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Newly Diagnosed Support

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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=4924
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Topic: Newly Diagnosed Support
Posted By: Admin
Subject: Newly Diagnosed Support
Date Posted: Oct 07 2009 at 1:52pm
Please use this thread for Newly Diagnosed Support



Replies:
Posted By: TexasGal
Date Posted: Oct 07 2009 at 6:02pm
Welcome to all newly diagnosed.  I am sorry to know that you had to join this site, but want you to know you will be surrounded by many of us with the same diagnosis that you can reach out to for support. 


Posted By: Debbi
Date Posted: Oct 10 2009 at 8:48am
I guess I'm in this club...I was diagnosed a little more than a month ago.  I'll begin neo-adjuvant chemo on Tuesday beginning with Taxotere plus Avistan (I'm in the B 40 clinical trial)
What should I expect from my first chemo experience?  My husband will be with me and he and I have been doing a lot of research. 
Do you veterans have any helpful advice, hints, warnings? 
What foods have you found to be beneficial the day before chemo and throughout your treatment?


-------------
DX TNBC 9/09; Stage III,Gr 3.
4 rds Taxotere/Avastin.
2 rds A/C/Avastin.
Bi mx 4/10, 4/7 pos nodes.
33 rads.3 more Avastin.
5/11- 4 excisional biopsies,NEG! MX revis
6/16 Mets to bones and pleura


Posted By: Sunris
Date Posted: Oct 10 2009 at 12:41pm
Hi Debbi,

I am sorry that you had to become a part of our "sisterhood", but feel you came to a great place to find much informative info regarding TNBC.

There are many women ( & men) who spend much time researching and are able to provide us with new insight that some of us aren't able to do due to time constraints. These people are greatly appreciated.

We are all here to support you, Debbi... please feel free to ask any questions on the forum threads.





-------------
Dawn

Age 43 at DX

DX 3-09 IDC 3.9cm

TN-Stage2-Grade3

Taxolx9, FACx2, halted TX,

Lump.8-25-09..rads x 8wks.



Posted By: kmartin
Date Posted: Oct 10 2009 at 2:47pm
Hi Debbi,
 
And welcome to this wonderful site.
 
Sounds like you have a good support in your husband...make sure to accept all offerings of help during this trying time.
 
I had three drugs concurrently, TAC, so I can't speak to the side effects of taxotere alone....
 
But generally, I found that soft foods, peaches, soups, scrambled eggs, tasted the best and were easy on the mouth. I also had a thing for breads...they tasted so good and were filling.
 
Look in the Resources section of this site for many useful tips.
 
Make sure to drink plenty of water and other fluids, take Colace or some other stool softener to prevent consipation and take Emend or other similar drug to prevent nausea.
 
Good luck and keep your questions coming,
 
Kathy


-------------
Found Lump, 2/8/08
Bx IDC, Stage 2, Grade 3, TN
Lumpectomy, axillary node dissection 3/11/08
4/33 positive nodes
TAC x 4, AC x 1
RT x 33-finished 10/14/08
BRCA 1 & 2 Negative


Posted By: Nancy
Date Posted: Oct 10 2009 at 3:20pm
Debbi,
 
I looked back in my outgoing private messenger, and I don't think you ever emailed me so that I could give you the directions for retrieving all the resources from here on the site. I did send you a private message when you joined but cannot remember emailing you.
 
Forgive me if you did not get the info.Unhappy There are many women joining every day.
 
So...drink plenty of water...at least 3 liters every day beginning the day before chemo and every day after. You must get the chemicals out of you system pronto!! Chemo drugs can damage your liver. In the chemo tips the women have said to "carb starve" the day before chemo and "carb load" the day of chemo, as soon as they start the infusion.  Apparently the cancer cells love glucose, and will then gobble up the chemo also.
 
The chemo will probably not affect you that day, but Lori found that it was about 36 hours later that she started to feel the effects, and then she was down for the count for a few days. It is helpful if you can sleep in a recliner for at least 5 days after chemo. Lori did not know about this the first chemo and had horrible headaches for days. Something about lying flat? This does not happen to eveyone, and everyone reacts differently to chemo. She was off work on the Friday afternoons for chemo, and then the following Monday and Tuesday. She just slept most of those days.
 
Eat whatever you can, and you must eat! Lori craved red meat, which by the way is not a favorite of hers, but her RBC's were great all through everyone of her 6 treatments. Her WBC's never dropped very low either. Lori found that she wanted the "comfort foods" of her childhood, so that is what she ateWink 
 
Did you get all the prescriptions for all the meds that you will be taking? Make sure they give you the Emend for nausea, as most say that is the "golden med", and also will you be getting either the Neulasta or Neupogen shot the day after chemo? Lori administered the Neulasta to herself, as she is a nurse. Many women who are not nurses administered the shot to themselvs also, and then they did not have to return to their clinic or hospital the next day.
 
