at home for safety of being established at home if there is a complication (to keep me out of Er with god knows who on staff).
So now Iím thinking I will just like or pass out (kidding) when I see the onc here and they tell me something completely different. 

But assuming I chose one of the 2 above options I donít know if there are different strengths of those drugs to not overload the heart etc unique to each patient or its a one size fits all. Also have no clue where to begin making an intelligent choice on whether to try carbo. Like I said Iím. It sure ifnim just exhausted or the wealth of info is getting blurry. Maybe both 


Posted By: Laurarev
Date Posted: Jun 21 2019 at 6:37am
I think itís different for people who do chemo before surgery rather than surgery followed by chemo (which is what Iím doing) but I will try to help answer your question as I just asked something similar when I went to see my oncologist yesterday.  

I asked about the carbo for me personally. He said it is only offered to patients who receive chemo before surgery. He said it is tacked onto the taxol and it is a super extra boost and very good. 

As far as the strength and duration of the chemo. He said it is individualized according to the patients height and weight... and something about body mass something or other. I asked about the chemos effects on the heart. He said it can cause some heart issues  if given in high doses over 400. 

Usually the ac is given in 4 rounds every other week for 8 weeks. The taxol can be given the same way (4 rounds over the course of 8 weeks) or one round a week for 12 weeks. He said most people assume that the twelve weeks is more chemo and stronger but itís actually not. Itís (for lack of a better description) a diluted version by stretching it out over the 12 weeks. 

I also met with the chemo nurses. My oncologist had sent me over to them to get measured for the cold cap and discuss how to use it. They were really sweet and felt terrible telling me, but they said they have yet to see anyone undergoing ac chemo be able to keep their hair. Itís just such STRONG sh*t. They said a lot of young girls with beautiful long hair try it anyway, and after one round the hair is falling out in clumps anyway. I am pretty crushed about this, as I was really hopeful about keeping my hair  Anyway, I went to my stylist last night and cut 5 inches off of my hair... just to somewhat prepare myself for whatís to come 😥


Posted By: Kellyless
Date Posted: Jun 21 2019 at 11:42am
The chemo dose is based on what massive long term studies show has the best effectiveness killing our disease. Calculated to your size like most meds. Just out of curiosity I read about the evolution of chemo drugs way back in the beginning. Fascinating stuff, especially Taxol. Each drug kills cancer in a different way, in a different timeframe, a lot goes into the combos and doses. Then there's the science of the anti nausea drugs - without those many drug doses we do wouldn't be tolerable. They all work in a different way, most work on your brain signals not your stomach or digestive system. That's why you need to be proactive if you have severe nausea or vomiting - you should NOT be vomiting. That's a sign you need to try different drugs. it's crucial you follow instructions on doses - write it down, set alarms to take them on time. You want to stay ahead of the side effects, not try and beat them back once you're really sick. Resting and sleeping when your body says you need it is important. You re putting it thru extreme things, treat it kindly. Keep getting calories down is important too, and lots and lots of water. As your white blood count dwindles, remember that's your immune system. Avoid crowds, sick people and children if you can. A cold or a tummy bug can land you in the hospital and derail your chemo time line. As your red blood count drops you become anemic. Fatigue from anemia is a beotch, again rest as needed. You need iron to combat the anemia and the only way to get iron for chemo induced anemia is food. Research iron rich food and eat as much as you can stand. In the run up to surgery you should up your protein intake, it promotes healing. Discuss that with your surgeon. .I've yet to meet anyone that kept their hair during these chemo drugs we do. Once it starts falling out your hair feels......dead, crispy and uncomfortable. And it's EVERYWHERE. It feels like fine strands of hay poking your scalp. It was a relief to shave it off both times. Some insurance companies pay for a wig, a prosthetic hair device or something like that. Ask them, if they do your doctor will write you a wig prescription (insurance pays for fake boobs, prosthetic breasts, and the bras to hold them. I have 3 pair so far, all different. My husband like s to say, "put on your big boobies honey, I'm taking you out!" Lol. But I digress. ...). I mostly did scarves. The second time I mostly just went bald. I got an extraordinary amount of compliments on my bald head..folks were probably just being nice, but I decided to just take them at face value. Not shaving my legs for months was just plain awesome. My hair came back as thick and lush as ever, and quite fast after stopping chemo. Honestly, once you're in the midst of chemo, worry about your bald head fades away, it's just not important. I'd focus on ice baths for your hands and feet during Taxol. Neuropathy is a REAL problem and can be permanent. Way more important than the fur covering your head temporarily disappearing. 
Cancer has a way of showing you how to get your priorities straight. It's a terrible way to have to do that but my husband and I and Even our kids are very much benefiting from it now every day. My husband and I are having way more fun now in many many ways. Without a doubt you will be different after all this is over, it's up to you to figure out what that means. 


-------------
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!


Posted By: Laurarev
Date Posted: Jun 22 2019 at 7:36am
Kellyless- wow, thank you so much for your reply! You really gave some great advice and already put a lot into perspective for me. Iím sure I have so much more to learn as I go, but it helps so much to hear from people that are already way further along on this journey than I am. I can see how the hair on my head(that will eventually grow back) is trivial compared to a permanent situation like neuropathy. Do I only need to ice my hands and feet during the taxol, not the AC? I met someone yesterday that said she bought ďice pack socksĒ off of amazon. Would you recommend them? I didnít see anything similar for the hands. Do I just put them in a bowl of ice water? Or maybe hold two frozen water bottles? Also, did anyone add Ultima electrolyte replenisher to their water during chemo? 

I had the dreaded conversation with my children last night. They seemed to take the news much better than I had anticipated, although I donít think they will really understand everything until we are living through it. I explained that my surgery is this coming Tuesday and then I will heal for about a month until starting the medicine called chemo. I wonít start losing my hair until I start taking the chemo medicine. Well after lots and lots of talking and many questions they both seemed to be under the assumption that if we go to the beach NEXT week Iíll be bald. 🤷🏻‍♀️ My 11 year old daughter wants to come with me to pick out a wig (she thought we were going last night) and my 13 year old son seems very concerned that my appearance without eyebrows and eyelashes is really going to ďfreak him outĒ. As far as any fears of me dying or changing in any other way, they are both convinced I will be fine! Which is a good thing. 🙂 
 I had to warn them that Iíll be tired and maybe a little nauseous, and I told them it will be their job to keep bringing me water and saying ďmommy, you need to drink this!Ē They are ready to comply and happy to do it:) so overall, the conversation went well and a big worry has been lifted from me. It was very hard to keep this secret from them, but I wanted to wait until they finished school and also until I personally had processed everything and felt a little calmer. 


Posted By: Danzig482
Date Posted: Jun 22 2019 at 7:52am
laurarev thank you. I was told by jh it would be 8 weeks and 12 weeks . If I add carbo it reverses the order of the taxol but still 20 weeks. Hoping the local onc this week says the same cause Iím tired of making decisions 😂

Kellyless good reminders on diet and taking care of the body. Adding that to my must reread 20000 times list so I have my diet right before not just during. Agree 100% that the circumstances stink but the value of priorities being on track in an elite way improves life overall for the long haul 

I did not know that insurance paid for a wig ( still donít see myself wearing one) I did however learn yesterday that if you call the American Cancer Society they will give you a $70 coupon-amount may very depending on your ZIP Code but they will give you that towards the purchase of a wig on their website. And they do have some that are 70 or less or of course you can pay the difference. They also offer transportation and other benefits that are normal income based for those that need it. Iím fortunate not to need it but thought it was wonderful they do it without bias. Not everyone has family or friends that can take a day off or more every week for 5 months to help with appointments.


Posted By: Laurarev
Date Posted: Jun 22 2019 at 8:27am
Thanks for the info on the American Cancer Society. I did not know that!

As far as your comment about being tired of making decisions.....I feel the same way! My surgeon and oncologist kept telling me that I need to be part of this decision process. I felt like telling them both ďthis is all new to me. I have NO idea what to do! Please just decide together and tell me what needs to happen. This is not your first rodeos, but it it is mine. ď

Also, I have another question regarding work. I know a lot of you continued to work through most of this process. All of our jobs are very different and the demands of the work load vary. I was at a group meeting yesterday, where one of the girls said her cousin also had TNBC and was a 2nd grade teacher like me. She said that due to the physical ďenergy levelĒ demands of the job her cousin took an entire school year off. Financially I do not think Iíll be able to do that. I spoke with my HR person on Friday and she said the federal family leave act allows me to take 12 weeks. So when I do the math that gives me sept 2 (first day of school) til nov 22. My question is this.... i think I will be starting radiation late December early January. I donít know how long radiation is, but Iím guessing 5-6 weeks. I have no idea what the energy level is or how people feel during radiation. Is it easier than chemo? Do you think Iíll be ok teaching my 2nd grade class for 7 hours a day and then come home to be a single mom to the demanding schedules of an 11 and 13 yr old? Iím worried 


