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Greetings everyone! I have a question...

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Topic: Greetings everyone! I have a question...
Posted By: RyB1984
Subject: Greetings everyone! I have a question...
Date Posted: Jul 22 2016 at 9:08am
Hello everyone!

I am new to this forum and have been visiting this discussion forum for a few months now since my mom was diagnosed in March.

My mom, age 64, was diagnosed with Stage 2A, 2.4 cm, Grade 3, apparently no nodes involved and has not spread anywhere in the body w/ TNBC.
All doctors say that it's treatable and curable. they kept saying over and over when we met the oncologist, surgeon, radiation people etc.
They did explain that on the pet scan or MRI, the tumor was deep and at first was concerned that it was touching a muscle. Luckily enough, we got results back right away and the cancer was not touching anything. I couldn't sleep for days and I was worried all the time. My mom on the other hand.....WOW....it's amazing the strength she has and she has had not 1 DAY where she let this cancer get to her mentality. She, RIGHT FROM THE BEGINNING, said that she will beat this. Her mother (my grandmother, passed away on Christmas day in 1983 from breast cancer, 3 months before I was born), and her niece is a TNBC survivor (diagnosed in 2006, 10 year survivor now this year so she's good), she has 4 other sisters and none have been diagnosed.

They started her off with neoadjuvant chemo first w/ AC (the red devil) and it did take a toll on her to some degree. She beasted that chemo. Minor vomiting, obviously hair loss, fatigued but at times, she did continue her tennis(forgot to mention she is a tennis player)

She completed her 4 AC chemotherapy and she is now on Taxol. she has about 5 more treatments before her surgery in Sept. She goes for a BRCA testing in early August, doctor's believe she strongly believe she is negative and they are going to do a lumpectomu, but will re-assess if she positive and consider a mastectomy w/ reconstruction. The surgeon did an exam this past Monday on the breast and they can't even feel the tumor. She said that, we need to do an MRI in September to see if there is anything left, IF ANYTHING, as there may not be anything left.....YESSS!!!

Here's where things just kinda slowed down a little bit...
Just just just last week, she developed a cough and she had chemo last week and did well. However, last Friday, when she went for hydration, the nurses were concerned due to the cough and the nurse practioner right away wanted to do an x-ray on her chest.

They checked it out and had a dr review, they said that it's not tumor related and hasn't spread but now this week, they didn't administer her chemo this past wednesday and want to do tests on her heart and lungs. they believe there is some inflammation in the lungs due to the chemo. I'm starting to worry again....

My question is any other fighters/survivors experience a cough during chemo treatments or any inflammation in the lungs? Doctors have all been very satisfied w/ how she has been handling the chemo but god knows, we don't wanna see issues when she is ALMOST DONE w/ chemo. It's quite frustrating. Any help or advice would be greatly appreciated.

Thanks so much. I'm willing to lift heaven and earth to make sure my mom stays on this earth because she wants to get back to her life and continue living a normal, happy healthy life.



Replies:
Posted By: Warrior31
Date Posted: Jul 22 2016 at 10:53am
Hi RyB1984,

I'm happy to hear that your mom has been faring relatively well during her chemo treatments. She sounds like a real fighter! AC can indeed affect the heart and so that is why your mom's nurses and doctors might want to check it out. It's very good that she's monitored closely. I myself also had a cough mid-May, about 3 months after finishing radio, and about mid-way through the oral chemo treatment I was getting as prophylaxis (Xeloda). My oncologist freaked me out when he asked for an x-ray and when he then said there was some inflammation in my lungs! However, he said it was probably due to the radiotherapy and ordered some antibiotics.The cough went away and I'm ok now. I don't think it's abnormal to have weird side effects such as inflammation here and there but I think it's great when we can get doctors that are vigilant enough to have these things checked out (even though it is scary for us!). Hang in there!


-------------
Dx at 31 yrs-old 06/03/15; left IDC 1.6 cm; Chemo 28/04/15: 12 weekly Taxol then 4 AC; Lx with SNB 24/11/15; no PCR: 3 mm residual; 20 Rads 20/01-17/02/16. 8 cycles of Capecitabine started 04/01/16.


Posted By: RyB1984
Date Posted: Jul 22 2016 at 8:32pm
Thank you very much for the reply.

Mom came home today w/ good news. Nothing is growing in the lungs and no evidence of anything actually. She met w/ a pulmonary specialist and there is no embolism in the lungs or anything like that. They believe it's actually the chemo itself. Seems as though it may be too toxic for her and they may need to switch the chemo altogether. She will be talking w/ the oncologist on Monday and there is a meeting on wednesday which I will be present at as well to discuss another chemo to be used as she has 5-6 treatments left before 09/27/16 of a surgery date.

It means a lot from your reply and I just want you to know, you have been added to my prayer list. I will continue to pray for you as well as my mom and all the survivors and fighters.

I thank you so very much!


Posted By: gordon15
Date Posted: Jul 24 2016 at 4:55pm
Ry: it's great you are taking so good care of you Mom. My wife has had lots of chemo, but she didn't have lung probs, but I know it can cause that. It kinda ruined her digestive tract, but that's another topic.

In her last radiation, they said it exposes the top outer portion of the lung, while irradiating the lymph nodes in the clavicle area, this was after a single mastectomy and Taxol treatments, so she had 2 weeks where she had mild shortness of breath, but it disappeared, like they said it would, fyi in the future perhaps...

Wishing your Mom the best, and you too........




-------------
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017


Posted By: Jacklin
Date Posted: Jul 25 2016 at 9:30am
Hi Ry, welcome to the forum. Glad you found us but sorry you had to find us. Very glad that your Mom is doing better and that there was nothing else within her lungs. I also had issues with my lungs during A/C treatment - turns out I had pneumonia and an embolism. Apparently the embolism was a result of the chemo as my blood was 'stickier'.  I am significantly better now but still have a lagging cough which could also be from the radiation treatment I just finished. Sounds like you have good and thorough doctors for your Mom. Glad you're there to support her as well. It is a rough journey and I wish you all the best. Know that if you have any questions, please feel free to ask here. Take care, of both of you.

-------------
Dx: Nov. 27/15, TNBC, left breast & lymph, BRCA -; Chemo: Dec 4/15 - Mar 4/16; 4 DD A/C, 3 DD Taxol; BMX/ALND: April 26/16; Stage 3C; Radiation: June 10-July 15/16; 1 cycle Xeloda: Aug 15 - 28/16


Posted By: RyB1984
Date Posted: Jul 25 2016 at 6:31pm
Hello everyone!

Thank you to the responses and help/advice. It is sincerely appreciated.

We just got an update today.
The oncologist called our house today while I was outside doing some landscaping and my mother advised me that they are going to stop the Taxol altogether now. I believe she has completed 5-6 treatments and had 5-6 more to go. But now.....she will no longer continue chemo. It looks as though whatever the chemo caused whatever in the lungs......it is reversible! Which is excellent.....

The oncologist stated that they are cutting chemo short and she's going to do research to see if there is any other chemos for her specific tumor.
As of right now.....surgery....seems to be coming now....and FAST. It looks as though from what she told my mother, they would like to do surgery and as soon as possible. August 1st is the BRCA gene test and we will find out sthe urgery date this week.

Talk about a rollercoaster of emotions. She's reacted just fine while I'm traveling this rollercoaster of feelings. I am a bit concerned that they are stopping chemo altogether. I asked her is there something that they are concerned about to where they are now moving the surgery up so fast and want to do it ASAP? don't get me wrong..... i am actually excited that they going to go in and grab this mutha you know what....but I can't help but be a little nervous that something may be wrong. This coming Friday, they are doing an MRI on the breast to see what's left. The team of Doctors do not seem concerned at all....except on the most important thing....how she's feeling and they told her they loved her.

I asked my mother if this was something that the oncologist has seen before and apparently, she had another patient go thru the exact same thing, where they had to stop the taxol halfway to do surgery and she was fine. Apparently, the taxol has a 5% benefit to her. She got half, so i'm thinking at least she got half of it than nothing for the 2nd chemo.

I won't lie.... i worry....a bit too much and i'm too young to be worrying lol. but with good reason though.