Take everyone of your meds at the scheduled time...every time!! Lori's husband was her cancer secretary and he made certain that she had all her meds on time.
 
Ok..now I will send you a pm with my email address.
Hugs,
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: maryjahn
Date Posted: Oct 11 2009 at 7:51am
I was diagnosed 3 weeks ago and found out I also need another biopsy and an MRI before I can start treatment.  I am very scared, have never been sick before and am new to this discussion forum.


Posted By: Donna Zukowski
Date Posted: Oct 11 2009 at 3:02pm
Hi Maryjahn

I am glad you have found this site. It is hard to believe right now but the time of diagnosis and waiting for treatment can the most stressful and difficult. Some of us have to get something to help us sleep to get through this period. I know I did. I hope your biopsy and your MRI gets done as quickly as possible. Getting on a treatment plan really helps and if you need to get a second opinion take the time to do that. If you have questions do not hesitate to post them here. There are many experts who have travelled a similar journey and they will get you articles and answer questions.

Take care and use this site for support. Ask any and everything or just share what is going on.

Donna


-------------
Donna, TNBC Dx Mar09,stage 2a,1.7cm 1 pos out of 29, taxolX12,FACX4,segmental mastec&axilla node dissection sept 10/09,Rads start Oct,live in Canada,Tx MDAnderson


Posted By: maryjahn
Date Posted: Oct 11 2009 at 6:55pm
I don't think that I have many options:  2 tumors, maybe three.  One under the nipple.  It's either chemo, possibly radiation, then surgery.  They want to do a skin saving mastectomy.  I may or may not lose my nipple--depends on how I respond to chemo.

Looking into Avastin & PARP inhibitor clinical trials.  Won't know until test are done.


Posted By: Donna Zukowski
Date Posted: Oct 12 2009 at 5:15am
Maryjahn, chemo can be really effective for triple negative. If they do chemo before surgery you and oncology will be able to know how it is responding. Some chemos seem to be better and it also seems to be an individual thing. Draw in whatever supports you have. Once you know what your treatment is there will likely be women on this site who have had the same or similar. They can share what it was like for them and most importantly share tips and resources. There is a forum here that has resources. Do you have a date for your biopsy and MRI? Focus on fighting this. My brother sent me an email the day I got diagnosed that my sole job was to fight this. I thought those were good words even though I had many other things to do in addition to this fight; it really was what became most important for the time being.
Donna


-------------
Donna, TNBC Dx Mar09,stage 2a,1.7cm 1 pos out of 29, taxolX12,FACX4,segmental mastec&axilla node dissection sept 10/09,Rads start Oct,live in Canada,Tx MDAnderson


Posted By: trip2
Date Posted: Oct 14 2009 at 7:23am
Hello Debbi,
 
How are you doing with you feeling after your first treatment?
 
http://www.chemocare.com - http://www.chemocare.com   is a website that will tell you alot about the types of chemotherapy you are taking for treatment.  Type in Taxotere, etc., in the search box.  Also it will explain why to expect.
 
Many of us have our experiences and the all vary from not so bad to a rough time.  Remember as you read we are all different and respond differently.
 
One step at a time.
 
Also take advantage of our News/Resource section which is full of info regarding the basics of TNBC, treatments, different chemotherpies, trials, articles, studies, all from reliable websites.
 
Keep us postedSmile


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: trip2
Date Posted: Oct 14 2009 at 8:27am
Hi Marjahn and welcome.Smile
 
Here are some links to get you started,
 
http://cme.medscape.com/viewarticle/584536 - http://cme.medscape.com/viewarticle/584536
 
http://www.hopkinskimmelcancercenter.org/index.cfm/cID/1684/mpage/item.cfm/itemID/1016 - http://www.hopkinskimmelcancercenter.org/index.cfm/cID/1684/mpage/item.cfm/itemID/1016
 
http://www.tnbcfoundation.org/LBBCtriplenegative08.pdf - http://www.tnbcfoundation.org/LBBCtriplenegative08.pdf
 
Be sure in your research that you obtain information from reliable resources backed up by studies, clinical trials, etc.,
 
Please go thru our News/Resource section as there is much information about TNBC, regarding treatment studies, trials, basic information on TNBC such as I have given you above and many things to read which of course you can do over time.
 