Posted By: Kellyless
Date Posted: Jun 22 2019 at 11:40am
The American Cancer society does workshops called "look good feel better" all over the place. it's for women in cancer treatment, I went both times. They go thru dealing with hair loss, makeup during chemo, etc. They usually have piles of wigs, scarves and hats that are free. They give each woman that attends a bag of cosmetics - really good stuff, Chanel, Almay, etc. And it's awesome being in a room full of women going thru the same thing.  http://lookgoodfeelbetter.org " rel="nofollow - http://lookgoodfeelbetter.org  ;
The main reason my advice always is to just let everyone in your world know about your diagnosis and treatment is that you can't do it alone. You'll be shocked at the outpouring of sympathy, understanding and help you will receive!! And you need to accept that help. Especially if you have kids!! 
I feel like it's been "story time with Kelly, tales from the frontline of Cancer treatment" this week. But I was helped tremendously by women that had been thru this both times, so just trying to pay it forward here. ..
The first time I was diagnosed I was 45, I had a high stress big responsibility job, my husband did too, my 14 yo son suffers from a chronic illness, my daughter was in college 3000 miles away and my mom had died of cancer 1 year prior. Of breast cancer. The parent group of my son's chosen extracurricular activity started a meal sign up for my family. I had chemo every 2 weeks - for the 10 nights starting the day of treatment, folks brought us dinner. 10 nights, 8 times - 80 meals from that alone! It was tremendous, I get teary just thinking about it. There's online free tools for organizing this - the person getting the meals fills out preferences, allergies etc. My son was way into it! Usually the parent showed up with their kid, so my son got to chat for a moment. Then there was the reveal - mostly home cooked meals, but take out from restaurants we like showed up as well. My husband and I kept it light and upbeat - and it was a HUGE help. I felt super icky about it in the beginning, but a woman I'd met online said TAKE THE HELP! (We had a secret family pact - if the food was awful we'd quietly get some takeout on our own but shhhhhhhh don't tell anybody :) friends would call during the day, they knew I was home alone, and ask what could They bring? On my crappier days it was milkshakes and smoothies. I mentioned to someone I needed more dangly earrings because man does being bald make your ears stand out! My girlfriend's started dropping lil super dangly spangly earrings in my mailbox 💜 strangers and friends alike made my time in the cancer treatment trenches so look much easier. Not to mention the moms that asked to include my son in all kinds of things. Movies, sleepovers, etc etc - distractions for him, peace and quiet for us. The point is, put it out there, what you and your family will be dealing with. Cancer, chemo, surgery, radiation over the next X months. You're a teacher - work with your principal on telling your students and sending home an explanatory note or email for the parents. Talk to your kids teachers, let them know it's ok to talk about it with your kids classmates. Tell the cub scout leader, the coaches of their teams. Send out a group email explaining what's going on. BCC everyone that's in your life. Post it on your social media of choice. You can't keep it secret forever anyway - you're going to be obviously a patient soon - so just get it over with and put it out there. When offers of help come take them!!! It makes others feel good to help you, it's a two way street. 
The first time I was lucky, my boss said I could work when I felt like it, don't when I didn't. And financially I could afford to do whatever. I took a full week off after every chemo, but honestly, I could've worked more. I worked full time thru radiation, it was a fast in and out for the treatment each day, most facilities offer very early morning and early evening treatment scheduled as well. The second time..... I quit my job, I'd felt overworked prior to my diagnosis this time, my husband was hugely supportive of me just quitting. I got really sick this time so working would've been tough. Everyone is different, every trip thru treatment is as well. Ask to speak to a social worker at your cancer facility now. Even if you don't need help right now, establish a relationship now, so you can ask for assistance easily later when you need it. The phrase I thought often was, "How do you eat an elephant? One spoonful at a time..." Cancer treatment is your elephant - trying to second guess everything at once is trying to eat your elephant in one bite. Just breathe. ... And dig in, one lil spoonful at a time....in a few months I swear it'll take you by surprise when the elephant is suddenly gone! Your Dr. Will pat you on the head, say "good job eating the whole elephant! Come back and see me every few months to see you if you have to eat another elephant, but I don't think you will. Live your elephant free life now! " . 
PS: I discovered grocery delivery this time. Loved it! You can get it for free by being flexible, sign up for a few stores and use their 1st delivery free, then they'll email you free delivery offers all the time. It works! Same with food delivery - there's oodles of different companies - they all offer first free. Grubhub, uber eats, door dash, postmates, caviar.....
For treatment costs not covered by insurance - copays, deductibles etc., Your facility should work with you. Mine called me outta the blue and asked if I wanted a monthly payment plan?  No interest,low monthly payments - sure, why not? If you can't pay anything now, put it off for a while. Usually they just don't care that much while you're in treatment. They're going to be billing your insurance for a ton of money (my last go round was a quarter million bucks - $250,000. I had complications but still. Dayum) They aren't going to refuse to give you any treatment because you owe a few thousand $$. 


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IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!


Posted By: 123Donna
Date Posted: Jun 22 2019 at 12:55pm
Laurarev,

If you have the flexibility, you may need some time off during the AC treatment cycle.  You may want to see how you feel during the first cycle and may only need to miss a few days or a week of each cycle or decide to take the full time off.  It affects every person differently.  Most say the Taxol treatment is much easier without the same side effects.  For me, I didn't find any issues with radiation and worked full time.  It is so much easier than chemo.  The biggest time drain was driving to the radiation appointment each day.  That took longer than the actual radiation.




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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: Laurarev
Date Posted: Jun 24 2019 at 6:43am
Thank you Kellyless for your reply!  You, along with all of the others on here, that have so much knowledge and share it so graciously with us ďnewbiesĒ! You  are appreciated more than you know! 
I am going into Sloan today for some pre surgery procedures   (surgery is tomorrow) and some scans. I am so worried this damn tumor in me has grown. It is so sore to the touch and now I am feeling pain in my armpit. Is a proliferation rate of 67% something I should be highly concerned about? Should they not have waited 4 weeks to take this out?? Could it now be in my lymph nodes???? 
I met with a friend yesterday who recently finished all of her chemo treatments. Granted, she didnít have ac... but she did have 16 rounds of taxol. She recommended that I definitely take cbd oil during treatment as well as receive infrared sauna sessions to reduce inflammation. She also said to only drink alkaline water (can be purchased at Trader Joeís) and to take a probiotic (refrigerated only and can be purchased at Deans market) Does anyone have any experience with these four things? 


Posted By: Laurarev
Date Posted: Jun 24 2019 at 6:49am
Thank you for your reply donna123! Fortunately I am a teacher and I have vacation time for the summer. So when I begin the ac treatment (which Iím thinking will be in about 3 weeks) I will still be home for summer break. Iím thinking ac will be August and September, so I am definitely planning on taking the month of September off. I am hoping to take off October and November as well. I will most likely go back to work in December and then start up radiation in January. My hope is that radiation is not as difficult, as you said. My primary concern is that they will be tired, and as a single mom of two young and very active children, it may be a bit challenging. But I have a wonderful support system and I know they will all help as much as they can. 


Posted By: 123Donna
Date Posted: Jun 24 2019 at 7:43am
Hi Laura,

It's good that you will be able to have the time off during treatment.  Fatigue is challenging and being able to rest will help you out during this period.  Regarding the proliferation rate, most of us diagnosed with TNBC are grade 3 and have a high KI-67.  It's a characteristic of TNBC. 

This is from Breastcancer.org:  Your pathology report may include information about the rate of cell growth ó what proportion of the cancer cells within the tumor are growing and dividing to form new cancer cells. A higher percentage suggests a faster-growing, more aggressive cancer, rather than a slower, ďlaid backĒ one. Tests that can measure the rate of growth include:

  • S-phase fraction: This number tells you what percentage of cells in the sample are in the process of copying their genetic information, or DNA. This S-phase, short for ďsynthesis phase,Ē happens just before a cell divides into two new cells. A result of less than 6% is considered low, 6-10% intermediate, and more than 10% is considered high.
  • Ki-67: Ki-67 is a protein in cells that increases as they prepare to divide into new cells. A staining process can measure the percentage of tumor cells that are positive for Ki-67. The more positive cells there are, the more quickly they are dividing and forming new cells. In breast cancer, a result of less than 10% is considered low, 10-20% borderline, and high if more than 20%




-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: Laurarev
Date Posted: Jun 24 2019 at 7:58am
Oh boy! That doesnít sound good. So do you think things have gotten really bad for me over theses past four weeks? 😱


Posted By: Monarch
Date Posted: Jun 24 2019 at 8:31am
Laura,

I am a newbie as well.  I was diagnosed this month.  Mine is a bit bigger and it has metted to the axillary node as well.  The thyroid also showed, and I will have that biopsied today.  The surgeon and oncologist think it might be another primary cancer and not breast cancer.  Either way, it is cancer.  However, if it is a breast cancer, it will put me into a Stage IV and I don't know what my path will be if that is the case.

I found a book while watching Joan Lunden on Youtube.  His name is Dr. Zembrowski and he is a chiropractor and has some nutrition training.  The name of his book is, "Rebuild". It is all about getting through chemo and radiation with diet to help your body.  He also covers exercise during treatment.

He is a survivor.  He had a 5 inch tumor in his chest.  He had much the same treatment that  we have for TNBC.  The doctors were not really helping him with his nutrition when his reoccurred.  So, he began researching everything.  I really like his approach to food and supplements.  It is simple.  It's not radical in the sense of a Dr. Terry Wahl's (autoimmune), but you definitely must make changes in your diet.  The biggest take away is NO sugar, no gluten, no soy and no diary (except protein isolate shakes).  

The sugar is the most important thing.  Cancer cells need glucose to proliferate.  If you make it abundant in your body, you are "feeding the beast", as I like to call it.  You can only get your sugar naturally from fruits and vegetables like, apples, carrots etc...
So, it was always tempting to grab those dips and chips or candy bars.  Now, I just pass everything up, and keep walking and repeating to myself, "don't feed the beast!"  I come out unscathed.  It is amazing the will power you have when it is life or death!

I hope this helps, and I am sorry about your diagnosis, but I am glad we found this site! I have already been helped so much from the senior members and those that have gone before me. 