I am wondering if anyone else has been thru something like this where the 2nd chemo was cut short and surgery was completed shortly afterwards.

Thank you ALL again!!!



Posted By: gordon15
Date Posted: Jul 26 2016 at 3:02pm
Ry: it sounds like you have a good team of doctors. Since I have been coming on this forum I have read many adverse reactions to Taxol, and other chemo. 5% benefit is within all the research I have done.
 
Don't know how old your mother is...

My wife is over 60, fyi, I've talked to 5 oncologists since 2008, and they do not place a high priority on gene results over 60 y/o, they want to deal with the immediate- removing the bulk of the cancer, after chemo before surgery if/is tried. They did test for (7) genetic mutations and also androgen receptors/ all came out negative)


Hoping you get more answers after MRI, let us know ok?


-------------
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017


Posted By: Jacklin
Date Posted: Jul 26 2016 at 7:29pm
RyB1984, seems the similarities continue... I also had to stop taxol treatment before completing the full course and then went on to have surgery 7 weeks later. Ideally, surgery 4 weeks post-chemo would have been better, but we couldn't get an operating room and my surgeon had a 2 week holiday scheduled. My surgeon was able to get clean margins despite the delay and I then went on to 25 radiation treatments. 

I appreciate your honesty in sharing how you feel. Your Mom, even though she looks like she isn't, is also riding the roller coaster of emotions. For me, as a mother, I didn't share those deep feelings with my children, only my husband knew/knows exactly where I was at. I wanted to continue being a mom to my (grown) children and that meant providing a shoulder for them to cry on, an ear to listen as they shared their thoughts and fears about my diagnosis or a hug whenever they needed, just be their mom. 

Oncologists are studied doctors, they have knowledge to help your Mom in the best way possible and will look after her. We all struggle with the sense that something's wrong so what you're feeling is normal. Perhaps you could accompany your Mom to the next appointment with the oncologist so that you could ask your questions and settle your mind? Has the cancer centre offered for your family to see a social worker? They can help you process all you are feeling, which is a lot. Learning that someone we love has cancer is scary and frightening, but it's important to acknowledge that and get the support so that you won't live in fear. Living in fear causes us to miss the opportunity to live the moment we have right now.  

Hopefully what I've written here helps. Keep asking questions, share your concerns or vent. We're here to support you as best we can. Keep us posted on how things are going, ok? 


-------------
Dx: Nov. 27/15, TNBC, left breast & lymph, BRCA -; Chemo: Dec 4/15 - Mar 4/16; 4 DD A/C, 3 DD Taxol; BMX/ALND: April 26/16; Stage 3C; Radiation: June 10-July 15/16; 1 cycle Xeloda: Aug 15 - 28/16


Posted By: RyB1984
Date Posted: Jul 27 2016 at 12:09pm
Hello Everyone!

Thank you both for responding to my reply a day or two ago.
I am attending the meeting w/ the oncologist today w/ my mom and aunt.
I appreciate all of your kind words and I will keep you updated after this week is completed as Friday is the day she goes for the MRI to see what is left in regards to the Tumor (or if there is anything left)

i'm hoping we get a surgery date soon as today marks 2 weeks since she has had any chemo. I'm going to bring up that question in regards to not going anymore than 30 days since chemo to start surgery this afternoon!

Prayers up!

Be back soon!


Posted By: RyB1984
Date Posted: Aug 01 2016 at 1:47pm
Hi Guys!

So last week, we had the meeting and the oncologist strongly believed that no more chemo is needed at this time. She states that even though that chemo has stopped, it does take the chemo time to get out of her system, meaning that the chemo is still fighting the tumor. The overseeing Dr and Oncologist also did an exam on her and still....nothing. They can't feel the tumor and nothing has showed warning signs or anything they are worried about. They truly believed that the MRI will really show how much of the tumor is left OR if there is anything left. It's really all about surgery time now! this coming Wednesday is 3 weeks since she had chemo and they stated that it's typically about 4-5 weeks before the surgery will happen.....so that means its gonna happen VERY soon. But...of course...the surgeon has a 2 week vacation coming... of course that has to happen at this time. I'm hopeful they can get her in ASAP first before she leaves.
She did go for the MRI this past Friday and I'm just hoping we can get the result of that ASAP. Prayers up that its either VERY MINIMAL or nothing left!!!

My mom was a little concerned as this is a period where she's not having any chemo and the oncologist stated that she will seek a second opinion as my mom was bringing it up several times during the meeting. I have really come to enjoy this oncologist and they really are keeping an eye on her.

Today....she is (as we speak) getting tested for the BRCA gene and hopefully by the end of this week, we will have the result of the MRI.


Prayers, prayers prayers up! I am remaining hopeful as this month is the month of surgery (also that I will be there for surgery w/ her as there is now a possibility I will be on the west coast for vacation) and the beginning of hopefully being cancer-free!


I will be back later this week with hopefully good news. Thank you everyone!


Posted By: gordon15
Date Posted: Aug 01 2016 at 5:24pm
Ry: Great to hear from you. My wife had chemo before surgery ("neoadjuvant") sorry if bad spelling... and after, she had to wait almost 8 weeks (2 months) for single masectomy and lymph nodes excision, because one of the team from her surgeon was on vacation. We don't dwell on what 2-3 weeks might mean, in hindsight.

Some bumps- in -the- road need to be accepted.

Yes, the chemo continues to work. (it has a duration, but I'm not an expert on how long)

Having a good oncologist is soooo great. One that you trust and is straight-forward and not wishie-washie.




-------------
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017


Posted By: RyB1984
Date Posted: Aug 03 2016 at 4:37pm
So...... I have a major update.

We got the results from the MRI today. I accidentally called during the appt and my mom put me on speakerphone.

The DR. said "hiii how are you" and i said, "hi dr. im good and yourself" and she said "im going good. So we examined the MRI and the Mass is.....COMPLETELY ALL GONE."

I let out the biggest LOUDEST YESSSSSSSSSSS in my entire office and jumped out of my seat. Everyone looked at me and i said, "ummm let me get off this phone cuz i look like a fool." they laughed and i hung up and i announced in my office, THE CANCER IS ALLLLL GONE!!!!!!

I couldn't wait to get home to my mother and hug her. She's getting a glass of champagne tonight!!!

Surgery date is 08/30/16 & BRCA gene test was done today!!!


thank you thank you thank you thank you thank you ALLLLLL for your prayers!!!!!!!!!!!!


Posted By: Jacklin
Date Posted: Aug 03 2016 at 4:52pm
Awesome news, congratulations!!!!HugThumbs UpClap

-------------
Dx: Nov. 27/15, TNBC, left breast & lymph, BRCA -; Chemo: Dec 4/15 - Mar 4/16; 4 DD A/C, 3 DD Taxol; BMX/ALND: April 26/16; Stage 3C; Radiation: June 10-July 15/16; 1 cycle Xeloda: Aug 15 - 28/16


Posted By: gordon15
Date Posted: Aug 04 2016 at 5:55pm
Great news.
Perhaps she can get by without radiation, ? Surgery end of month is certainly a schedule that is "soon" by most standards, so that gives her time to heal after chemo and get her bloodcell count up also, keep us informed, ok?






-------------
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017


Posted By: Cavitybug101
Date Posted: Aug 06 2016 at 11:03am
I just had my MRI done after chemo treatment. My cancer mass is gone but the lymph nodes in my arm pit are still there. The surgeon stated I can a nucular device place in my breast to see if the lymph nodes in my arm pit all need to come out and witch ones. Has anyone else had this done? And was it helpful.


Posted By: gordon15
Date Posted: Aug 06 2016 at 6:50pm
It's called a Sentinel Node Biopsy (SNB)(unless you mean something else?) My wife's had 2 of those.

My wife got lymphedema in 2008 after they took I think 7 nodes out, recent studies show it's often unnecessary to remove them all and risks getting lymphedema, you should ask about this, but it is an amazing medicine, nuclear medicine since they can target a smaller incision and know right where the lymph nodes in question are.