Being diagnosed is very scary and we all understand.  Many of us have taken a mild sedative such as Xanax during this difficult time and a sleeping aid doesn't hurt either.
 
Try one day at a time, it is hard and we will support you all the way.  Please feel free to ask any questions and check out the different forum sections that may apply to what you are asking,
best wishes,


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: maryjahn
Date Posted: Oct 14 2009 at 10:55am
Thank you!  This was so helpful.  My doctor wants me to see a doctor who can determin which chemo I will best respond to if any.


Posted By: maryjahn
Date Posted: Oct 16 2009 at 6:21am

I am newly diagnosed too.  You will find additional support on this site in the alternative treatment discussion groups.  The best diet source is a book: Anti Cancer a new way of life.

Very important to strengthen the body before, during and after treatment.

 



Posted By: tkue
Date Posted: Oct 16 2009 at 9:22am
Hi Mary: I understand exactly how you feel. I was diagnosed with Stage 1 breast cancer on September 11, 2009. I have had surgery, am NODE NEGATIVE and am looking into treatment options. I can't start any chemo until after next week Thursday anyway but will be getting a second opinion to make sure what they are saying here is the best thing for me.
 
I am also TRIPLE NEGATIVE. I understand that you are scared and nervous. Do you have someone where you live that you can go to for support or just to talk to?
 
If not you can contact me through this site. This is a good site for us, and I will be happy to listen and do anything I can to ease your fears. The biggeset thing that I am struggling with right now is the hair loss as I will have to have Chemo. I know I can get a wig and my hair will grow back. I haven't started treatments yet but that will be the end of October here.
 
Take care and breath deep. Especially if you have just been diagnosed you're very emotional and that is okay this is your body that this is happening to and NO ONE out there can tell you how you are to feel or react.
 
I can remember when I first met with the Oncologist, I was angry and cried. At least my husband was able to be there with me.
 
Tina


Posted By: maryjahn
Date Posted: Oct 16 2009 at 10:15pm
Thank you Tina for your input and support.  My husband has been wonderful although he is still in a bit of denial.  I'm more of a realist and I am trying to up my odds in anyway that I can.
 
You are almost a month ahead of me--I found out around Sept. 18th and I am still having tests done.  I probable won't start any treatment or have any surgery unit mid or late November.
 
Thanks again,
MaRY


Posted By: Debbi
Date Posted: Oct 18 2009 at 10:47am
Today is the 5th day after my first treatment (Taxotere plus Avastin every 21 days)and the 4th day after I gave myself the neulasta shot. I've had a lot of side effects, but so far have found them to be manageable.  I've walked 3 miles each day and even had a short road bike ride one day.
 
Fatigue- resting a lot
Sore mouth- baking soda rinse (Tomorrow I'll get Magic Mouthwash)
Indigestion- Pepcid AC twice a day (Is it okay if I take more even though the bottle says not to?)
Lack of appetite (This is a new experience for me - I LOVE to eat ! I'm eating nutrition and calorie dense foods at meal times even though I'm not so hungry)
Metal/salty taste in my mouth.  Drinking LOTS of water and hot water with slices of fresh ginger.
Constipation -Bran with prune juice to start the day plus Senekot
Achy body -Continuing to exercise
Headache, mostly at night -Taking Advil and sleeping half sitting up propped up by pillows.
NO NAUSEA OR VOMITING...YAY!!!
A couple of questions....
  • Does anyone have other suggestions about managing side effects, especially the indigestion and headache.
  •  Is there a window when I'll feel like my normal self before the next chemo?
  • What do you recommend for face wash and face lotion.  My face feels tingly and itchy.

Thank you for your input, dear fellow travelers.

Love
Debbi
 


-------------
DX TNBC 9/09; Stage III,Gr 3.
4 rds Taxotere/Avastin.
2 rds A/C/Avastin.
Bi mx 4/10, 4/7 pos nodes.
33 rads.3 more Avastin.
5/11- 4 excisional biopsies,NEG! MX revis
6/16 Mets to bones and pleura


Posted By: cg---
Date Posted: Oct 18 2009 at 11:02am
Dear Debbi,
 
Apparently, taking Claritin for a few days before the Neulasta shot and a few days after seems to diminish the side effects from the Neulasta shot.  Women have been recommended this by their oncologist and it seems to work for them. 
 