Monarch  


Posted By: Kellyless
Date Posted: Jun 24 2019 at 12:26pm
Laurarev, my tumor the first time was sore and painful. It was a month between finding it and surgery, it was the same as yours with aggressiveness and KI - most of us are. The "growing" is most likely just you feeling it, obsessing over it (I did too). You can't know if you have it in your lymph nodes for sure until surgery. Mine was just a smidge, not a tumor, didn't change the appearance of the node. It might have shown on a PET scan, but insurance rarely covers a PET the first time you have cancer. The second time it was a lil over a month between diagnosis and chemo. I ended up with a PCR, so again that lag didn't matter. If there's any in your nodes, it's probably been there since before diagnosis. Remind me why they want surgery first with you? I'm sorry, I think you said but can't remember. 
CBD, special water, special diet etc - some of it may help YOU - either treating symptoms, or psychologically give you peace DOING something, but going into chemo, none of it matters really to the cancer whilst in treatment. Y'all are about to do very very agressive, bad ass cancer murdering chemo...YAY you! It's a bit of a rough ride, but lots of research shows that these drugs kill the crap out of our cancer. DO NOT add any vitamin, supplements or anything during treatment without prior approval from your doctor!!! Example: fish oil can prevent the chemo from working. Black Cohosh increases your hormone levels similar to taking hormones. This is not the time to start trying  a bunch of new over the counter stuff Aunt Susies manicurist says will help. There are some vitamins they'll allow - ASK. 
I got Really Sick the second time I did chemo. My cancer buddy (he's had cancer the same time as me twice) did as well, he called and said, "OMG you and I are idiots!!" Neither he nor I had smoked weed since high school. Didn't the first time we got chemo. He'd tried it. It was the magic bullet for both of us getting thru chemo this time. It treated several of my symptoms . We both cleared it with our doctors first. It's not legal here, I'm lucky to have friends and family in California, Colorado and Vegas that'll help a sister out. Everyone is different, you'll find your way once your in the thick of it.
And with diet.... Your cancer facility should have a nutritionist that specializes in cancer patients. I spoke with mine repeatedly thru both times. It's one helluva time to try and drastically change your diet. There's times in chemo that I was lucky to drink water and maybe a milk shake. When the anemia hit I was having steak and sauteed spinach for breakfast (when I could stand it.) You may get mouth sores, you get a weird taste in your mouth (it tastes like.......chemo. And metal) give yourself a break, wait til your through with chemo before you go on a rigorous diet. You need water and calories every day. If you do better than that YAY you had a good day :) 
I avoided mouth sores both times. I washed my mouth out with Biotene mouthwash morning and night and after every meal. I switched to a softer toothbrush and sensidyne toothpaste. Chemo attacks the cells in your mouth, so treat it gently. You want a No Alcohol mouthwash, like Biotene. 
If your anxiety is off the charts talk to your doctor. Same with sleeping issues and depression. There were times I needed a Xanax. Nights where I took Lunesta to sleep. Half way thru chemo the first time I went on low dose antidepressant, it was really helpful for about 4-5 months. Neulasta gave me intense bone pain - I took pain pills on the worst days. The 2nd time I was constipated (I have the constipation cure steps!! A sweet resident in the hospital told me). 
The point of all that is - EVERYONE is different! Only time will tell which if any side effects will be yours to deal with. And you need to be quick and proactive in dealing with them. Do not suffer in silence, you can cause yourself great harm not treating issues that arise. Be kind to yourself, both mentally and physically. Your goal is to get to the other side of treatment, on time and cancer free. Whatever it takes to get there, you and your highly trained medical team will figure it out. 


-------------
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!


Posted By: Laurarev
Date Posted: Jun 24 2019 at 4:58pm
Welcome Monarch! First and foremost, I am sorry to hear of your diagnosis. I will be adding you to my prayers. We are going to be fine! Yes, we have a long road ahead of us... but we canít quit now. We will rise to the occasion, and fight the crap out of this sh*t!!

Thank you for the nutrition suggestions. I will definitely be looking up the book Rebulid. It sounds like a good one! I also just recently found out that Joan lunden and robin Roberts are  triple negative. Iíve looked up a lot about their treatments. They both have such positive outlooks. 

Please keep us posted on how youíre doing. You are correct in saying we are lucky to have found this site. The senior members are wonderful and have a wealth of information!

Laura  


Posted By: Laurarev
Date Posted: Jun 24 2019 at 5:13pm
Thank you for your post! I am definitely going to buy the biotene! Iíve heard those mouth sores are the worst 
I just finished up with the seed and the lymph node mapping. Boy did that radioactive dye hurt going in!! The doctor said the tumor does not look like it grew too much, thank God. She did not look at the lymph nodes at all with the ultrasound wand. She said either way theyíre going to take out between 2-5 tomorrow. So fingers crossed really really tight that there is no node involvement.
I hear what your saying about all my special ďtricksĒ... alkaline water, infrared sauna, probiotic, cbd oil. Maybe it will make me feel better just to think Iím doing a little extra (even if itís all in my head) but I will check with the oncologist first, for sure!
I have heard that the chemo concoction that we get for this ďtriple threatĒ is quite a doozy! Well, I guess if weíre going to get chemo we might as well get the kick ass kind... 
I will talk to the nutritionist as well, but I know I am going to have to eat and keep my calorie count up no matter how I do it. Iím only 100 pounds so I canít affird to lose any weight. I know that sugar and dairy are big no noís, but if I need a milk shake every once in a while Iím not going to deny myself 
I agree, the goal is to get through this cancer free, and hopefully without any hiccups! 
I will be praying for you 🙏🏻❤️


Posted By: 123Donna
Date Posted: Jun 24 2019 at 7:52pm
It's always good advice to try and eat as healthy as you can, but understand while on chemo, you may end up eating what tastes good to you and gets you by during the treatment.  Trying to eat an anti-inflammatory diet is a great idea, if you can manage it.  I know many people think you have to cut out sugar, but that's a common misconception.  If cutting it out makes you feel good, then definitely do it. 

Reducing dietary sugar not the same

The scientists are keen to point out that reducing sugar in the diet would not lead to the anticancer effects that they showed in the study.

There is no proof that starving the body of sugar lowers a person's risk of developing cancer or that it improves the chances of survival should they be diagnosed with the disease.

There is an indirect link between reduced dietary sugar and lower cancer risk that comes through tackling  https://www.medicalnewstoday.com/info/obesity/how-much-should-i-weigh.php" rel="nofollow - obesity .

High intakes of dietary sugar raise the risk of obesity, which, in turn, raises the risk of cancer.

"A lot of people," says senior study author Leonard W. Seymour, a professor of gene therapies in the university's oncology department, "think that  https://www.medicalnewstoday.com/articles/161547.php" rel="nofollow - carbohydrates  are bad, but that's not the case ó we need them, and cutting out sugar won't cure cancer."

"Because cancer gobbles up glucose so quickly, the cells are very vulnerable to attack from a drug that targets the sugar pathway. The same effect cannot be achieved by eliminating sugar from your diet."

https://www.medicalnewstoday.com/articles/323857.php" rel="nofollow - https://www.medicalnewstoday.com/articles/323857.php

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DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: Laurarev
Date Posted: Jun 26 2019 at 2:22pm
Hi everyone... I am home recovering from my lumpectomy and lymph node removal. All went well! The doctor said only one node ďlit upĒ so only one was removed. Thatís good, right?? I know it still has to be sent to pathology for testing, but Iím really hoping for good results. What do you all think? Is it more likely the cancer is in my lymph nodes if she had to remove more than one  node? And if there is any in there, wonít the chemo take care of that? So now I have to wait and see when chemo will start. Iím assuming in about three weeks, but Iím really not sure. Does anyone know if I have to do any special exercises for my lymph node incision to heal properly? I heard something about climbing my hand up the wall like a ladder, but not sure if that applies to me. 
Also, I have a question about icing hands and feet during chemo to prevent neuropathy. Am I supposed to ice for the AC, the taxol, or both? And how long do I ice? Just while the bag of the chemo medicine is dripping into me, or the whole time Iím sitting  there? 



Posted By: Kellyless
Date Posted: Jun 26 2019 at 4:52pm
Do you have a drain from either surgical site? If so, you will have it for about a week usually, depending on the output. Do you have a post surgical appointment set for next week? I think you are to reduce activity for the first week, give your incisions some time to heal. Did they give you post surgery care instructions? Usually you have a lil packet of info. Trying to think back.... I seem to remember limiting the use on that side for a week until you have your first post surgery appointment. Get your drain out if you have one, incision  checked. Then they should advise you on excercises. If you've a drain, there's daily care for that. If not, checking your incisions for drainage, swelling, redness and heat. Take your temperature a few times a day. Today you're still benefiting from the drugs during surgery and numbing meds at your surgical sites. Do not over do - rest, eat and chill. Tomorrow you may be sore, I'vwe packs and pain meds are options if you need it. Did they tell you how long til they'll have your pathology results? 

-------------
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!


Posted By: Laurarev
Date Posted: Jun 26 2019 at 5:04pm
I donít have any drains. The surgical incisions have glue on the outside, but stitches inside. they told me I could shower today, which I did and everything seems ok. I didnít even think that the numbing medicine and pain meds from yesterday are still kicking in and I will probably be in more discomfort tomorrow when they wear off. They didnít tell me when the pathology reports  will be in and I donít go back to see the surgeon until July 11th 


Posted By: 123Donna
Date Posted: Jun 26 2019 at 6:44pm
Hi Laura,

I'm glad the surgery went well and you are on to the healing part.  Did they give you any instructions on post-surgery?  Usually they will tell you if you have any restrictions and recovery instructions (exercise, etc).  If not, I'd contact the surgeon's office and ask for guidance. 

"The doctor said only one node ďlit upĒ so only one was removed. Thatís good, right??"  I'm thinking it means that when they injected the dye into the tumor, it only drained to one sentinel node.  During the surgery, they remove the sentinel nodes, the nodes that first drained from the tumor.  It is a good sign and pathology will let you know if they found any cancer cells inside the node.  The good news is even if there were some cells, chemo and radiation will mop them up.

Ask your chemo nurses about the ice.  They can advise when best to use it to prevent neuropathy. 

Donna



-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: Laurarev
Date Posted: Jun 26 2019 at 8:20pm
Thanks for the reply Donna! They gave me two meds post op. One is a pain killer and the other one was described as a very strong type of Advil/anti inflammatory. The only restriction they gave me was not to lift anything over ten pounds for a week. They didnít tell me anything about any exercises.  
Iím glad you said if any cancer is in the node they took out it will be ďmopped upĒ with the chemo and radiation. Thatís what I was hoping!! I really donít want them to have to go in and take more nodes out. 
I will ask the chemo nurses about the ice. 


Posted By: Leahstuffle
Date Posted: Jun 27 2019 at 12:41am
Hey, Laura! I'm late to this party, but wanted to say congratulations on getting through the first big thing.
I worked through my treatment, taking the treatment day off and then the day my nausea drugs wore off, usually five days later. I took a shot called Sustol for nausea and never needed pills. It was a great relief for me.
I have small children and I am metastatic. My greatest recommendation for the upcoming year is to find a community to support you in the evenings. 
We have friends from church who take our boys in the afternoon and bring them home in pajamas ready to go to bed. Please let people make you dinners, or start stocking your freezer now.
I find that it is not the treatment itself that's hard, but the brutal day in/day out neverending appointments that make it difficult to enjoy the regular stuff in a day.

Another tip for neuropathy: B complex vitamins were recommended by my team, particularly B6! It's worth asking about. I took it before I started taxol. I have slight neuropathy that manifested as tinnitus. Go figure.