-------------
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017


Posted By: Cavitybug101
Date Posted: Aug 07 2016 at 11:50am
Thanks so much for the info. Thinking I will do the nuclear substance to see what lymph nodes need to be removed in my armpit vs removing everything in armpit (lymph nodes)


Posted By: gordon15
Date Posted: Aug 07 2016 at 1:43pm
I find it a little disturbing you are indicating the surgeon is giving you a CHOICE as to have sentinel node biopsy vs node resection(I think it's called) I thought that was old-school.
Maybe I misunderstood you.
The SNB is not painful, they numb for the shot, of course it wasn't my breast so that's easy to say, but I was with my wife. The radioactive dye, after you sit for an hour, shows them on a special imaging machine where the lymph flows first (sentinel node) allowing the surgeon to pinpoint the location, plus when they remove it(them) they are blue-dyed. The half-life of the radioactive is only about an hour, I think they said only about 30 min after procedure in your body, don't quote me on this, it's pretty amazing modern medicine.
My wife's surgeon showed me in pre-op the copy of the imaging, showed (2) not just one lighting-up. The oncologist had told me "she will remove all of the nodes that look abnormal" We already knew from a PET/CT scan at least 4 were abnormal, one was over 1cm large, most lymph nodes at .5cm or less, plus the MRI showed the fatty hypia around the nodes (3-4) was gone, which is a dead-giveaway they look for for cancer, the cancer takes over it. Plus her onco, surgeon, and radio-oncologist all did physical exams, confirming they could feel enlarged nodes in the armpit, the radio-oncologist (he's the radiologist but also higher-up) felt 4, not 3, and he turned out to be right.

She ended up removing 5 nodes, I assume all of the first line of nodes, and the pathology report showed "evidence of necrosis due to neoadjuvant chemotherapy" in 3-4, but they don't come right out and say the chemo killed cancer that was there. They say pathological complete response. pCR



-------------
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017


Posted By: RyB1984
Date Posted: Aug 07 2016 at 5:27pm
Thank you all for the prayers. I will keep you updated as things go. She just saw the pulmonary specialist a few days ago and her oxygen level went up so they are changing her dosage on the steroids so that they can ween her off.

she has pre-op on august 24th, then take some kind of nuclear test the morning of august 30th which is the same day as the surgery.
No one is ever ready for surgery but im hoping all goes well. Unfortunately, I will be out of town for the surgery ....

keeping you all prayers!!


Posted By: gordon15
Date Posted: Aug 07 2016 at 6:45pm
Thanks for the update , these modern day surgeons are amazing, any complications worry you please ask.....ok?


-------------
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017


Posted By: RyB1984
Date Posted: Aug 13 2016 at 7:03pm
Hello everyone! I hope everyone is doing okay. I did try to come to the forum for a few days straight and I thought the site was closed down. I guess it went down or something....

Not really a concern, but I just noticed that my mom's eyebrows are getting thinner and I brought that to her attention. She agreed and said her eye lashes are going away as well. She still looks absolutely beautiful and i make sure to tell her that and she knows....its all gonna come back.

Anybody on this board experience this AFTER chemo is done completely?

Hmmm...


Posted By: 123Donna
Date Posted: Aug 14 2016 at 9:52am
I had the same thing happen after finishing chemo.  My eyebrows had thinned during treatment, but I still had my eye lashes.  A couple of weeks after finishing, the lashes started falling out until they were all gone.  Almost immediately new ones started growing back.  It was a big shock as I wasn't expecting to lose them after treatment was over.  It's usually just temporary.  I know some women whose lashes didn't come back as thick as before that tried Latisse eyelash treatment.  

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: Jacklin
Date Posted: Aug 14 2016 at 6:34pm
My eyelashes and eyebrows all fell out after chemo was finished, and, like Donna, it was a huge shock to me. I figured that since they hadn't fallen out, it wasn't going to happen to me. Not so. Mine also grew back very quickly although my eyelashes are not as thick as they were before but it doesn't bother me. I'm alive and that's what's important to me and my family. 
Jacklin


-------------
Dx: Nov. 27/15, TNBC, left breast & lymph, BRCA -; Chemo: Dec 4/15 - Mar 4/16; 4 DD A/C, 3 DD Taxol; BMX/ALND: April 26/16; Stage 3C; Radiation: June 10-July 15/16; 1 cycle Xeloda: Aug 15 - 28/16


Posted By: snugltz
Date Posted: Aug 14 2016 at 9:54pm
My eyelashes on top came back but they are much thinner.  The bottom ones are so sparse I cant even get them to show with mascara.  But as Jacklin said,we are alive. 

-------------
1 cm, 0/2 neg nodes, lumpectomy 6/16/10, cytoxin/taxotere 4x every three weeks, rad start 11/8 33X


Posted By: luzmia
Date Posted: Aug 15 2016 at 3:55pm
Good day,
My sister's eyelashes as well as eyebrows started falling out around the 3rd round of chemo. She had TC X4.  It's been 1 year and so far her lashes grow out but seem to fall out soon after, the eyebrows are not growing back at all but this problem can be easily fix with a eyebrow corrector pencil and eye lash extensions.  She is not to happy about this side effect but it could bee a lot worse.  Her hair has grown back and may i say I love it, its curly and heavy. So far she has had 3 hair cuts all ready. 
I always read all the post and pray for all to have a quick recovery.  My prayers to all you strong ladies.
Love.....
Luzmia 



Posted By: Rsprite3
Date Posted: Aug 16 2016 at 5:34pm
Hi. I have a question. How long does the fatigue last? Im so tired all the time. I get up eat breakfast fall asleep again. I make myself do some chores like feed my chickens which is easy. Then Im tired again. Cant walk very long without having to sit down. Finished radiation june 2.
Anyone else have this problem?


Posted By: Cavitybug101
Date Posted: Aug 16 2016 at 5:54pm
How long are you off work after a mastectomy?


Posted By: Cavitybug101
Date Posted: Aug 16 2016 at 6:00pm
Rsprit3 I have only had Chemo and now surgery. What I have been told radiation can make you fatigue. But not sure how long is normal I would call your doctor and make sure your fatigue is normal. My radiation is after I heal from surgery. Good luck!


Posted By: Cavitybug101
Date Posted: Aug 16 2016 at 6:02pm
I have surgery next week and the surgeon office is on vacation and was just wondering work was asking if I had any idea when I would be back


Posted By: 123Donna
Date Posted: Aug 16 2016 at 7:17pm
I was off 4 weeks following my mastectomy.




-------------
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: Cavitybug101
Date Posted: Aug 17 2016 at 12:32pm
Thanks You so much 123Donna


Posted By: snugltz
Date Posted: Aug 17 2016 at 1:04pm
I had radiation every weekday for two months.  I drove myself many times and it is a 45 minute trip each way.  Never was particularly tired.  I think everyone has different reactions.  To me it was a walk in the park next to chemo.  Didn't even get red until the last week.  Get yourself an aloe plant.  Not the gel you buy in the store.  It kept my extremely sensitive, very pale skin from burning.  I still have my plant and give leaves to those undergoing radiation.  It has helped them all. 

-------------
1 cm, 0/2 neg nodes, lumpectomy 6/16/10, cytoxin/taxotere 4x every three weeks, rad start 11/8 33X


Posted By: Jacklin
Date Posted: Aug 17 2016 at 2:39pm
I'm going to second the aloe plant concept. I'm blue eyed and blond and the radiation oncologist said I would probably burn badly. I didn't and she was surprised. I used saline soaks, aloe and then flammazine when prescribed.  I also went shirtless at home, I feel that the lack of friction was a major piece in my healing.  I also found radiation easier for me than chemo, it was just the daily drive (an hour each way) that was tiring for me. I typically took a short nap each afternoon, but that could also have been from the heat of summer.



-------------
Dx: Nov. 27/15, TNBC, left breast & lymph, BRCA -; Chemo: Dec 4/15 - Mar 4/16; 4 DD A/C, 3 DD Taxol; BMX/ALND: April 26/16; Stage 3C; Radiation: June 10-July 15/16; 1 cycle Xeloda: Aug 15 - 28/16


Posted By: Rsprite3
Date Posted: Aug 17 2016 at 6:51pm
Luzmia thank you for your prayers. We all kind of have to know ourselves agai after treatment. "The new you" . I look so different now its quite a change. Thank you for the reminder it could be so much worse.  Quite true. I look at everything different now too. Just enjoying the little things like watching the hummingbirds out my window. Vollunteering with relay for life helpin other cancer warriors to know
That they are survivors even while in treatment.
Thankful for all of you here and all the people Ive met.
Tbis new life isnt good or bad its just new and different😋😃


Posted By: RyB1984
Date Posted: Aug 17 2016 at 8:54pm
Just got another update.....