If you get a Magic mouthwash formula (depending on the doctor) you may find a few answers to your problems.. Below is a list of some of the ingredients different 'concoctions' of Magic mouthwash are made up with.
  • /wiki/Diphenhydramine - Diphenhydramine - an /wiki/Antihistamine - antihistamine to reduce inflammation
  • /wiki/Glucocorticoid - Glucocorticoids - to reduce inflammation
  • /wiki/Lidocaine - Lidocaine - a /wiki/Local_anesthetic - local anesthetic to relieve pain
  • /wiki/Maalox - Maalox - an /wiki/Antacid - antacid formulation which acts as a coating agent
  • /wiki/Nystatin - Nystatin - an /wiki/Antifungal - antifungal for /wiki/Candidiasis - candidiasis
  • /wiki/Sucralfate - Sucralfate - a coating agent
  • /wiki/Tetracycline - Tetracycline - an /wiki/Antibiotic - antibiotic
  • /wiki/Erythromycin - Erythromycin - an /wiki/Antibiotic - antibiotic
  • /wiki/Acetaminophen - Acetaminophen - for pain


Treat your skin very gently...it is very sensitive and I noted mine seemed very thin.  I used Dove unscented white soap and that seemed to take care of the dried out tight skin feeling.  One other thing to do for yourself is to keep very hydrated, lots of water which helps the skin.  I slept half-sitting up also because my head also hurt.  Be careful with the Advil that you take them with some food because they can be hard on an already irritated stomach.

Love,
Connie


Posted By: Juliadsmith
Date Posted: Oct 18 2009 at 7:45pm
Hello ladies.  I am not newly diagnosed but it hit me tonight that I havent been reaching out to those that are.  I use to be on the bc website all the time reaching out to anyone that needed support.  I found this website and was so excited that they started a tnbc group.  I was diagnosed with tnbc back in November of 2006.  And am still NED!  I went through 6 treatments of Adrimycin, Cytoxin and Taxotere.  Then 48 radiation treatments with 8 boosts.  I just had my 3 month check up and all is still good.  I have a fabulous Oncologist and want to help any way I can.  I live in Katy, Tx so if anyone needs support, I am here!  (Of course on line is good too)! 
I'd be happy to share anything anyone has questions on.  Everyone is a little different but we all share the same fears when we are first diagnosed.  It just plain sucks.  (Sorry, but I cant come up with a better word). 
I can tell you that I truly dont live in fear of recurrence.  I figured I fought it once, I can fight it again.  Knowledge and power fueled me during those difficult times.  Hang on to one really positive thing and stay focused on that.  No matter what it is, if it's important to you, that is all that matters. 
 
Please dont feel like you are up against horrible odds.  Dont listen to the statistics.  You can and will win.  You have to believe it for it to be true!
 
Much love,hugs and strength! You cant fight, you can WIN!
 
Julia
 
 


Posted By: Juliadsmith
Date Posted: Oct 18 2009 at 8:00pm

Hi Debbie,

 
I have a few suggestions that worked for me.  Pepcid actually worked against me.  I started taking Ativan to help calm my nerves and my stomach got much better. 
I didnt feel like myself until 10 days after my last chemo so hang in there.  Each treatment my body reacted differently so just when I thought I had it figured out, it changed on me.  Just listen to your body and talk to your chemo nurse. 
My Onc gave me a special mouthwash for my sores and thrush which helped a great deal.  I can find out what it was, if you'd like.  I started it a few days before chemo and continued for 4 days after. 
My face was the same way.  I washed with a gentle face wash and put non allergenic lotion on.  I also upped my allergy medicine and it helped a great deal. 
 
I was on Ativan, Dacadron, Anzhimet daily.  Even though your only suppose to take it a few days after treatment, I needed every day. 
 
Just dont be shy and ask you Dr and chemo nurse and call them when you are not feeling well.  There's a lot of meds that can help you and you dont have to suffer through it. 
 
Hoe that helped a little.  Let me know if you need anything else!
 
Julia


Posted By: unklezwifeonty
Date Posted: Oct 19 2009 at 4:01am
Hi Julia,
Thank you for the encouraging words.


-------------
Dx: Jul/09. Age: 37. Grade: High. Size: 3cm. BRCA: -ve. Lumpectomy: Aug/09. Micromet 1/9 node. Chemo Start: Sep/09. Kicked from E5103 due to Taxol reaction. Now on AC->Abraxane. Zometa (S0307).