Posted By: Laurarev
Date Posted: Jun 28 2019 at 10:55am
Hey Leah... thanks for the reply! I have a group of friends who started a food chain for me and theyíre getting a cleaning lady to come in every other week, so thatís going to be a huge help. My sister and some friends have offered to take take the kids to and from activities and appointments. Iím planning on taking time off from work sept - nov.  I teach 2nd grade, and Iím just worried I wonít be able to give my students the best of me while Iím actively undergoing chemo. Iím hoping Iíll be ok during radiation (maybe just needing to take a couple days off here and there)
I have a list of things to talk to the oncologist about when i go on July 3rd. I will definitely add Vitamin B6 to the list.  I also want to ask about CBD oil, probiotics, alkaline water, and an at home portable infrared sauna. I wonder if anyone on here has purchased one of them. I saw some reasonably priced ones on amazon but not sure which one is good 🤷🏻‍♀️


Posted By: Kellyless
Date Posted: Jun 30 2019 at 12:24am
Swimming was my sanctuary during chemo. Just floating on the worst days was my jam. I had lots of bone pain from Neulasta and taxol, the water made me feel a lot better. The first time I went into the sudden menopause - chemopause - halfway thru. The hot flashes were awful. Most of my chemo was in the summer, so I was in the pool every day. I liked my bald head better when it had a lil tan on it. I used sunscreen, I didn't let it burn but it did tan. It started out so stark white, once it had a tan it looked more like a fashion choice if you just glanced at it 😁 tanned head and dangly earrings, not so bad. 

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IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!


Posted By: Laurarev
Date Posted: Jul 01 2019 at 8:22am
Your post put a big smile on my face! I can just picture the nice tan you had on your bald head and the beautiful earrings dangling down!! 😊😊😊
Well, I donít know for sure yet, but Iím assuming my chemo will start up pretty soon, so Iíll be a summer chemo girl too. I belong to a beach club with an Olympic size salt water pool (water pumped in from the ocean). As long as thereís not too much bacteria in that water, and itís not a health risk, Iíll be floating around in there as much as possible too!! 
Thanks for the tip!!
Laura 


Posted By: Laurarev
Date Posted: Jul 06 2019 at 2:09pm
Hi girls! I have an update. 
Results were put on my Sloan patient portal last night!! GOOD NEWS! the tumor was smaller than we thought. It was 9mm instead of 13mm.. so they take it as good news when it's under 1cm. It did NOT spread to my lymph nodes. They took 2 nodes out (I had originally thought they only took 1). All of the margins were cleared. They staged it at Stage 1b, grade 3, triple negative breast cancer. Not sure why itís 1b instead of 1a though. I thought the ďbĒ means that there IS node involvement. Anyway, looks like I will have the port put in by a surgeon on July 18th or 19th and then start chemo July 29.  Thank you for all of your support  and prayers! 


Posted By: Kellyless
Date Posted: Jul 06 2019 at 5:08pm
Congrats on getting the surgery behind you and the smaller size!  In 2018 the American Joint Committee on Cancer adjusted the staging for breast cancer to better align with the treatment recommendations - with Her2 + and TNBC at a higher stage because they are typically Grade 3 - and Grade 3 raising the stage in general as well.  So a 9mm ER/PR+ grade 1 would be a 1A, Her2+ or TNBC grade 3 would make it a 1B - thats what I seem to remember last year when they came out with the news?  It makes sense - if you'd had the garden variety non-agressive ER/PR+ 9mm you'd be getting radiation at this point most likely.  The need for that port and chemo bumps you to a B.  Kinda makes sense really.


-------------
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!


Posted By: Laurarev
Date Posted: Jul 06 2019 at 6:42pm
that makes sense!! Thank you for the explanation:))


Posted By: kirby
Date Posted: Jul 09 2019 at 10:02am
Laura, I am rarely on this site anymore. You'll see by my signature how long ago I was tx and my stats. I too was a single parent when dx. My daughters were 9 and 13. They seemed to take it all in stride. I think they take cues from you and how you are handling things. Although my daughters were "cancer familiar" as my mother had had ovarian so they were used to seeing bald. My older daughters response when I told them about my dx was "well, if you're going to have cancer, this is a better type to have." [ as opposed to ovarian....hell yes!] Both daughter wrote papers for some assignment when in high school about my tx. Oddly they told me they wrote it but never let me see it. I always wondered what their perspective would have been. 

My run partner has just finished tx for her2. She developed neuropathy in the last 6-8 weeks. She found acupuncture to be extremely helpful. I also swore by acupuncture during tx to keep my energy levels up. I worked thru tx but was able to adjust my hours. I needed/had to work. I am a self employed hairdresser. I would go from chemo directly to acupuncture. I've written details on this forum at some point. For my run partner...she had gotten to where she could barely walk and the acupuncture greatly diminished her symptoms. [she has had a full year of tx.] 

I found radiation a piece of cake after having chemo. I wasn't aware that there were side affects. The difficulty with radiation was in the scheduling for the convenience of my work. 

good luck to you. 

Kirby


ps, hello to all the familiar names. It's nice to check in once in a while and still see some of you here. 


-------------
kirby

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads


Posted By: Kellyless
Date Posted: Jul 09 2019 at 12:51pm
Wonderful to hear from you Kirby! So glad you and your daughters are doing well.
Our lil family of four, my husband, daughter and son are much more close after my two bouts of TNBC treatment. I always told them the truth, they definitely made me feel we were all in this together because of it.


-------------
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!


Posted By: mainsailset
Date Posted: Jul 09 2019 at 2:25pm
Hi Kirby, great to hear from you! I just had a call from my clinical trial rep for my annual checkin to see how I was doing so I was thinking of all the people I've known through the Tneg family. So glad you're doing well!

-------------
dx 7/08 TN 14x6.5x5.5 cm tumor

3 Lymph nodes involved, Taxol/Sunitab+AC, 5/09 dbl masectomy, path 2mm tumor removed, lymphs all clear, RAD 32 finished 9/11/09. 9/28 CT clear 10/18/10 CT clear


Posted By: 123Donna
Date Posted: Jul 09 2019 at 7:10pm
Hi Kirby!  So glad to hear from you.  You were so supportive to me when I was going through my two battles with TNBC.  We love hearing from long term survivors!

Donna


-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: Melanie
Date Posted: Jul 15 2019 at 11:30pm
Hi, 
Iím Mel. 42 from Australia and I have just been diagnosed with TNBC grade 3.  I had a 3.5cm lump removed and an enlarged lymph node removed. Margins have come back clear and my lymph node also. I have a 10 year old daughter. I have kept her completely in the loop. She has been coping well but perhaps a little touchy as she is adjusting to me getting fussed over a lot more than usual. Iím a registered nurse and tbh the hardest part strangely has been the medicalisation of my body and the triple negative really threw me. Iím about to start 6 months of chemo then radiation and I can see you guys are a wealth of knowledge. Thank you in advance. I found my lump on the flight to Morocco for a month long holiday and immediately knew it was not good. I had to have all my scans and biopsy in Morocco and then leg it back to Oz. It grew so quick. Lucky I did. Very daunting not speaking the language while having invasive tests done. 
Iím not looking forward to chemo but of course I will be fine. 
Mel 


Posted By: Laurarev
Date Posted: Jul 17 2019 at 4:18pm
Hi Mel,
Wow! Thatís crazy that you had to go through all that in Morocco. But thank God you knew something was wrong and you were able to catch it early! What chemo treatment are you about to start for 6 months?
I actually just went to a Sloan oncologist for a second opinion today.  I thought I was all set to start the AC-T on July 29th, but the Sloan oncologist seems to have a different idea Iím mind. She suggested I do the CMF chemo instead (for 6montha vs 4 months of the AC-T) She said it is gentler on the body without all the side effects that people get from the AC-T. Now Iím just completely confused! Do I want a ďgentlerĒ chemo? Donít I want the strongest stuff out there?  
Is anyone else familiar with this CMF? It is the first time itís been mentioned to me. Immediately following that appointment I had a scheduled appointment with my port surgeon (which Iíll be getting this Friday)  he is also a breast surgeon and did his residency at Sloan. He said in his humble opinion he strongly agrees with going with the ACT. He said if I were his wife he would be telling me that is the only option. It is the strongest chemo for TNBC and I am young and healthy so I will be ok with it. Does anyone know if the CMF and ACT are equally effective? 
Thanks!


Posted By: Melanie
Date Posted: Jul 17 2019 at 7:19pm
hi Laurarev, 
Far out I donít want options, I want to be told ďdo thisĒ, options at this point are so overwhelming. The first moment of relief for myself and my husband was when I saw my surgeon and I could give him control to take care of me and utilise all of his experience and skill. Which he did.  I have to do my planning on the 30th of this month and I will be told exactly which chemo I will be having. The breast cancer nurse has just told me 6 months. I presume you are in the US. I have never heard of Sloan but I can see a few mentions on here about it. In Australia we have public healthcare funded by the government so the treatment is organised by oncologists employed by the government and it is a bit more standardised I think, although you still have choice. I have been told because I am young and healthy that I will be hit hard with aggressive chemo and I think it sounds and will be crap but I donít want to have any regrets if it was to come back. I really want to go through this once in my life I guess. Itís a hard decision but I have found so far that itís the people like the breast sonographers etc who see this stuff everyday who give you the unbiased advice. They have no drug company alliances etc. Maybe the Port surgeon is good to listen to. 
Mel 


Posted By: 123Donna
Date Posted: Jul 17 2019 at 8:04pm
Originally posted by Laurarev Laurarev wrote:


Is anyone else familiar with this CMF? It is the first time itís been mentioned to me. Immediately following that appointment I had a scheduled appointment with my port surgeon (which Iíll be getting this Friday)  he is also a breast surgeon and did his residency at Sloan. He said in his humble opinion he strongly agrees with going with the ACT. He said if I were his wife he would be telling me that is the only option. It is the strongest chemo for TNBC and I am young and healthy so I will be ok with it. Does anyone know if the CMF and ACT are equally effective? 
Thanks!


Laurarev,

CMF is an older chemo regimen that was commonly used before AC-T became the norm.  Here are a few studies/links to consider:

Comparison of Adjuvant Regimens in Early-Stage Breast Cancer


Overall Survival

Overall, 24 trials were identified. Compared with sequential AC-T, TC (hazard ratio


= 0.93, 95% confidence interval [CI] = 0.62Ė1.40), platinum-containing regimens (HR = 0.93, 95% CI = 0.66Ė1.31), and concurrent ACT (HR = 1.03, 95% CI = 0.90Ė1.18) had a similar overall survival benefit, whereas overall survival was worse with CMF (HR = 1.56, 95% CI = 1.32Ė1.85), anthracycline alone (HR = 1.22, 95% CI = 1.10Ė1.37), and no adjuvant therapy (HR = 1.76, 95% CI = 1.40Ė2.21).