Got the BRCA gene test back today and I believe they did test on all 16 different types of test/genes....whomever explained it to my mom....but all came back negative....which the oncologist and surgeon figured.

Next up......SURGERY! 08/30/16!!!


Posted By: 123Donna
Date Posted: Aug 17 2016 at 9:38pm
Originally posted by Cavitybug101 Cavitybug101 wrote:

I have surgery next week and the surgeon office is on vacation and was just wondering work was asking if I had any idea when I would be back

There have been some previous threads about mastectomy surgery and tips offered by members.  I'll post the threads and you can read through them and click on any links that might be helpful.  Wishing you the best!

http://forum.tnbcfoundation.org/mastectomy_topic9775_post100064.html" rel="nofollow - http://forum.tnbcfoundation.org/mastectomy_topic9775_post100064.html

http://forum.tnbcfoundation.org/mastectomy-next-mondayadvices_topic10507_post107681.html" rel="nofollow - http://forum.tnbcfoundation.org/mastectomy-next-mondayadvices_topic10507_post107681.html

[QUOTE=Grateful for today]
Think the great thread you may be referring to is: 
    http://forum.tnbcfoundation.org/bmx-in-7-days-and-scared-to-death_topic10301.html" rel="nofollow - http://forum.tnbcfoundation.org/bmx-in-7-days-and-scared-to-death_topic10301.html  
There are lots and lots of good ideas and suggestions on above link. 

See the TNBC thread: 
              http://forum.tnbcfoundation.org/the-after-surgery-tips_topic3104.html" rel="nofollow - http://forum.tnbcfoundation.org/the-after-surgery-tips_topic3104.html  

If others remember/find other good mastectomy related threads, please post.

I had posted some thoughts and suggestions on another thread awhile ago. 
Some thoughts on mastectomy surgery............... 
Pick and choose what seems helpful. Disregard the rest. 
    Call your surgeon's office about how to get a both arm measurement before surgery. 
        Some places use a tape measure. Some use a perometer. Some physical therapy departments 
        and some vascular departments do the arm measurements. 
        Maybe...hopefully your surgeon's office already has a plan for this. 
        Reason for pre-surgery arm measurements: 
                   Baseline to have in case there is a question of swelling or lymphedema in the future. 
                         (most women will not get lymphedema, but good to have as a baseline) 
                   Risks for lymphedema: ALND/sentinel node biopsy (less risk than ALND) /mastectomy/ 
                             had surgery in the armpit before now/radiation to the lymph node areas 
                             after lymph node surgery       
        Many do not have this done.......so if not possible to do, don't worry.....but worth asking 
               about. 
        If above not done, with body facing the wall, mark on a wall or closet door etc 
               how high both arms can reach above straight up........this way you know what you 
               could do before surgery......not everyone   can reach straight up to a full 180 degrees 
               (flexion) before surgery. 
    Think about your "healing cave".   When you get home, where will you spend time? 
        Do you have a recliner?    If not, is it possible you can borrow one? 
        Some people have suggested that a "recliner" is almost a must for s/p double mastectomy.....
              and helpful for unilateral mastectomy 
        If not a recliner, can you adapt a chair with pillows etc for easing getting into and out of? 
        Plan on what to have nearby in advance.....helpful things as well as "healing" things. 
    Accept ALL help offered esp. the first week. One may be able to manage by oneself if that 
       is the only option. Any help makes the recovery so much easier. 
       Also you can always cancel any planned help...........you are in charge of your recovery plan.      
    Make list of what you will bring to hospital on surgery day.   Pack bag before last minute. 
                 Pack chap stick for dry lips, a small notebook, pen. 
    Get Bath wipes (optional but a big help) from drug store. 
               (Not baby or hand wipes....personal bath wipes) 
               May be helpful the first few days instead of washcloth/towel/soap. 
    Go thru your clothes and find a few really easy to get into tops for the first week or so. 
               Depending on weather, zippered light fleece tops might be good. 
               Anything zippered or


-------------
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: gordon15
Date Posted: Aug 19 2016 at 7:31pm
Ry------thanks for update, keep in touch..


-------------
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017


Posted By: Jacklin
Date Posted: Aug 20 2016 at 3:26pm
All the best Ry with your upcoming surgery. Let us know how you're doing, ok? Know that I'll be praying for you.

-------------
Dx: Nov. 27/15, TNBC, left breast & lymph, BRCA -; Chemo: Dec 4/15 - Mar 4/16; 4 DD A/C, 3 DD Taxol; BMX/ALND: April 26/16; Stage 3C; Radiation: June 10-July 15/16; 1 cycle Xeloda: Aug 15 - 28/16


Posted By: RyB1984
Date Posted: Aug 20 2016 at 4:54pm
thank you both Jacklin and Gordon!

I will keep you all updated and will continue prayers to you all as well!!!


Posted By: kirby
Date Posted: Aug 22 2016 at 11:52pm
Rsprite,

Be sure and have your thyroid checked. That could be making you tired. There are some really old threads about that. It seems fairly "coincidental" that many of us have had some issues with low thyroid after treatment.

Kirby


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

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads


Posted By: Rsprite3
Date Posted: Aug 23 2016 at 1:11am
Thank you Kirby. Im romnessprite had to change my name for the 3rd time on this site because i keep getting locked out. So thats why Im R3😁.
   You are right I have had low thyroid in the past. I will have it tested again.
Ry keep us updated on your moms surgery.
   I just got over an infection and they had to remove the implant and now the flat skin is puffing up again. I was useing my arm alot to sand a bench Im refinishing so I hope thats all it is. I hate not being able to do stuff I used to do.


Posted By: 123Donna
Date Posted: Aug 23 2016 at 8:02am
Rsprite3,

I agree with Kirby about having your thyroid checked.  I found that after I finished radiation I was diagnosed as hypothryoid.  The rads affected my thyroid and now I have to take medication for it.  Here are the threads:

http://forum.tnbcfoundation.org/thyroid-issues_topic9843_page1.html" rel="nofollow - http://forum.tnbcfoundation.org/thyroid-issues_topic9843_page1.html

http://forum.tnbcfoundation.org/after-chemo-cholesterol-thyroid_topic6991_post62381.html" rel="nofollow - http://forum.tnbcfoundation.org/after-chemo-cholesterol-thyroid_topic6991_post62381.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: Ssam
Date Posted: Aug 28 2016 at 11:57am
Can anyone point me in the right direction please for more info on what ladies here have done if they find out they are BRCA positive? Thanks everybody.

-------------
Dx Dec 2015. Stage 1 Grade 2.
6mm tumour. No lymph nodes involved. No chemo. 20 rads. Age 50.


Posted By: 123Donna
Date Posted: Aug 28 2016 at 12:32pm
Ssam,

The BRCA test in the United States is usually done in the oncologist's office.  It's a simple blood draw that they send off for testing.  Here's a link to BRCA testing information in the UK:

http://www.cancerresearchuk.org/about-cancer/type/breast-cancer/about/risks/breast-cancer-genes" rel="nofollow - http://www.cancerresearchuk.org/about-cancer/type/breast-cancer/about/risks/breast-cancer-genes

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: Ssam
Date Posted: Aug 28 2016 at 12:42pm
Thanks Donna, I had the test done a week ago. 3 more weeks to wait for the results here in the UK. I don't fit their TN profile so the genetic counsellor said she expected my results to be positive, feeling rather wobbly about it all today.

-------------
Dx Dec 2015. Stage 1 Grade 2.
6mm tumour. No lymph nodes involved. No chemo. 20 rads. Age 50.


Posted By: 123Donna
Date Posted: Aug 29 2016 at 8:33am
Ssam,

Please let us know when you get the results.  I'm sure the waiting part is tough.