Posted By: Juliadsmith
Date Posted: Oct 19 2009 at 6:39am
Debbie,
 
I just remembered what else I did to help my indigestion.  I ate smaller more frequent meals ( I think I ate something about every hour for the nauseau, which helped too) and never sat down or layed down within 30 minutes of eating.  I took small little slow walks and it helped a lot.  I stayed away from acidic foods and breads.  Your stomach takes a beating with chemo but it does get better and eventually goes away completely.  It took a few months after I ended chemo for it to completely go away, but it did! (I gained about 30 pounds but I really didnt care.  I knew I could deal with the weight after I got through treatment).  Nerves and stress during this difficult time are hard to manage.  Are you taking anything to help with that?  I did not need to go on any anti-depressants but needed Ativan for anxiety.  (which really affects your stomach).  It helped me to calm myself.  I also took 12mg of Ambien in order to get some sleep. 
 
Hope this helps a little.
 
Julia


Posted By: trip2
Date Posted: Oct 19 2009 at 7:29am
Julia, it is so nice to have you aboard and congrats on doing so well.
 
We all will appreciate your support, experience, tips, thank you so much.Smile


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: trip2
Date Posted: Oct 19 2009 at 7:34am
Hello Tina and welcome to our forum.Smile
 
Many of us have found coming here and helping others provides a support not only for the other member but for ourselves.  You are very kind to be willing to help a frightened newly diagnosed member.
 
We'd love to hear an update when you learn more about what your treatments will be and a second opinion is an excellent idea!
 
It is scary to be diagnosed with TNBC so being with others who understand what it is like to have TNBC can be an immense help.


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: AmyC123
Date Posted: Oct 27 2009 at 9:20am
Hello all,  I am a 38 year old mother of 2 diagnosed on October 5, 2009 with IDC stage III.  Had partial Mast. on Oct. 15th and node removal (11/19) When my oncologist first told me I was triple neg. I thought it was a good thing.  I'm just finding out on my own that it's not.  I have a bone scan and CT scan on Nov. 5th, trying to stay positive, but it is getting so hard.  Everyone always says "you're going to be fine and "people don't really die from breast cancer anymore". 
I don't know if I should go back to work.  I think it may help to be around people.  I can't stand being alone. My husband is very supportive, but he has to work.


Posted By: dmwolf
Date Posted: Oct 27 2009 at 9:59am
Hi, Amy.  Welcome to the site, though of course so sorry you have reason to be here.  The beginning is really rough, emotionally, for all of us.  I remember going through exactly what you describe, first feeling relieved to be triple negative (fewer things making the cancer grow, right?), and then little by little grasping that this was far from good news.  I was out of it that I was initially happy about the ER- because I could avoid Tamoxifen and early menopause.  Little did I know that chemo would put me in menopause anyways, and that having no targeted therapy is not what one wants.  As for going back to work, for now until you start chemo, you might as well if it helps you keep your mind off your fears.  You'll have to reassess when chemo starts - some women work through it, but many of us choose to take the time off to take care of ourselves and our families.  Personally, I found that I couldn't really work, be 'mom', do cancer treatment, AND do stuff like daily yoga, meditation, acupuncture.  So cancer treatment and healing arts became my 'job' for about 8 months.  

Good luck whatever you decide, and getting through this first stage of dealing with the diagnosis and deciding on treatment.  (by the way, how old are your kids?  Mine were 7 and 10 when I was diagnosed.)

Love,
Denise


-------------
DX 2/08@43 stg II IDC; gr2,0 nodes. Neoadj chemo, first ACx2 (fail) then CarboTaxotereX6(better). Lump, Rads done 11/08; Clodronate. False alarm queen: PetCT lung & TM marker. NED. PBM w/recon 9/10.


Posted By: trip2
Date Posted: Oct 27 2009 at 10:31am
Hi Amy and welcome,
 
Just being diagnosed is very scary and  you're not sure of what is going to happen.
 
We usually have the scans you mention to make sure it hasn't spread and you will go from there.
 
Do the best you can to not worry about next month or next year.  Try going day by day, hour by hour if you must.
 
I was put on xanax after being diagnosed my first time and it helped alot.
 
Let us know how your scan results come out and ask any questions you might have, we'll try to help.
 
Start going thru the TNBC News/Resource section, there are some good tips and articles, studies.  Knowledge will empower you and help to give you good questions to ask your medical team.
Best wishes


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: Juliadsmith
Date Posted: Oct 27 2009 at 3:07pm
Hi Amy, 
 
Welcome to this wonderful site where you'll find valuable information and lots of love and encouragement.  Waiting is so very tough.  Once I got all my info back and had a game plan, I did start to relax and feel a bit in control.  I did work a very demanding job up until my 4th treatment.
I probably shouldnt have worked past my 3rd but I'm a stubborn woman.  I felt like I needed to be productive and maintain my staff and clients.  It drove me bonkers to stay at home but my family started flying in from all over the country to be with me and that was my saving grace.  (I have 6 siblings)  I'm also a mother of 3 beautiful children.  2 girls, 17 and 13 and one boy 14. 
I went back to work a little too soon though.  I ended my treatment and went back to work within 3 weeks.  (Did radiation in the mornings then headed to the office). 
I did find that the more knowledge I had, the better I felt.  Even when the news was not as good as I would hope for.  I really stayed away from listening to statistics.  I did 6 rounds of aggressive chemo, 48 rads with 8 boosts.  I figured I did everything I could. 
 