On meta-regression analysis adjusting for hormone receptor status, there were no significant differences in overall survival for sequential AC-T vs concurrent ACT, anthracycline alone, platinum-containing regimens, or TC, with CMF being associated with significantly poorer survival.

https://www.ascopost.com/News/33921" rel="nofollow - https://www.ascopost.com/News/33921


Adjuvant chemotherapy for HER2-negative breast cancer


REGIMEN SELECTION AND ADMINISTRATION

Choosing a regimen ó The choice of an adjuvant chemotherapy regimen depends both on baseline characteristics of the patient as well as the breast cancer. Considerations are discussed below.

General approach ó There is no single worldwide standard adjuvant chemotherapy regimen in the treatment of breast cancer, and the preferred regimens vary by prescribing clinician, institution, and/or geographic region. The following outlines our approach:

For most patients in whom chemotherapy is recommended, we prefer https://www.uptodate.com/contents/doxorubicin-conventional-drug-information?topicRef=788&source=see_link" rel="nofollow - doxorubicin and https://www.uptodate.com/contents/cyclophosphamide-drug-information?topicRef=788&source=see_link" rel="nofollow - cyclophosphamide (AC) followed by https://www.uptodate.com/contents/paclitaxel-conventional-drug-information?topicRef=788&source=see_link" rel="nofollow - paclitaxel (T), otherwise referred to as AC-T, administered on a dose-dense schedule ( https://www.uptodate.com/content-not-available" rel="nofollow - table 2 ) [ https://www.uptodate.com/contents/adjuvant-chemotherapy-for-her2-negative-breast-cancer/abstract/18" rel="nofollow - 18 ]. (See https://www.uptodate.com/index.html#H1657040606" rel="nofollow - 'Rationale for anthracycline- and taxane-containing regimen' below.)

Further details for those with triple-negative breast cancer (TNBC) are found elsewhere. (See https://www.uptodate.com/contents/er-pr-negative-her2-negative-triple-negative-breast-cancer?sectionName=Chemotherapy&topicRef=788&anchor=H2816668864&source=see_link#H2816668864" rel="nofollow - "ER/PR negative, HER2-negative (triple-negative) breast cancer", section on 'Chemotherapy' .)

Although no regimen has proven to be superior to AC-T, non-anthracycline-based regimens may be an appropriate strategy for certain groups of patients.

https://www.uptodate.com/contents/adjuvant-chemotherapy-for-her2-negative-breast-cancer/print" rel="nofollow - https://www.uptodate.com/contents/adjuvant-chemotherapy-for-her2-negative-breast-cancer/print

Effectiveness of an Adjuvant Chemotherapy Regimen for Early-Stage Breast Cancer

A Systematic Review and Network Meta-analysis

RESULTS

We identified 24 trials. The TC and platinum-containing regimens had OS benefit similar to that of sequential AC-T (TC hazard ratio


, 0.93; 95%CI, 0.62Ė1.40; and platinum HR, 0.93; 95%CI, 0.66Ė1.31). Patients treated with CMF or AC had significantly worse OS than those treated with sequential AC-T (CMF HR, 1.56; 95%CI, 1.32Ė1.85; and AC HR, 1.22; 95%CI, 1.10Ė1.37). Platinum-containing regimens tended to be more toxic than sequential AC-T. The toxicity of TC was similar to or less than that of sequential AC-T. Meta-regression analysis showed that hormone receptor status did not impact the HRs for OS for any regimen.

CONCLUSIONS AND RELEVANCE

Sequential AC-T is likely to be the most effective adjuvant therapy regimen for early-stage breast cancer regardless of hormone receptor status.

Discussion:

We draw several important conclusions from this study. First, sequential AC-T should still be the first choice for chemotherapy in the general population of patients with early-stage breast cancer on the basis of OS and risk of unacceptable AEs. Our meta-regression analysis to consider the potential effect of hormone receptor status on OS showed that findings were similar after adjustment for hormone receptor status. Second, TC was similar to sequential AC-T in terms of treatment effect and unacceptable AEs and might be considered as a first choice treatment for patients with high risk of cardiotoxic effects. Third, although platinum-containing regimens have recently been considered for breast cancer treatment, they are not superior to sequential AC-T in terms of OS and tend to be more toxic.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5575939/" rel="nofollow - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5575939/

Chart:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5575939/figure/F2/" rel="nofollow - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5575939/figure/F2/







-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: Laurarev
Date Posted: Jul 18 2019 at 8:56am
Thanks for the reply Mel... I feel the same way about all the ďoptionsĒ! Doctors, please just tell me what I need to do!  This is all new to me, yet the doctors do this day in and day out. ďSloanĒ is the number 2 cancer hospital in the US; Memorial Sloan Kettering. I agree with you that whatever the most aggressive treatment is thatís out there is what I want to get. I would like to reduce my chances of this cancer ever coming back. And like you, I only want to do this once. From all my research it seems TNBC is the most aggressive breast cancer out there so why not treat it with the most aggressive chemotherapy? 🤷🏻‍♀️ I just thought maybe I was missing something yesterday when the Sloan doctor mentioned a gentler form of chemo. Could it be that the CMF is just as aggressive as the AC-T, but the side effects are ďgentlerĒ?? Iím just not sure, so thatís why I will be meeting again with the oncologist at my local hospital who told me he would be treating me with the AC-T. Iím supposed to start treatment on July 29th. Good luck with your planning on the 30th. Let me know how you make out!
Laura 


Posted By: Laurarev
Date Posted: Jul 18 2019 at 9:05am
Wow! Thanks for showing me the research. Very interesting! So it looks like AC-T is the way to go. Iím just surprised the other doctor recommended the CMF 🤔


Posted By: Kellyless
Date Posted: Jul 18 2019 at 9:33am
The way my doctor at MD Anderson out it, ACT is the gold standard for TNBC. I did it the first time, had a complete cure. 7 years later I had the rare unicorn recurrence. Adriamycin isn't something you should do twice (we call it a "lifetime dose", but they will use it a second time for stage 4). so Carboplatin is Second choice - with what is the question, he likes Taxol. I got a pathological complete response with Carboplatin and Taxol.  He said, "Taxanes are always a good idea with TNBC, Taxol is the best". BUT - at the end of my C+T treatment, they couldn't tell from the ultrasound If it was really gone or not- it was much  smaller, but ?? If it was gone? He said if I "wanted" to do more chemo, he'd suggest CMF - 3rd choice for TNBC chemo. I was just too dang sick to keep going - luckily, as it turned out. 

-------------
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!


Posted By: Kellyless
Date Posted: Jul 18 2019 at 9:45am
Welcome Melanie! Reading your story of starting your care in Morocco gives me sympathetic anxiety. So glad you're home for the rest of it! You had a lumpectomy? You'll probably be doing 4 1/2- 5 months of chemo plus a month of radiation, so 6 months or so of treatment sounds right. I understand you wanting a doctor to handle the anxiety of choosing what's best, but I've seen some wacky suggestions from doctors in my 10 years of hanging around here. If he suggests anything except what's the norm for your stats, I would ask WHY for sure. You've one chance at this, failure is usually fatal, so you're doing the right thing by coming here, reading and educating yourself. 

-------------
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!


Posted By: 123Donna
Date Posted: Jul 18 2019 at 11:41am
Originally posted by Laurarev Laurarev wrote:

Wow! Thanks for showing me the research. Very interesting! So it looks like AC-T is the way to go. Iím just surprised the other doctor recommended the CMF 🤔


Laurarev,

You may want to ask him why he suggested CMF and mention this study and see why he thinks it's better than AC-T. 

"On meta-regression analysis adjusting for hormone receptor status, there were no significant differences in overall survival for sequential AC-T vs concurrent ACT, anthracycline alone, platinum-containing regimens, or TC, with CMF being associated with significantly poorer survival."

https://www.ascopost.com/News/33921" rel="nofollow - https://www.ascopost.com/News/33921




-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: Laurarev
Date Posted: Jul 18 2019 at 12:23pm
I sent her (Sloan oncologist) an email stating I walked away from our consultation a bit confused and couldnít recollect the exact reason why she would prefer the CMF as opposed to the AC-T. I know she mentioned that I would tolerate it better but I donít recall her saying whether or not it was as effective as AC-T. She was throwing around a lot of percentages but the only one I truly remember is that she said if I only had the lumpectomy (without chemo) the chances of recurrence would be 15% and if I did the chemo the chances of the cancer recurring drop down to 5-10%. She said the studies are not specific to a 46 yr old female with a 9mm TNBC tumor.   Then she mentioned something about a 3-4% difference, and Iím not sure if she was referring to the CMF vs the AC-T. I will let you know how she replies 

Thank you!


Posted By: Laurarev
Date Posted: Jul 18 2019 at 12:27pm
ok, so if Iím understanding this correctly, the doctors at md Anderson only use CMF as a third option? This is after theyíve used the other types of chemo on a patient. Or was that just in your particular case? 
Iím sorry you had that ďrare unicornĒ recurrence 😢. I hope youíre feeling well now!! Thanks for trying to help clear things up for me. 


Posted By: Laurarev
Date Posted: Jul 18 2019 at 12:31pm
Ok, so if Iím understanding you correctly, the doctors at me Anderson only use CMF as a third option? This is after they have already used the other chemos on a patient. Or was that just for you in your particular situation? 
Iím sorry you had the ďrare unicornĒ recurrence😢 I hope you are feeling well now!! Thank you for trying to help clear up my confusion. 


Posted By: AnneB
Date Posted: Jul 22 2019 at 12:02am
I am so happy that I have found this forum.  It has been a whirlwind 5 days since I was given the 'malignant' biopsy result and 3 days since I first heard that it is TNBC - and what that means.  The biopsy indicates that the cancer is between 7mm-9mm which the surgeon and oncologist tell me is good.  I feel like the surgeon is pushing me in the direction of a bilateral mastectomy because of the high recurrence rate, but the oncologist was pleased to hear that I'm leaning towards a lumpectomy.  I'd love to hear how each of you made the choices that you made between those two options.  