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: RyB1984
Date Posted: Aug 29 2016 at 3:17pm
I cant believe the time is here but tomorrow is the day of the surgery for my mom. I kindly ask as I cant be there...that if you wouldnt mind, lifting my mom up in prayer and that any fear she has.....that she is comforted that she has the best surgeon and that everything will be okay. She is my everything.


Posted By: AZNikki
Date Posted: Aug 29 2016 at 11:19pm
Originally posted by RyB1984 RyB1984 wrote:

I cant believe the time is here but tomorrow is the day of the surgery for my mom. I kindly ask as I cant be there...that if you wouldnt mind, lifting my mom up in prayer and that any fear she has.....that she is comforted that she has the best surgeon and that everything will be okay. She is my everything.



DoneHeart


-------------
DX 8/27/15 @ age 45-TNBC Stage IIA 1.6cm 3/7 nodes KI-67 99.59% BRCA-
Right Lumpectomy 9/4/2015 DD AC x 4 Taxol x 12, 30 rads inc. 5 boosts. Finished 4/5/2016


Posted By: Kellyless
Date Posted: Aug 31 2016 at 6:29pm


-------------
IDC, 2.2 cm, Stage IIb,lumpectomy 1/30/09 ACx4,Tx4 36 rads
6/1/17 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: RyB1984
Date Posted: Sep 03 2016 at 7:09pm
Hello everyone!

So mom's surgery is complete. I was on pins and needles all day....even to the point where I had hiccups throughout the ENTIRE day that would start, stop....then start again an hour later then stop...then come back again...then stop...and so on lol

Apparently, the surgery went really well.
They removed the tissues of where the tumor WAS. The incision is kind of under the breast and under the armpit. Apparently, it was a LONG/ALL DAY surgery where they had to insert a wire and then do the dye procedure as well to create a path for the surgeon to check.

Apparently, only 1 lymph node very slightly lit up. She checked very thoroughly with the lymph nodes. I'm not sure what the general procedure is but I was told at the pre-op appt, normally 2 are taken out. Well, she checked the second one and there was nothing there, so she left that one in and took the one that lit up out.
Everything was sent off to the pathologist and we should be getting the results as some point this month. We will be meeting with the entire team again and finally....I believe radiation will begin.

I was very relieved and happy when I came home LATE last night from vacation and was greeted with her beautiful smile and a hug :)


Posted By: gordon15
Date Posted: Sep 03 2016 at 8:36pm
Ry: thanks for the good news! Your Mom is in good hands ! I believe they only removed the one lymph node to not put your Mom thru perhaps unnecessary surgery. If the 2nd one is not abnormally enlarged, that's great news.
Your Mom is lucky to have you, keep us informed, ok?


-------------
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017


Posted By: RyB1984
Date Posted: Sep 14 2016 at 6:26pm
Hello Everyone!

I hope everyone is doing well.
So, today we got the pathology report. According to the surgeon, it was a VERY GOOD report and she was very VERY pleased with it.
So here's what we got. Apparently, my mother did not have a PCR and there is an explanation for this. I'm not sure if you remember my post back at the end of July/early August, but they had to cut off her Taxol after 6 treatments because it was doing something to her lungs. They believe that IF she had continued with the Taxol and did the full 12, then yes....she would have had a PCR. The chemo eliminated 90% of the tumor with only 10% left. The surgeon went as far as she could to remove ALL of the tumor/or any tissues of where the tumor was....which she did but it was deep and it's not hurting her at all.
The tumor has not grown and is not growing at all. It's not even close to being 1cm. Much less than a 1cm tumor.
According to them, it's just THERE. It is due to it being very deep as originally, the tumor was very deep but was not touching the chest wall. The lymph nodes are confirmed 100% negative and the cancer cells/tumor never made it to the lymph nodes. The margins were nice and clean.
The next plan of action is....radiation to kill the remaining 10% of the tumor and then there is strong talks (we will know more on Monday) that she will be placed back onto chemo...but more of an Oral chemo.

Overall, mom is somewhat bummed that she will most likely be placed back on chemo yet again. I was a little bit bummed that there the tumor is not completely gone, but I am relieved that radiation is next and that another chemo will most likely occur after radiation as there will be medicine to clean up any traces of cancer that could be left.

Overall.....we are very pleased, happy and relieved this journey is almost over. The surgeon is VERY happy and so are the radiologist. I'm sure the oncologist is very happy as well once we see her.

More updates to come!


Posted By: RyB1984
Date Posted: Sep 25 2016 at 5:08pm
Hello everyone!

So I've got an updated....and also clarification.
So its either my mom heard it wrong or the surgeon didn't explain it clearly.
In regards to the remaining cancer.....there is no remaining cancer currently in my mother's body. When they cut her chemo off after 6 treatments of 12, there was 10% of the tumor left (90% was eliminated). They do believe that if she could have tolerated the Taxol, the tumor would have definitely been cleared up completely and she would have had a PCR.

So by the time the surgeon was able to do the surgery, because it was so deep....yes there was 10% left. So that makes more sense instead of there still being cancer in her body currently. So currently...right now there is no cancer in her body. This was clarified by the oncologist.

The next phase of treatment and i'm not sure if anyone has gone through this before:

Radiation starts not this week but next week. It will be about 3-4 weeks of radiation, 5 days a week....but here's another twist which we did not expect.
The oncologist says a form of "insurance".....she wants to put her BACK on chemo for the 6 weeks she didn't have the first time and she will chemo AND radiation AT THE SAME TIME! Obviously, its just a way of making sure any left over cancer cells that MIGHT be around...can be killed while she goes through radiation.

We did not expect to hear that and it was definitely overwhelming. I can only imagine what my mother is thinking.

She will put on the oral pill, capecitabine chemotherapy.
She showed up the statistics and it's like a win-win situation. 89% survival without going on chemo again, where it will increase to 93% with chemo and radiation at the same time. Obviously, we are going for the 93%.

So there's the update.

I'm taking a leave of absence starting this friday from my job to guide and care for her for the remaining treatments going forward.

Has anyone else experience of doing chemo AND radiation at the same time?
Any advice or information is greatly helpful.


Posted By: Tulips
Date Posted: Sep 25 2016 at 7:52pm
Hi RyB,

The old brandname of capecitabine is Xeloda.  A lot of people on this forum use the name Xeloda instead of capecitabine.  If you scan through the forum, there are several threads that relate to Xeloda, including a long thread with a title like "Residual cancer...what to do?"  and others.  As I recall, there were several posters who did simultaneous Xeloda with radiation.  I think was was Warrior31, but that's just going from memory.  If I remember correctly, she did have stronger radiation burns, possibly due to the simultaneous nature of the treatment.  I believe I've seen others do it without issue.  I think there are some clinical trials that are testing rads with concurrent Xeloda or Carboplatin.  So it does happen.

As far as side effects of Xeloda, for the majority of people, it is far easier than ACT chemo.  Many people call it "chemo-lite" because it is much easier (plus no hair loss).  That being said, you may notice that one of our forum favorites, Jacklin, did recently post about having had a bad reaction, so of course that can happen.  But in most cases, if someone is feeling strong side effects, the MO can just lower the dose and the side effects become more manageable.  The side effect profile is slightly different from ACT chemo.  The most common side effects are diarrhea and hand/foot syndrome (HFS).  I didn't experience any GI issues whatsoever during my 8 rounds of Xeloda, and only mild HFS during rounds 3 & 4 (and very very very mild at other times).  Overall, I didn't really feel like I was on chemo because it's a pill, so no infusion center, plus hair grows, plus no nausea, neuropathy, etc.  So it is hard to predict what will happen with your mom, but it does seem like the side effects are *typically* manageable, and if not, doses can be tweaked to make them so.  But there can be unusual and extreme reactions, which our friend reminded us of.

Your mom is lucky to have such a wonderful, devoted daughter.  You may find that she is totally fine during this next phase.  I was totally fine during radiation, kept teaching, piece of cake.  Only got red towards the very end, and it was absolutely fine, just like a sunburn.  I had no problem driving myself to radiation.  And for me, Xeloda was also a piece of cake.  So it's nice you'll have time off to spend with your mom, but you may find that is just a nice thing, and you two can enjoy each other, but that your mom is completely able to manage by herself.  Everyone is different and it's so hard to predict.