Once you get the game plan, you will feel better.  Everyone is different so do what's best for you.
Right now, that is what is the most important!
 
Dont forget to ask for help.  From this site, your Dr and nurses.  Be your own advocate!
 
Julia
 


Posted By: maryjahn
Date Posted: Oct 27 2009 at 11:26pm
Hi Amy,
 
I was diagnosed mid September and just had my MRI, bone scan and CT scan.  I should know in a couple of days what my treatment course will be.  I chose to not work because I seem to be working full time doing other things to keep me healthy.  I am at the dr's at least 3 x per week including nutritional support by my integrative dr.  I am doing to need a mastectomy on at least 1 breast.  I wouldn't rush into anything--use this support site to explore all of your options, as you have many.
 
Many warm wishes your way--stay positive and you will survive this.
 
Mary


Posted By: AmyC123
Date Posted: Oct 28 2009 at 8:31am
Thank you ladies for all of your kind words and encouragement. :)  Yesterday was  a bad day.  I know i will have them.  I feel a little more positive today.  I figure it won't do any good to worry about dying, it won't make me live any longer.  I have to go back to work for my insurance.  I wish I didn't.  My kids are 13 yr old daughter and 19 year old son. :)


Posted By: Lillie
Date Posted: Oct 28 2009 at 4:59pm
Hi AmyC123,

Sorry about your diagnosis. I pray that your scans are clear and you can set a course for treatment.

You said you have to work to keep your insurance. Do you have any short term disability benefits? If so, have you looked into how much and how it works? The reason I ask is because I did have short term disability and long term disability through my employer. I did not work during my treatments but was required to go back to work after my Dr. said I was able. This was to be able to keep my insurance active after being on disability. My job was very stressful and my oncologist recommended that I take that break during my treatments.

I hope you can work things out, even if it working part time or something that you can handle and not jeopardize your health.

Much love and best wishes,

Lillie

-------------
Dx 6/06 age 65,IDC-TNBC
Stage IIb,Gr3,2cm,BRCA-
6/06 L/Mast/w/SNB,1of3 Nodes+
6/06 Axl. 9 nodes-
8/8 thru 11/15 Chemo (Clin-Trial) DD A/Cx4 -- DD taxol+gemzar x4
No Rads.
No RECON - 11/2015-9 yrs NED


Posted By: kmartin
Date Posted: Oct 28 2009 at 7:16pm
Hi Amy,
 
I had to reach out to my friends and family members during my treatment...my best friend came over every day. I needed that in order to get through the bad and to enjoy the good.
 
My advice is to try to reach out for support and accept it as it flows toward you...a very difficult step for me. I was always the giver. Receiving was hard at first, but I learned to graciously accept the meals and offers of help.
 
Good Luck with your journey, we are here for you,
 
Kathy


-------------
Found Lump, 2/8/08
Bx IDC, Stage 2, Grade 3, TN
Lumpectomy, axillary node dissection 3/11/08
4/33 positive nodes
TAC x 4, AC x 1
RT x 33-finished 10/14/08
BRCA 1 & 2 Negative


Posted By: lrderedita
Date Posted: Oct 29 2009 at 10:02am
Hi Debbie,
I always get confused about taxotere, taxol and what I am now taking Abraxane (taxol's cousin). But I had taxol in 2006 (after AC) and had lots of aches,leg weakness, nausea and neuropathy, which all went away after completing it.
Now taking the Abraxane and Avastin, I haven't had any of that. I'm completing my second cyle today, of three weeks on and one off. I am weary, tired and rest a lot for a couple of days but no nausea and no aches. I receive Kytril with the drugs. My hair is steadily thinning, but not where I feel it necessary to go bald yet. I have short hair, anyway. And the best news is that the swollen lymphnodes (supraclavicular area) are greatly diminished. I used to feel the "small grape" cluster and now nothing. Praise God. We'll do scans after the third cycle.
I have had to discipline myself to stay away from spicy, tomato dishes only because I seem to be sensitive to canker sores. Otherwise, just being sure to eat healthy regularly. Don't let yourself get hungry.
All the best to you and your husband. It's bearable      Lynne

-------------
Age 46-5/06 lump ACT, Rads; 5/08 Rec bi-mast,Etopiside/ Cisplatin; 11/08 Rec Rads/ Gemzar(rad dose); 7/09 supraclav nodes Avastin/ Abraxane Sept09-current
Joyful in Christ through all circumstances!