I have an 18 year old daughter who is about to leave for her first year of college and a 16 year old daughter who is about to leave for her junior year abroad to Norway.  It was no easy task to tell them of this diagnosis.  This is the time in their lives when they're supposed to be independent and selfishly enjoying these adventures - but their instinct makes them want to be here to take care of me.  I HATE THIS!!!

I meet again with the surgeon tomorrow.  I am not to the point yet where I am digging into chemo details because I need to first conquer the choice of a lumpectomy or a bilateral mastectomy.  

Again, I am so happy that I found this forum and the tnbc foundation website.  <3


Anne


Posted By: Kellyless
Date Posted: Jul 22 2019 at 1:48am
Welcome Anne, so sorry you and your kids are having to go through this.
May I ask why you think you need to make a surgical decision now? You can wait until your through all of the testing they're going to do: a breast MRI to get a better measurement (ultrasound is not real accurate), genetic counseling and tests, CAT, Bone, maybe PET and others - then you'll have lots more info. With yours possibly being a CM or a lil less, your likely candidate to do chemo first, possibly killing all of the cancer, a pathological complete response. All of those those things will factor into a surgical decision. My advise is to just breathe, wait for all of the information to be gathered. Meet with the medical oncologist. Meet with the radiation oncologist. There's no reason at all to make a surgery decision now, when you've got so very little info. If any surgeon pressures you for a surgical decision before you've done all the tests and met the other oncologists I would consider a second surgical oncologist opinion as well. Yes, acting quickly with TNBC is important, but you've time to do it all the right way. The more info you have, the easier it will be to make a plan, a plan that will leave you with no regrets. 

PS: the high recurrence rate for our disease that is constantly mentioned is NOT for a recurrence in your breasts, unless you have a genetic mutation. The recurrence is elsewhere in your body. A successful full course of treatment, with either chemo & mastectomy, or chemo, lumpectomy with clear margins and radiation - do indeed have the same recurrence and survival rates. 


-------------
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!


Posted By: 123Donna
Date Posted: Jul 22 2019 at 7:31am
AnneB,

I echo everything Kellyless said.  If you have any doubts, please consider getting a second opinion.  For a small tumor, unless you have a genetic mutation or a family history of bc, you have more choices for surgery options.  Take a look at this study comparing surgery options for early stage TNBC:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6192926/" rel="nofollow - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6192926/




-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: Laurarev
Date Posted: Jul 24 2019 at 8:47pm
Anne, 
I can only speak for what I personally did, but there are women on this forum who know A LOT more than I do. I met with two different surgical oncologists and two different medical oncologists to get second opinions both times  I have not met any radiation oncologists yet. I was given the choice by both surgeons to either have a lumpectomy or double mastectomy. At first I just couldnít understand why I had to make a choice. Why werent they just telling me what had to be done? I ended up going with the surgeon at memorial Sloan Kettering because she explained what Kellyless said. That if the cancer was going to recur it was not a guarantee that it would come back to the breasts. She said some women just feel betrayed by their breasts and want them off. That being said they thought my tumor was 13 mm before surgery... it turned out to be 9mm. Either way, the surgeon and oncologist agreed that I was in a position (being less than 5cm) to do chemo either before or after lumpectomy. Either way was ok and we all decided on lumpectomy first. The tumor had a 70% proliferation rate and  I just really wanted it cut out of me. I still havenít even received the results of my brca test and itís been 6 weeks.  The surgeon said if God forbid the cancer did come back, and if it came back to one of my breasts, then I could say I want the double mastectomy. So I had the surgery on June 25th (almost exactly one month after I received the biopsy results) it was only 9mm, all margins were clear, and itís not in the lymph nodes. So now next week Iíll start the ACT chemo. 
Although Iíve had a little bump in the road as Iíve been in the hospital the last 5 days. I went in on Friday July 19th for the port surgery and there were big complications. Apparently my anatomy is weird and I have a 1 in 10,000 anomaly. The arteries are in front of the veins instead of vice versa. The surgeon I chose is an ďexpertĒ at ports and all the chemo nurses love his work. He said heís never seen anything like what he saw in me and heís been putting in ports for 24 years and has done over 1500 of them!  He eventually closed me up with no port after trying for over an hour. But now I have blood pooling in the pleural cavity around my lungs and a possible clot in my jugular vein. Iím getting that checked by a vascular ultrasound tech tomorrow at 7am. The interventional radiologist ended up putting in a port on the other side yesterday. Needless to say Iím in quite a bit of pain. Well, such is life! 


Posted By: 123Donna
Date Posted: Jul 24 2019 at 10:16pm
Oh Laura, I've never heard of that complication with the port surgery.  It sounds so dangerous.  I hope they can resolve the issues so you can come home soon.  Please keep us posted.  We are worried about you.

Donna


-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: Kellyless
Date Posted: Jul 25 2019 at 11:08am
OMG Laura,.that's just a nightmare! In my 10 years being a part of the cancer community that's the worst port complication  story I've ever heard. I can't imagine the horror of waking from a "simple" routine procedure and having to grasp all of that! I'm so very sorry this is happening to you. If this were me, I would want another surgeon, one completely not attached to this doctor or hospital, to do a full review of what has happened. I'd want to meet with her, and have her explain what she sees as happened, what she understands is your anatomy and what he did to it. Just.....because. Because I'd want to know For Sure going forward what happened to me and WHY. Hopefully you'll now do chemo &  radiation without incident, but I'm the poster child of You Never Know For Sure what your medical future will bring. You're bound to have some hospital and surgery PTSD going forward, in my experience knowledge is power over that condition. (I have it from my surgical nightmare and 9 months of wound care resulting from it) keep us updated on what's happening, I'll be thinking of you.
PS: to everyone getting a port - this is normally a very quick, simple procedure. I've had two ports. Pretty much zero pain, from post surgery to removal. I never even had a smidge of discomfort having it accessed, and both times they used them for ALL blood draws, IVs and infusions. 
PSS: WHY are so many ladies having blood draws from their arms when they have ports lately??? I've spoken to several lately that even on infusion days they draw blood from their veins, AND access the port for infusion?? The whole point of the port is to save your veins, and not make holes in you while you're anemic, lack an immune system or barely have any platelets left making you a bleed risk? Even at the hospital, when I went to the ER chemo sick they called a port certified nurse down from the cancer floor to access my port for the IV! One person's theory is the clinics are too cheap to have nurses in their labs that can do the access, using cheap phlebotomists instead? I just don't get it.


-------------
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!


Posted By: Laurarev
Date Posted: Jul 25 2019 at 11:29am
thank you for the concern ladies! I barely slept last night. Unbelievable pain on the left side where the pleural cavity is filled with blood. I went to the 7am appointment for the vascular ultrasound tech to check the jugular. I sat there whimpering in pain with tears streaming down my face. How am I going to start chemo on Monday when Iím in so much pain? Now I have a fever of 100.8. I called the oncologist who is trying to reach the port surgeon (the 1st one who encountered the weird anatomy)  heís in surgery right now so the oncologist said sit tight while he keeps attempting to take to him. Iím going to have to go back to the hospital for another chest X-ray, something is wrong 😢. Oh and by the way, I donít think I should have a fever at all being that Iíve been on cipro the past 9 days for a little infection I developed at the incision site of my lumpectomy 


Posted By: Laurarev
Date Posted: Jul 25 2019 at 11:32am
forgot to mention that the cardiologist has not had a chance to read the ultrasound from this morning yet, but they were looking for a pseudo aneurysm, thrombosis, or occlusion.  Although the oncologist said even if the report finds any of those itís going to be unrelated to the pleural cavity pain I feel now and the fever 🤷🏻‍♀️🤷🏻‍♀️🤷🏻‍♀️🤷🏻‍♀️


Posted By: Melanie
Date Posted: Jul 30 2019 at 6:04am
hey Laura, 
That is so horrible. I canít imagine what you are dealing with. 
Just chemo is enough. Let me know how you are tracking and when you start. We seem to be going through the same treatment at the same time. Nice to have a journey pal. 
I have had my planning and will be starting dose dense AC-T on Monday 5th of August. 
I am not having a port as yet. 
Just concerned about one margin which was only cleared by 0.01mm. The oncologist is getting a second opinion. 
Iím going to try the ice cap to keep my hair, not sure if it will work though or if I can tolerate it. Hair seems a big deal but in the grand scheme itís probably not. 
Mel 


Posted By: Melanie
Date Posted: Jul 30 2019 at 6:20am
hi Anne, 
I too was recently diagnosed. I had a lumpectomy and removal of lymph node. Clear margins and I start chemo Monday the 5th. Here goes!!
Good luck to you, keep us posted. 
Mel 


Posted By: Danzig482
Date Posted: Aug 01 2019 at 6:14am
Hi Laura- 2 books I have found really helpful are Staying healthy on chemo by Mike Hebert and Rebuild by Dr. Z. I donít think anyone commits to scientific data regarding food restrictions but the most consistent recommendations Iíve seen are plant based diets and limiting sugar. 
The only other thing I added a week before chemo started was full spectrum 2000 cbd oil (Amandahemp.com). I donít know that itís helping but Iíve had no nausea, no fatigue, no anxiety, no sleep issues (except the first night after infusions I take melatonin too because the steroids hype me up).
I know youíre experiencing a lot of other issues too but maybe these few things will give you a little relief, or at the very least something to focus on that you have control over since there are a many things you canít control right now.
Prayers 🙏


Posted By: Danzig482
Date Posted: Aug 01 2019 at 6:26am
Kellyjess - did they do your blood draws from your port with one stick then stick you again (port) for the infusion? I was wondering why I had an arm draw too when I heard many use the port but itís not been difficult to find a vein so I hadnít questioned it. Also I thought 2 port sticks within a half hour of each other would be weird too 🤷‍♀️


Posted By: Plume
Date Posted: Aug 01 2019 at 11:31am
Laura, I have just read your account of your port surgery and even all these miles away in France, I couldn't help shedding a tear for you!
I hope you are more comfortable today and that everything is improving.
My port surgery was horribly painful but NOTHING like yours!  I was told it would take 20 minutes but it ended up taking an hour.  Only local anaesthetic and I had to keep my head turned in the opposite direction the whole time.  The surgeon kept saying my veins were too small and he had to have 3 tries before finally putting it in at such an awkward angle that the thing used to dig and cause pain when I slept on that side. The local anaesthetic didn't last the whole hour and all he did was kept spraying some stuff on yet another site in my neck.
I too had an infection and I can feel all the fear come back, just thinking about it from reading your story.
For people asking about taking blood, etc, all my bloods were taken at home using veins in my arms the day before the next chemo.  But at the hospital, everything was done through the port.
One other thing to mention is that I didn't know about the numbing patches that you get to put on the port about an hour beforehand and then you feel no pain.  Unfortunately for me, I'd had 5 sessions before I discovered from a friend that I should have had the patches.  So I only had one single pain free puncture.  How I used to dread the chemo sessions!
I have had my port removed straight after the radiotherapy (33 sessions).  It bothered me the whole time I had it and the sight and feel of it reminded me of that theatre session.  After the removal, a dent and an angry-looking scar remained.  But now, just over a year later, the dent has filled out and the scar is not very noticeable anymore.
You have had such a scary and painful time, Laura, I just wanted to send you my very best wishes and I shall be thinking of you, especially in my prayers.