Good luck to your mom!
Tulips


-------------
Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016


Posted By: RyB1984
Date Posted: Oct 03 2016 at 11:41am
Thank you very much Tulips for the comments about this chemo.

She is starting the chemo today and I'm hoping she breezes through this as well as radiation at the same time with minimal side effects as possible. Also...I am her son just an FYI lol!!!!! A little hard to tell through the internet hahahahaha.

I am going to check out that thread as I want to learn as much as possible about this chemo as we also received information about it through the doctor as well.

Prayers to you all and never EVER give up!!! You all are in my thoughts whether you are currently fighting now or a survivor as this month as most of us, if not all of us know that this month is Breast Cancer Awareness month!



Posted By: RyB1984
Date Posted: Feb 27 2017 at 7:17pm
Hello everyone!

It's been quite some time!
I hope everyone is doing well these days.
I wanted you to all that I still send you all prayers and I do quite often still come to the forum and check on everyone. Just haven't really had the time to really respond or give you all an update about my mother.
BUTTTT....if you have a quick second here is the update:

Quick update: Mom did as best as she could and beasted the radiation. It was tough and the during the last week, she had to have a few days postponed because she was badly burned. She finished everything the day before thanksgiving.

Right now, she is on the final 2 week dosage of the Xeloda and she is .....DONE!!! finally, this journey is over and she will be back to going back and living her life again.
Her radiologist appointment was last week and they told her "we will see you in a year."

Her mammogram is coming up March 10th and today we had an appointment with the oncologist. Everything seems to be going the way we all hoped.
At each appointment, they do an exam and no new lumps or anything. According to mom, she still has some breast pain and apparently, its still somewhat swollen.

As this journey is nearing, me personally, I am now shifting the focus back to me and getting my life in order as well as making major major changes. I just acquired a New job FINALLY in my field, however I am ready to relocate and start over fresh.


Overall...everything is going exceptionally well for her and her NEXT grandchild is coming late March/early april.

How is everyone? Please let me know.


Posted By: gordon15
Date Posted: Feb 28 2017 at 5:33pm
Thanks for your update on your mother... I don't think you should be overly concerned about the radiation, I'm just telling you about my experiences where my wife has had lots of radiation...I think it kills stray cells that might become a tumor, (I am not a doctor, please do not sue me)
I'm not familiar with Xeloda, it has not been recommended for my wife. I know it has benefited patients.
My wife has had some aches and pains for 6 months, after procedures ,it's not always a sign that's something is wrong...
It's great to hear you have been looking out for your Mom, and have a new job that you are excited about, it's very hard to juggle the two, and want to know how things are going for your Mom and you in the future...


-------------
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017


Posted By: Tulips
Date Posted: Feb 28 2017 at 8:54pm
Hi RyB,
Thanks so much for the update.  It's so great to hear that your mom is finally almost done!  One long year, of course, but obviously the worst is over.  I hope she has been managing well on the Xeloda.  Finishing X is such a funny thing....it's not as obvious as your last day of radiation or infusion chemo, where you might ring a bell, or say goodbye to some of the awesome people who have been taking care of you, gift-giving, etc.  It's a big deal to finish Xeloda, but since it's just pills you take at home, it's a more private wrap up.  But my family went out to dinner to celebrate, and there might have been some champagne involved ;-)  I hope your mom finds a way to celebrate.

You have clearly been an A+ son, and it's great to hear you have moved some attention on to your plans and a new job--congratulations!  Also, I see you are in RI--me, too.  Did your mom do her treatments in RI or does she live elsewhere?  I was thrilled with my care, although I got second opinions at Dana Farber.  I feel very lucky that our little state has so much to offer.

It may feel strange to your mom, moving on from so much attention on her cancer (both medically and personally.  Medically, she will fairly quickly move into a pattern with far fewer appointments than she's been used to, and personally, I think it's common for people to stop asking so much about your cancer and sort of move on).  This is a wonderful change--it's freeing and it's great to expend energy on other things!  At the same time, it's not unusual for some people to have a slightly hard time adjusting back to normal life, especially regarding fear of recurrence.  There's a real range of how people feel about this, but it sounds like your mom is a high energy trooper, so I bet she'll do just great.  It makes sense for you to put your energies into your new job now, and trust that your mom will thrive!

Take care,
Tulips


-------------
Dx April 2015 IDC TN 2.2 cm, Grade 3, Chemo started May 2015: Taxol/Carbo then AC, Lx with SNB Nov 2015, 33 Rad Dec 2015-Feb 2016. 6 months Capecitabine starting March 2016


Posted By: RyB1984
Date Posted: Apr 04 2017 at 5:17pm
Hello everyone!

Back again.
I still have been a lurker and keeping track with all of you.
I hope you all are doing well and for those that are struggling and fighting, i am still praying for you all.

Tulips- I bet any money we probably have crossed paths and didnt even realize it. Yes, we went to the cancer center at RI Hospital. E X C E L L E N T place!!!

I have great news everyone. Mom completed her Xeloda a few weeks ago and close to a month ago, she had her 3D mammogram. We were concerned because she was still tender in the area.
Got the results, RIGHT away and through the mail.

No evidence of cancer in EITHER breast. She is officially completed all of her treatments will see her oncologist every 3 months and her next mammogram in September.
I celebrated my birthday ALL month long and got to have her here with me which is a blessing. Another great blessing for her...is she is a grandmother again.

She's finally able to get back to her life as well as start rehabbing her arm for tennis again. Today, she had her port removed.

Just this time last year, I was secretly having break downs every night because I was faced with maybe not having ANY parents with me anymore and 1 year later because of the support from friends, family, even YOU ALLL...and of course, GOD....she's here, healthy and cancer free.

I thought you all should know as you all have been so caring and concerned on this journey.
I thank you all and will keep in touch.

Sending much love.


Posted By: gordon15
Date Posted: Apr 04 2017 at 6:18pm
RyB198 : thanks for the update on positive response to Xeloda, it means a LOT to hear your update! That is amazing and I will pass on to my wife's doctors, so glad to hear from you! G


-------------
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017


Posted By: 123Donna
Date Posted: Apr 04 2017 at 6:22pm
RyB1984,

Thanks for sharing!  I'm so glad things are looking up for you and your mom.  Yes, a year can make a big difference.  Getting the port out is a big step.  Hope your mom gets to enjoy tennis again.  Stay in touch.

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: AZNikki
Date Posted: Apr 05 2017 at 12:29am
So happy for you and your mom! Take care of yourselves Hug

-------------
DX 8/27/15 @ age 45-TNBC Stage IIA 1.6cm 3/7 nodes KI-67 99.59% BRCA-
Right Lumpectomy 9/4/2015 DD AC x 4 Taxol x 12, 30 rads inc. 5 boosts. Finished 4/5/2016


Posted By: Jacklin
Date Posted: Apr 05 2017 at 8:50am
RyB1984: Congratulations!!! So incredibly happy for you both. See how good God is, all the time? Life each day for the gift that it is and thank you for letting us know how you're doing, always good to learn the success that people are experiencing fighting TNBC. 



-------------
Dx: Nov. 27/15, TNBC, left breast & lymph, BRCA -; Chemo: Dec 4/15 - Mar 4/16; 4 DD A/C, 3 DD Taxol; BMX/ALND: April 26/16; Stage 3C; Radiation: June 10-July 15/16; 1 cycle Xeloda: Aug 15 - 28/16


Posted By: RyB1984
Date Posted: May 01 2017 at 7:08pm
Hello Everyone!
I hope everyone is doing well here.

I just wanted to update you all on things.
My mom completed treatment during the 3rd week of March and she was doing so very well. No evidence of cancer.

Close to 2 weeks ago (it will be 2 weeks this coming Thursday/Friday), my mother was complaining of some shortness of breath. Last Monday, under the guidance of her primary, I brought her to the Hospital here.
They did a chest x-ray and a cat scan and the only thing they could find was fluid outside of the right lung. No new tumors or anything. Oxygen levels were always between 96%-100%.
After extracting the fluid and doing a test on every single thing......the fluid has cancerous cells (we just found out today). We ALL are so shocked. I don't even have words for this.