Posted By: LaurieB
Date Posted: Oct 29 2009 at 12:34pm
Hi Debbi,
 
I was diagnosed 10/5/09.  I am also going to be doing the B-40 trial, if my HMO doesn't stand in the way.  I don't know when I start the treatment yet, I go back to see the onc for appt #2 next Wed.  Do you know what group you are in?  Hope your first tx went as well as possible. 
 
Laurie


-------------
I am healing!


Posted By: pjptexas
Date Posted: Oct 29 2009 at 5:17pm
Hi Tina,
 
I was dx with TNBC stage 1 in April, last treatment was July 09.  Yearly mam-o caught tumor.was really small .9 cm was able to do interal radiation, and only 4 chemo.  But still have the same fear that it might come back.  
 
Most important thing to do is start a log, it's the only way you can keep up with everything that is happening, plus get a copy of all test from your doctor for your records. 
 
What would we do without the support of our husbands, family, and friends.  I thank my  husband daily for all his support.Smile


Posted By: tasoulla
Date Posted: Oct 31 2009 at 4:08pm
Hello,
 
my mum also was newly diagnosed with breast cancer and 7 lymph nodes involved.
how many lymph nodes you have involved?did you had your first chemo and how are you feeling?
what do you include in your diet?
 
hope everything goes well!!
 
tasoulla


Posted By: DonnaL
Date Posted: Nov 04 2009 at 9:16pm
I posted my first message of being newly diagnosed with TNBC on the welcome board and then saw this thread - so, I'll post here.

I was diagnosed with TNBC today, so I've started to do research and found this site.   I do have a couple of lymph nodes involved, but my surgeon sent me for a MRI, PET scan and CT scan last week, which all showed no spread other than the tumor in breast and lymph nodes under the armpit - so that was good news and then I met with my oncologist today and that's when I found out I had TNBC.  He said I would be eligible to participate in the following clinical trial:  Randomized phase II 2x2 factorial trial of the addition of carboplatin and/or bevacizumab to neoadjuvant weekly paclitaxel followed by dose-dense AC in hormone receptor-poor/HER2-negative resectable breast cancer

But, after reading the potential side effects of the different groups (worst case scenarios) I'm not sure what I should do.  

Looking forward to learning more from all of you

Donna


Posted By: LaurieB
Date Posted: Nov 04 2009 at 9:50pm
HI Donna-
 
I also was diagonsed w/ TNBC on 10/5/09.  All of my scans were also clear.  One lymph node looks slightly enlarged on the CT scan.  I am going to take part in a clinical study it is called B-40. I don't think that it is the same as yours, but it also has about 5-6 pages of scary side effects, which my onc told me about when he offered me the study.  He told me it was similar to reading the side of a box on any drug.  I talked to the research nurse and she let me know that most of them are ones that would come with the regular chemo anyway.  They moniter you very closely and have alot of drugs to help with some of the side effects.  I know 2 people who have had a different type of cancer (stage 4 lymphoma), that swear that they are alive today because of the clinical studies that they participated in.  If you trust your doctors, then I would go for it.  My trial is a PHase 3, but sounds like it has some of the same drugs as yours (bevacizumab).  Mine is not a study for TNBC, but for neoadjuvant chemo with some extra drugs (I don't have in front of me right now)  From the research I have done, I feel lucky to have this offered to me, but it is a personal decision.  I gather that sometimes you have to follow your gut feelings.  Did you have the genetic testing done?  I did because of my age (35) even though I have no family history.  I found out yesterday that I do not have the mutation.  I am interested to know what your surgeon has recommend for you.  I have been told that I can have a lumpectomy, but w/ the TNBC I have thought about a bliateral mastectomy.  Since I am doing the chemo first, I have time to decide.  My onc told me that this type of BC is "front loaded" meaning that if there is no recurrence in 5 years, that the chance of one goes way down.  That made me feel better.  Also TNBC actually responds better to chemo than other types of BC.  Anyway, I don't know if I helped with your concerns, have you gotten a second opinion?  Maybe that would help you sort through some things.  My onc is the head of the medical onocology ward at Edwards Hospital in Naperville, IL.  It is a nationally ranked cancer center.  My surgeon is the chairman of the Lynn Sage Comprehensive Cancer Research Foundation, and she also agreed with my participation in the study.  I really trust their opinions.  Keep me posted.