 



Posted By: Laurarev
Date Posted: Aug 04 2019 at 9:44pm
thank you so much ladies... to all of you!! For your prayers, your advice, and sharing your stories. I am sorry for those of you that have also gone through pain, and I pray for all of you still in the midst of the chemo/ surgery journey. 🙏🏻  
Iím sure youíve all been wondering how Iím doing, I just couldnít even go on the forum, or the phone for that matter, Iíve had so much pain. I ended up starting the chemo last Monday, July 29th. I truly donít think my body was ready for it, having not healed from the hemothorax and pneumothorax. All the tests showed that there are no blood clots, but there is a very large amount of blood in the pleural cavity. All of the doctors involved have validated the extreme pain this causes, but they said we need to wait 4 weeks to several months for the body to naturally absorb the blood. My general practitioner suggests I see a pulmonologist tomorrow. He said she is the one who should really give the final answer as to how this should be handled.  The chemo kicked my ass... I guess because I was compromised already. Today is the first day I feel even remotely normal again, but still severe pain when taking a deep breath and a very sharp knife like pain in my right temple ear area that comes and goes. I can only sleep on my back in an upright position, so I am exhausted every day.  My oncologist had me on painkillers, but I kept getting a fever that was creeping towards the 100.4 cutoff so he said I had to stop them and take Advil and Tylenol instead. I was up all night Monday night, I guess from the steroids. Even though I took a melatonin and a Xanax (which at this point Iím taking every night along with cbd oil).  Nothing is helping. Wednesday I woke up with intense abdominal pain, diarrhea, and vomiting. Just so so sick on top of everything else. To hear someone even open a wrapper in the other room hurt my head. I hate to complain, and this is normally not how I am. I knew chemo was not going to be a walk in the park.... but this has been over the top. I truly think itís because I didnít go into it a healthy person as a result of the port surgery. 
Well, Iíll try to keep you all updated. Please keep saying your prayers for me as I will for all of you! ❤️🙏🏻


Posted By: Danzig482
Date Posted: Aug 06 2019 at 7:17am
you are doing great considering your extenuating am circumstances. Itís true you will feel the effects of chemo more if you arenít  100% to begin with.
2 books you should try are Rebuild by Dr. Z and Eating healthy with chemo. They are great reads and will help you focus on something besides the road bumps your having- and perhaps gain some tips to keep you strong 💪 


Posted By: 123Donna
Date Posted: Aug 06 2019 at 7:54am
Laurarev,

How awful you are dealing with all these complications.  I hope the pulmonologist has some answers to help alleviate the pain.  Waiting for the body to absorb the excess blood doesn't seem like the ideal solution.  I agree that your compromised body is feeling the effects of chemo more so because of your situation.  Hope they can resolve the problem so you are not in so much pain.  Keep us posted.

Donna


-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: Plume
Date Posted: Aug 06 2019 at 9:46am
Laura, have the doctors given you anything to help with the sickness and vomiting?  I had something called metoclopramide which worked well.

Also, don't forget (and I was told this by the professionals) that you won't necessarily get the same reaction to each session of chemo.  So let's hope that the next one won't have such nasty effects.

The pulmonologist would have some very clear views on how the problem with your lungs is treated.  I am glad that you are seeing one so quickly.  I had a marvellous pulmonologist (my problems were complicated by asthma which I have had for years) and the treatment I had from this doctor has truly turned my life around.  I am hoping that yours will give you treatment that will relieve your pain.

Be assured that we are thinking of you and continuing to have you in our prayers and hopes.

Lastly, thank you for updating us on your condition.  I was indeed wondering how you were getting along.  Take great care of yourself!  


Posted By: strongtogether
Date Posted: Aug 07 2019 at 8:33am
Hi Folks!
 45 year old mother of two here! I was recently diagnosed with TNBC. I was checking myself in the shower and felt something .... went to see my doctor and got an instant referral to the breast clinic. . . I live in Brisbane, which is a city on the East coast of Australia. 
 Those days between the diagnosis and seeing the breast surgeon seemed to last forever. I  reality it was only about four days. I had no idea what tnbc meant. My initial instinct was to have a double mastectomy. The surgeon gently guided me toward a single. The Cancer was quite fast growing and quite big - around 5 cm. Surgery day couldnt come soon enough.
 The sentinel lymph node biopsy came back positive, and now I was really scared. I had an axillary clearance and a CT-PET Scan. Thankfully both came back clear.
 I am now in the middle of chemotherapy. The initial plan is two months of dose dense (bi weekly) followed by 13 weekly sesions. After that it will be 12 weekly chemo sessions. 
I am not sure what to expect. I am finding it tough, no one said this would be a picnic. Its true that the medication's side effects of nausea are well controlled, bu I am feeling physically tired. Again, this is to be expected. 
 Lots of love and support to you all.



Posted By: 123Donna
Date Posted: Aug 07 2019 at 9:04am
Welcome Strongtogether,

This is a group no one wants to join, but hopefully you'll find this forum with useful information and support.  We understand all the emotions and physical issues you are going through.  Congrats on being half way through chemo!  Yes, I found fatigue was the biggest side effect from treatment.  It's hard to explain to others that haven't gone through chemo how exhausting you can feel.  I remember just walking up a flight of stairs felt like climbing a mountain.  It does get better once treatment ends. 

Donna



-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: Melanie
Date Posted: Aug 07 2019 at 1:50pm
Hi strong together, 
Iím in north coast NSW. Very close! Sorry to hear about your diagnosis but great your scan is clear. I have just had my first chemo dose two days ago. Full on, went to work the next day very fatigued. However also suffering some insomnia which isnít helping. I am finding some foods are making my stomach acidic and uncomfortable. Has anyone found anything to avoid. Iím thinking of giving up my beloved coffee and Greek yogurt as well. I think it triggered it today. 
Let me know any tips. You are a little further along. Are you trying the ice cap? I am but I felt very unsettled with it. 
Mel 


Posted By: Laurarev
Date Posted: Aug 07 2019 at 6:10pm
my nurses told me that the hair follicles donít stand a chance with the AC chemo... even with the ice cap. But I guess itís worth a try. I hope it works for you!

So, I saw the pulmonologist today. He is ordering another ct scan STAT. I will go first thing in the morning. He said there is a lot of blood still pooling around the lung. He took a chest X-ray in his office. He agrees that big mistakes were made. I should have had a pulmonologist consult and the blood should have been drained prior to chemo.  Now my immune system is compromised but we still have to deal with this immediately. He called my Oncologistís office and had them pull him from a patient to talk to him right away. Questioned him on everything. He does not think I was in any condition to start the chemotherapy last Monday, and heís unsure Iíll be ready for my second dose next week. He wants to read the new ct scan tomorrow and discuss it with my oncologist and then make a plan from there. He said the condition is severe and serious and the blood is abundant! He said one of the problems is I look young, healthy, pretty, and not in distress. My oxygen level is good... but internally Iím a mess. Stay tuned! 


Posted By: 123Donna
Date Posted: Aug 07 2019 at 8:21pm
Laurarev,

I'm so sorry (and mad) that you are dealing with this medical issue because mistakes were made.  It seems like your new pulmonologist is on top of the situation and hopefully can get this problem resolved. 

Donna


-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: 123Donna
Date Posted: Aug 07 2019 at 8:25pm
Melanie,

When I had chemo the first time, it tore up my stomach.  My onc had me on Pepcid-AC, but still I couldn't tolerate tomato or spicey foods, certain fruits like peaches, coffee, etc.  I joked that all I wanted/could eat was "white" food like vanilla yogurt, applesauce, turkey.  I'm a big coffee drinker and couldn't stand it during treatment.  The good news was once I finished chemo, I was able to eat my normal foods again. 


-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: strongtogether
Date Posted: Aug 10 2019 at 3:46am
Hi Melanie,
I have just decided to ditch the cold cap and embrace the freedom of not having hair - for a while anyway! 
It will grow back, and I have a good wig!
 The insomnia really sucks. 
 What chemo regimen have they got you on?


Posted By: Laurarev
Date Posted: Aug 16 2019 at 1:17pm
hi everyone! Just thought Iíd check in and update you all. Well Iíve completed my 2nd round of AC, so Iím halfway through. Iím doing better than the last time, so Iíll take that as a blessing!   Unfortunately the nurse had to stop the Adriamycin syringe very close to the end of injection because I felt a heavy sharp pain in the middle of my chest and pressure in my head behind my eyes. My oncologist ordered an echocardiogram which I had done yestrday. On the bright side, the nausea and cramping is MUCH less this time. I think I can thank the Sancuso patch and the visbiome probiotic for that! My head pain is much milder as well, and the hemothorax seems to be getting ever so slightly better (but Iíll take it!) Iím having a lot of back pain this time though. My doctor thinks itís probably  from the on pro. Although I thought that causes bone pain and this feels kind of muscular. Only on one side and in the middle part of my back. Anyone have any helpful hints. Doc just said to take 3 Motrin. 
One more question. For those of you that have had AC and then moved onto taxol... did you have a much easier time with the taxol? Iím really really hoping that will be the case foe me. 
Thavks for listening. I hope you are all doing well and of course having more good days than bad! ❌⭕️❤️😘


Posted By: Marymom
Date Posted: Aug 16 2019 at 4:09pm
Hi...taxol was much easier for me.  I was like my old self!  With AC, I never got sick.  I slept for days!  I would get out of bed, do one or two things and go back to bed for another eight hours.  Oddly enough, I was never a sleeper.  Maybe I would sleep four hours a night...so, I think I just caught up on 56 years of owed sleep!