It's called Pleural Effusion. I've googled this (and its the worst thing I've done) and I'm not sure what to say or think. The oncologist bets money that it's her original breast cancer that moved and somehow survived. They say it can be treated and we are just awaiting the pathology report in regards to staging, no nodes on the lungs, she will have scans next week of the entire body to see if it has spread anywhere and the echocardiogram on Thursday. Port will be placed back in and she will be put on chemo again. She is being referred to the Dana Farber center in Boston.

Has anyone ever heard or dealt with this? I. am. scared. more than anything for her. Although she's shocked and trying to wrap her head around this, Her spirits are most certainly still up and she is determined to fight. The oncologist did say it can be treated.
Any useful information would be great guys. I'm even coming to you all for cyberhugs.


Posted By: snugltz
Date Posted: May 01 2017 at 10:03pm
I know nothing of this.  never heard of it.  I wish I could do something for you but I will give you are great big cyberhug.  Your mom too.  Im so sorry.  But if doc says its treatable hold on to that. 

-------------
1 cm, 0/2 neg nodes, lumpectomy 6/16/10, cytoxin/taxotere 4x every three weeks, rad start 11/8 33X


Posted By: 123Donna
Date Posted: May 01 2017 at 10:08pm
I'm so sorry - sending you a big cyber hug.  

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: SusaninVA
Date Posted: May 02 2017 at 12:40pm
RyB, after reading about your Mom's story, I want to cry. Everything looked so promising - but it sounds like there is still hope. Please hold on to that. Sending you and your Mom a big hug from Virginia! Please keep in touch.


Posted By: gordon15
Date Posted: May 02 2017 at 8:12pm
I'm so sorry to hear of this setback. Oncologists are working to find agents to treat lung cancer mets originating from breast cancer, I wish I had a suggestion, please know we are thinking of your Mom and all your family.


-------------
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017


Posted By: RyB1984
Date Posted: May 24 2017 at 7:08pm
Hello Everyone!

I hope everyone is doing well.
It's been an interesting time since I last posted. Many many emotions running through this family right now.

I wanted to give you all an update.
So Mom had a full body scan to see if the cancer has spread anywhere and to our amazement......the cancer is only fluid around the right lung and no cancer in any other part of the body. (THANK...GOD!!!!)
Her Cancer Antigen 27.29 was 30, which I guess the normal rate is between 0-38 or 0-42. Oncologist said this is very normal.
Her port was placed back in and she has started chemo.
The oncologist recommended we go to the Dana Farber Cancer Institute in Boston and we met with Dr. Wendy Chen....what. a. sweetheart. She's highly recommended and one of the top in the US.
So this was indeed an EARLY reoccurrence of the original breast cancer (it moved).....Dr. Chen said that she is not eligible at this time for any clinical trials as it's TOO EARLY as there is no measurable size of disease in the body.
The timeframe between the diagnosis and treatment was quite painful. I cried almost everyday and I even cried after I asked for a hug on Mother's day (the night before treatment, who does that SMH) as I told her, "I have been forced to think about continuing my life without her. I told her I cant lose her or I'm going to be a wreck."
She said she will fight and will beat this for me, my brother, my sister-in-law and her grandchildren. Wiped away the snots and tears (lol) and Strength came roaring back and I've been better since.

The recommendation right now is that she will start Carboplatin (she had one infusion already). Both Dr. Chen and our current oncologist are working together and we feel good that we have both the RI Cancer Center and Dana Farber aligned with us. Dr. Chen said there is every reason in the world to believe there is strong hope for my mom. She said she is not dying (she was very blunt, honest and told it like it is)

I think what we are most grateful for is that it's no where else in the body. She's had too taps of the thorentesis (every 2 weeks). This past Monday marked 2 weeks since she had the extracting of fluid and she is starting to believe she may not need another one. Shes starting to sleep a little better, Her shortness of breath has improved, and she goes walking. She recovers a lot faster since she has started treatment. Tomorrow, they are doing a Chest xray to see how the fluid is doing and if another thorentesis needs to be done (she would prefer not to, but if it has to be done, it has to be done, not a good or bad thing as long as it dries.) Oncologist believes the chemo is working.

I am not questioning the oncologist because she TRULY CARES and wants to help my mother. She has told to my mom's face, "I Love you"....she's excellent and truthful, however, I am willing to do ANYTHING in this world to keep my mother on this earth. If there are any other recommendations anyone has, please feel free to let me know. I am asking for you all for prayers and send positive vibes. We are ahead of the game at this time, but I want my mother CURED just like I want every person who is suffering from this horrible horrible disease to be CURED! And according to an article I read recently, they are SO CLOSE to curing SPECIFICALLY TRIPLE NEGATIVE BREAST CANCER!





Posted By: gordon15
Date Posted: May 24 2017 at 8:19pm
RyB1984: thanks for the update! Emotions run high here too

That is really good news that it's only a lung problem !

We hope the Carboplatin continues to help! Please don't dwell on the time-frame from dx to therapy, this is , from what we have been through, always longer than what we expected....I agree, the loss of one in the family closest is impossible to comprehend, ...

the oncologist is basically, the key to life, is the way I see it. They aren't God, but they are trying to their best on behalf of God.

We are thinking of your Mom, you, and your family tonight.


-------------
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017


Posted By: RyB1984
Date Posted: May 24 2017 at 8:43pm
Thank you Gordon!

its starting to feel comforting that at least shes being treated now. I am trying my best to move on from that time frame but my mother...man....shes focused on beating this.
We are thankful it's not IN the lung, its on the outside of the right lung and its only fluid. I am praying this Carboplatin works...never heard of it though.

and I agree with you, the oncologist is trying on the behalf of god.
Thank you SOOOOO much! it sincerely means a lot.


Posted By: gordon15
Date Posted: May 24 2017 at 8:50pm
We are thinking of your Mom and you, it may take a week to see results, keep us posted, ok?


-------------
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017


Posted By: RyB1984
Date Posted: May 24 2017 at 8:51pm
absolutely. I will keep you all in the loop. Thank you, thank you!


Posted By: gordon15
Date Posted: May 24 2017 at 8:59pm
My wife's oncologist is Dr. James Sinclair, he has a partner who specializes in ALL cancer, whereas Sinclair is just breast cancer. He has talked about mets to lung. He's on top of all the latest. He recommended my wife to UCSD/Moores, where she is seeing a doctor , if there is anything I can ask them, just tell me. Sinclair said, just as an example, Keytruda was very effective for melanoma, but he was disappointed in the trials for breast cancer to the lungs. I try to keep up on "eventualities" that might happen, I'm glad to hear you have some good doctors doing the best they can.


-------------
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017


Posted By: RyB1984
Date Posted: May 24 2017 at 9:27pm
could you please ask.....i'm trying not to question what the oncologist is doing cuz she knows what shes doing and consults on the tumor board every week but... I have seen a lot of Combo treatments with Carboplatin. Is Carboplatin an effective chemo or should we consider something with it as a combo? Taxol is not an option as it did something to her lungs last year and it was easily recoverable. what kind of other options could we look at?


Posted By: gordon15
Date Posted: May 24 2017 at 9:51pm
Dana Farber is one of the best. It's my opinion, it's best for you to believe in your Mom's doctors right now, and give their recommendations a chance.

 We can compare notes later, if needed, my wife had a PET/CT about 2 weeks ago, she has a few spots they are watching, she has some lung lesions but they are benign (they are called "ground glass nodules") Since she hasn't had lung issues, other than shortness of breath from radiation to top-outer lobe, when they had to do radiation in her clavicle area, because there are lymph nodes there, that has subsided.

Next time I go in I will ask about any new lung therapies, in the meantime, let us know how your Mom is responding.







-------------
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017


Posted By: SusaninVA
Date Posted: May 24 2017 at 10:39pm
Hi RyB, Thanks so much for letting us know about your Mom.  This news does give a lot of hope that the chemo can eradicate those cells.  You are such a sweet and vigilant son, and I know your Mom must be so thankful for you!  I'm sorry she has to go through so much, but I am thankful to hear that the oncologist sounds optimistic.  I will keep your Mom and you and your family in prayer.  Sending my love and best wishes!  


Posted By: RyB1984
Date Posted: Jun 17 2017 at 8:06pm
Good Evening everyone!

So I wanted to keep you all updated on things that are going on.
Mom has completed 2 treatments and a new update is that she has had a catheter placed in to help with drainage (this Monday will be 2 weeks since it has been placed in).
Momma dukes is in pain often due to the catheter and the fact that the lung feels sore. Nausea is a problem for sure. There has been some slight weight loss but nothing CRAZY. It's like a roller coaster but she does eat!
We have a visiting nurse that comes every other day. The typical amount that would be extracted was 1000ccs (I believe that would equal 1 liter)
Just last week (last Thursday to be exact), 900ccs was drained,
Last Saturday was almost 800ccs
This past Monday was 400ccs.
This past Wednesday was 400ccs again.
So they lowered the amount that would be extracted instead of 1000ccs, it would be 500ccs. The visiting nurse even went as far as saying ill come every 3 days.
Today, the visiting nurse extracted....drum roll......150ccs!!!
Even the nurse was saying something is clearly working.

Something is working everyone. This Carboplatin seems to be working.
She has done some walking at the track and at times even runs during her walking just to keep the blood flowing etc and get that oxygen in. Oxygen levels never go below 97%.

I'm not sure what or why this Carboplatin(platinum chemotherapy) is different than the standard chemotherapies but this sure is working.
I feel like some time soon, this catheter may really be coming out (Prayers up!)
There was talk of possible chemo for long term which was disturbing to hear but I do know God has the final rule on that one. I am hoping at some point we will hear NED again and she will have no meds and can live freely again....I'M HOPING!!!!!
Prayers prayers!!!!



Posted By: RyB1984
Date Posted: Jun 17 2017 at 8:12pm
Also to add, her blood work is ALL going back to normal, which was crazy to see. All her blood levels, liver, magnesium, WBC, RBC, platelets, glucose EVERYTHING....is all going back to normal. there were a few blood tests in the past when we first got the DX back in may of the reoccurrence, a few levels were low and the a few things were high.
once again, everything is all going back to the normal range again which makes me scratch my head. Not saying I am not thankful and thanking god that the doctors are keeping a close eye on her and making sure she's good, but I'm hoping this is another signal that we are going in the right direction.


Posted By: snugltz
Date Posted: Jun 18 2017 at 12:38am

RyB

I will be praying for you and your mom.  So happy for the progress.


-------------
1 cm, 0/2 neg nodes, lumpectomy 6/16/10, cytoxin/taxotere 4x every three weeks, rad start 11/8 33X


Posted By: gordon15
Date Posted: Jun 19 2017 at 4:50pm
RyB: thanks for the update on your Mom, we are fighting this with you.


-------------
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017


Posted By: RyB1984
Date Posted: Jul 16 2017 at 5:45pm
Hello everyone!

Just doing my check in however I am always visiting the forum on a daily basis.
I still pray...EVERYDAY for you all and your battles that you come out STRONG and VICTORIOUS.

I just wanted to give you all an update on Mom's progress as she continues with Chemo (Carboplatin).
She has completed 3 treatments and this journey has been quite a rollercoaster. The fluid on the right lung has now decreased from 150CC's to 25ccs.........25CC'S everyone. That is excellent.
There is now strong talk of having the catheter taken out.
Almost 2 weeks ago, it felt like we had a setback. At the doctor's after having the fluid drained, my mother was still saying she had shortness of breath. Well.....this fluid decided to fill up on THE LEFT side.
Definitely was taken aback on that one. They drained 1000cc's on the left and has since NOT filled back up.

So on that note, a Cat scan, chest x-ray or pet scan (im getting them all mixed up lol) was taken and her body scan was just days later.
Long story short, both body and ALL other scans showed nothing suspicious or anything of cancer. All negative and normal. There was a lymph node that was slightly enlarged that has since shrunk some since. The doctor said this happened last year and then the lymph node went back to normal. Still, she confirmed it......we have no measurable size of disease in her body. P R A I S E god...This carboplatin is CLEARLY working one way or the other!!!!!!!

The only problem is that that 1000cc's fluid that was found on the left side of the pleural and was SUPPOSED to be sent off to be tested...well.... this past wed, the oncologist(according to my mom), came into the appointment MAD and HOT as hell because someone dropped the ball and the fluid was never tested and was disposed. Oh...no...the oncologist is/was so upset as this was an indicator on how this chemo is working on my mother. I believe there may be some talk now about her continuing with the Carboplatin but possibly doing a trial with Immunotherapy at Dana Farber now.

As of now, there seems to be some suspect of maybe something going on with her heart (possibly some kind of heart disfunction), possibly due to the AC from last year. She still has some shortness of breath. We have a visiting nurse that comes and the doctor checks her lungs and according to them, mom's lungs sound clear! (FINALLY) Since this has started, a company who delivers home oxygen has brought oxygen tanks to the house and momma dukes does oxygen every other day-every 2 days (really she is only required to use it when she needs it) as obviously this helps keeps the organs working correctly. I will say this home oxygen gives me personally, deja vu, as my father had to do the same thing but he had to have it on at all times and unfortunately, the ending result was that he died the day after Xmas, in 2005. Completely different situation but it's at times emotional.

Hopefully, we can tackle if there is a heart issue and why there is still shortness of breath as mom is ready to return to tennis and be very active again.

There's the update people.


Posted By: RyB1984
Date Posted: Jul 16 2017 at 6:35pm
Also want to add that they also did a scan of the brain as she was complaining of some headaches/migraine for a short while and that came out NEGATIVE as well too.


Posted By: 123Donna
Date Posted: Jul 16 2017 at 7:58pm
Your mother's response is extremely encouraging!  Best to her and your family.

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: gordon15
Date Posted: Jul 18 2017 at 5:25pm
Great to hear from you! Oxygen , to me, is a good idea, that boosts energy for your Mom and I don't know if Carboplatin works all the time, but my wife was given Carboplatin-Gemzar chemotherapy, and she is stable today, hope the same progress for you Mom!


-------------
wife: IDC/Lobular Stage2B 2008 lumpectomy/TAC+rads
TNBC Stage 3A/w/metaplastic/squamous Nov2015 Carboplatin-Gemzar chemo/masectomy Taxolchemo+rads 4-16
PET scan stable 9-2016/ 1-2017


Posted By: SusaninVA
Date Posted: Jul 23 2017 at 5:15pm
Hi RyB,
So good to hear from you again.  I think all the way around, you had wonderful news to report!  I hope your Mom will gradually regain her strength and resume her tennis play in the near future.  It sounds like her doctors are keeping a close eye on her, and I'm so thankful to read that her scans came out clear.  I'm also glad to hear that you are keeping a close eye on her - you are a wonderful son! 


Posted By: RyB1984
Date Posted: Jul 23 2017 at 7:05pm
So as we have taken steps forward...of course, we take a step backwards.

Long story short, my mother had not been feeling well this week and on Friday, I brought her to the cancer center to be checked out. The doctor just didnt feel confident about letting her go home and momma dukes was admitted.
I had been suspecting that maybe she caught a cold, collapsed lung, possibly pneumonia....etc. Blood work was "good" but something was going on.
After tests, chest x ray and a cat scan....im just gonna thank you lord that its not somethint exceptionally bad, but Pneumonia is not fun. Yup, somehow my mom has pneumonia. Friday night before i left the hospital, she was running a fever. I knew something wasnt right while her oxygen levels never went lower than 95%.

Well, she began antibiotics yesterday and her fever broke last night as she was sweating.
Since then, all her blood work is going back to normal however the heaviness and shortness of breath is still there, but baby steps seems to be improving now as shes coughing it up.

Ughhh lol. They are going to keep her a few more days but i am at peace and relieved they made her stay at the hospital. Im just thankful shes being looked after and this week we start the next treatment plan (100% confirmed).

Thank you to all for the positive vibes n replies. Ill keep u all posted as usual. 😎😁 thank you susaninva for the kind words.



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