So, be well and know that you are prayed for.  My prayers always include my forum friends.  Prayers gladly accepted Here!

As Ever, marymom!


Posted By: Laurarev
Date Posted: Aug 22 2019 at 9:32pm
hi everyone... I hope youíre all doing well! Iím hanging in there  I have a new question that maybe some of you can answer. As you all know, chemotherapy is the gift that keeps giving! And with it comes all sorts of new ďailmentsĒ.
 So Iíve got two AC treatments under my belt, and Iíve got two more to go. I think Iíve experienced every horrible side effect imaginable. The latest one is muscle pain. It is severe, and itís only on the right side of my middle back. Iíve read that the side you get treatment on could be associated with the side you feel more pain on. My port is on my right side... so is my breast cancer. I was experiencing very bad nausea, so my doctor ordered me the Sancuso patch this last go around. (It really helped!) The patch was put on my left arm, so the neulasta On Probwas put on my right arm, which is the same side it was on the first round of chemo. So Iím thinking that maybe the pain on the right side of my middle back is associated with the side Iím getting the AC AND the side I have the neulasta On Pro patch on. So hereís my question. Do you think I should switch the Sancuso patch to the right and the neulasta On Pro patch to the left for my next treatment on Monday? My concern is that then I may still be feeling residual pain on the right side, and now have new pain on the left! So pain on BOTH sides!! Eek Or if I keep things the way they were, I may have even WORSE pain on the right side, being that I compiled it with the neulasta On Pro patch being out there for three treatments in a row.  Iím just not sure which makes more sense. Any advice would be greatly appreciated!! (And on a side note... does anyone know if we still wear the neulasta On Pro patch when chemo gets switched over to Taxol?)
Thanks in advance for your replies. 🤗
Laura 


Posted By: Kellyless
Date Posted: Aug 23 2019 at 1:17am
I've not heard the pain is related to the location of the Neulasta shot. If the pain is from your cancer treatment and not related to your port nightmare, then it is probably from Neulasta. I did not do the on pro, I went to the hospital the day after and got the shots in my upper thigh or hip/butt. I did have bone pain and it just plain sucked. I took real pain meds on the bad days, hydrocodone, and it worked like a champ. 
If you're doing Taxol weekly you can't do Neulasta, as it's a two week cycle drug. The weekly taxols are typically easier on your white count, but if it is a problem you would do neupogen. A similar drug, a series of shots for three days. I think the bone pain is less, but everyone is different. Hopefully you won't  need it! But it's there if you do. 


-------------
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!


Posted By: strongtogether
Date Posted: Aug 23 2019 at 6:54am
One more AC to go..... so excited for that to be over! 
 I am trying to understand something - maybe @kellyless will know!
 If you have a Pathologic complete response, theres a very good chance you dont get recurrence. I understand that, it makes perfect sense. Essentially, the chemo killed virtually all the Cancer in the tumour and it makes sense that any stray cells would have been wiped out too. 
 What I dont understand is this - in the absence of PCR, there is still a good chance of achieving no recurrence (65% ish). .. . why is that? surely the absence of PCR would imply that some isolated C cells have survived the chemo... what happens to them? 



Posted By: Kellyless
Date Posted: Aug 23 2019 at 9:04am
I would assume it would mean the tumor was just too big, or dense or what have you for the chemo to destroy it entirely. Our tumors, especially the high grade ones tend to be hard, physically hard, that's why going through chemo your doctor will say when she palpates them at visits that she can tell they are "softening" . Softening is good, it means cell death is occurring. it's a lot tougher to get an entire hard tumor to soften and die than small collections of tumor cells. We all went through tons of tests to make sure we had no other tumors anywhere, so other than the initial tumor itself, that's all we're after with chemo is all the other cells that can be lurking. 
And the reason so many bother with more chemo, like Xeloda, when they have no pCR is the ramifications of that 35% chance of recurrence. They don't mean a 35% chance of another breast tumor. The 35% chance of recurrence is outside the breast - stage 4. Unfortunately the stats on surviving our disease at that point are lousy. I planned on doing Xeloda last time, I was sure of it. It was the best shock of a lifetime when I didn't have to. But I had surgical complications because of radiation damage and ended up with multiple surgeries and 9 months of wound care. This disease has been the grim gift that keeps on giving for me, lol. But I still know I'm lucky to even be here :-) 


-------------
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!


Posted By: Laurarev
Date Posted: Aug 23 2019 at 9:05am
thank you for your reply!! Maybe if I go in for the shot the day after chemo, instead of getting the On Pro patch it will be a little easier. I had only heard of BONE pain as well, so Iím not sure about this muscular pain. Itís on the opposite side of the hemothorax, so Iím just not sure whatís going on. 
Do you know if there are any advantages of doing the taxol every other week in ďdose denseĒ treatments? My oncologist seems to be pushing for this.  
So, just so I understand you correctly...  if I did the dose dense taxol I would still get the on pro patch, but if I do the taxol weekly I wonít get it. If my wbc ends up being low on the weekly taxol I would get a shot for three days called  Neupogen?

Thanks so much for your help. This is all so confusing. 


Posted By: Laurarev
Date Posted: Aug 23 2019 at 9:11am
oh wow! I didnít know you had surgical complications as well. Iím so sorry to hear that 😢 the whole thing sucks! The diagnosis, the surgeries, the chemo, the radiation, all of it!
I have another question after reading the previous post. Being that I did surgery to remove the tumor first, rather than chemo to shrink the tumor first.... I will never know if I have a pathological complete response. Is that correct? So where does that leave people in my situation?


Posted By: Laurarev
Date Posted: Aug 23 2019 at 9:14am
strongtogether,
I am so happy for you that you only have one more AC to go!!! It feels like these treatments are taking a lifetime. Do you agree? 
So will you be following the AC with taxol? If so are you doing it every week for twelve weeks, or 4 treatments every other week. How are you feeling?


Posted By: 123Donna
Date Posted: Aug 23 2019 at 10:49am
Laurarev,

I don't believe they give you Neulasta for Taxol, just AC.  The benefit of On Pro Patch for Neulasta was that you don't have to go back to the oncologist the day after chemo to get the Neulasta shot.  When I had chemo, the On Pro Patch wasn't available yet so our only choice was to make the trip a day after chemo.  It wasn't exactly what you want to do the day after chemo so I think the injectable On Pro was a great invention.

Donna


-------------
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15



Posted By: strongtogether
Date Posted: Aug 23 2019 at 4:07pm
Hi Lauralev,
 After AC I will roll into Taxol. It is a series of 12 weekly sessions, as well as Carboplatin every third week. 
 Everyone says it is easier than AC... here's to that!
 
Kelly, thank you for that insight. I can see how that would work. 


Posted By: Kellyless
Date Posted: Aug 23 2019 at 5:45pm
I believe they've proven that the Taxol weekly is as effective as the dose dense. There's a higher chance of neuropathy with dose dense, and that can be permanent. The only benefit I'm aware of is it's over in 8 weeks. I'd do the 12 weeks if i was doing it again, neuropathy is awful. 
My surgical complications were because I attempted reconstruction after I'd had radiation. Reconstruction failed and my chest is a mess. If I could go back in time I would never have tried! being flat isn't so bad for me. Of course I've been with my husband for over 31 years, he was anti reconstruction from the beginning. Oh well. I've got 3 pair of boobs that are all different. I only wear them when I go out or otherwise want to look better in my clothes. I match my boobs to my mood, or the clothes or what I'm going to be doing. :-D Insurance pays for a new pair every two years, so next year I plan on getting a much smaller pair for the collection. Insurance pays for several bras per year as well. 
Even after what I've been thru, if you've no genetic mutations and your doctor's say you've the same risk of recurrence and survival with lumpectomy and radiation as with a mastectomy, I'd do the lumpectomy 100%. I'm treated like a unicorn to this day for my rare recurrence after 7 years, it just doesn't happen. @Monarch can vouch for it. When we're at her cancer clinic the nurses and staff all ask me for the details. 


-------------
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/16 Local recurrence same breast, same spot 1.8cm Carb.4x every 3 wks, Taxol 12x once wk. Dbl Mast. PCR!! Reconstruction fail, NED!


Posted By: Laurarev
Date Posted: Aug 23 2019 at 8:19pm
Oh my goodness! Iím so sorry youíve been through all that. What a mess!!  You really have a positive attitude about it though. Of course, Iím sure many years have been shed, but you sound like youíve gotten to a much better place both mentally and physically. 
When I first got diagnosed both surgeons that I met with said it was my choice to either do a double mastectomy or a lumpectomy. I didnít understand why it would be MY choice. Was one better than the other as far as my chances of survival? They said that the mastectomy was not a guarantee that the cancer wouldnít come back. They said it could still come back to the chest wall even if I had the breast tissue removed. I was told my lump was so small, it was a fine choice to get the lumpectomy. It wasnít until after the surgery that I also found out I do not have any genetic mutations, so that was not a deciding factor... but thank God! One of the surgeons had said ďsome women feel their breasts have betrayed them and they just want them off!Ē  Well I figured if it wasnít a guarantee that the cancer wasnít going to come back... why put myself through that surgery. 
But I did have a teacher friend at work who had just finished chemo and radiation. She was starting to go to group meetings and one of the girls at her meetings was also a nurse. The nurse said it bothered her so much that the doctors arenít telling their patients how difficult it is to have reconstruction after radiation. She said the radiation tightens and shrinks the skin so much it makes it very difficult to implant a fake breast. My friend said she wishes she had known that. She would have just had the double mastectomy. At the time I just wanted my lumpectomy surgery to happen and to get the cancer cut out of me! But now after hearing your story I wonder if I should have done the double mastectomy. 


Posted By: Laurarev
Date Posted: Aug 23 2019 at 8:21pm
Strong together,

That is what I keep hearing too. Lord I hope so!! I  going to have a long talk with my doctor about the 12 weekly sessions vs the dose dense 4 sessions. If itís just about the extra 4 weeks, I have no problem with it. If itís going to be easier on my most, Iíll take it!! It seems to be the norm for everyone anyhow.



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