-------------
I am healing!


Posted By: tasoulla
Date Posted: Nov 05 2009 at 8:36am
Dear Donna,
 
What exactly is the treatment your going to follow? How many times for each cycle and what drugs?
My mother is under the dense dose treatment and i think is the same situation as with you.
How many lymph nodes are affected and what grade is the tumor?
 
 
Regards,
 
Tasoulla


Posted By: DonnaL
Date Posted: Nov 05 2009 at 8:57am
Thanks, Laurie for your response!
 
Hi Tasoulla,
 
If I do the clinical trial there is one of four groups that I could be put in:
 
  • Arm I: Patients receive paclitaxel IV over 60 minutes once weekly in weeks 1-12. Patients then receive dose-dense doxorubicin hydrochloride IV over 5-10 minutes and cyclophosphamide IV over 5-30 minutes (ddAC) once in weeks 13, 15, 17, and 19.

  • Arm II: Patients receive paclitaxel and ddAC as in arm I. Patients also receive bevacizumab IV over 30-90 minutes once in weeks 1, 3, 5, 7, 9, 11, 13, 15, and 17.

  • Arm III: Patients receive paclitaxel and ddAC as in arm I. Patients also receive carboplatin IV over 30 minutes once in weeks 1, 4, 7, and 10.

  • Arm IV: Patients receive paclitaxel and ddAC as in arm I, bevacizumab as in arm II, and carboplatin as in arm III.

Patients in all arms undergo definitive surgery (i.e., modified radical mastectomy or breast-conserving surgery with appropriate management of the axilla) between 4-8 weeks after completion of neoadjuvant therapy.

My tumor grade is 3 and 2 lymph nodes affected.
 


Posted By: Nancy
Date Posted: Nov 05 2009 at 1:19pm
Dear DonnaL,
 
While I cannot answer your questions as to the trial I can welcome you to the site. Clap I will also send you a private message with my email, so that I can forward the directions for accessing all the resources we have here on the site.
 
The amazing women and men on the site will provide you with all the love, compassion and support you will need for this unplanned journey. It is my daughter Lori who was dx in June of 2007 with TNBC, and they helped me help her through that very difficult time.
 
Lori had opinions from 3 oncologists before she made the final decision as to exactly what treatments she would take, and I know that most of the members will encourage you to seek more than one opinion also.
 
So...again welcome!!
Hugs,
Nancy


-------------
Nancy
DD Lori dx TNBC June 13,2007
Lumpectomy due to incorrect dx of a cyst
mastectomy July 6 2007
chemo ACT all 3 every 3 weeks 6 tx Aug-Nov
28 rads ended Jan 2008


Posted By: dawnmarie
Date Posted: Nov 07 2009 at 4:52pm
Hi everyone....I am new to this site. I had a lumpectomy on my left breast on 10/26/09 and just had follow up with surgeon this last Thursday who recommends a double mastectomy. Reason for the double is that I also have a lump in my right breast which seems to be growing rapidly now. All I have at this point is my pathology report that shows I am a triple negative. Doctor recommends no constructive surgery during the mastectomy until we know where I stand. Have any of you ever had a double mastectomy without having to go thru the chemo process?  He said we would have to see if the margins are clear following surgery. I think I am dreading the thought of chemo more then the surgery itself.


Posted By: LaurieB
Date Posted: Nov 07 2009 at 5:14pm
Hi Dawn Marie,
 
HAve you seen an onocologist?  Trip Neg ususally responds better to chemo than other BC.   I was told that (I will be having chemo before my surgery to shrink my tumor) the chemo wil kill any "mircoscopic" cancer cells that might have travelled away from the breast.  All my scans were clear, so ther is no mets, bit I feel good knowing that any little bits that mght have travelled away will be killed w/ the chemo, since Trip Neg has a higher rate of spreading. I have only heard that you don't need radiation with a mastectomy, nothing about not needing chemo.  Did you ever get a 2nd opinion?  I spoke w/ 2 surgeons and 2 oncs, and they all recommended the same course of treatment, so that made me feel more secure.  Keep us posted!!  Laurie


-------------
I am healing!


Posted By: dawnmarie
Date Posted: Nov 07 2009 at 5:28pm

I have not seen oncologist...so far just the surgeon who is recommending the double mastectomy first and then follow up with chemo if necessary. I have Blue Shield HMO and know I have to go thru the process of authorization but so far the surgeon hasn't said anything about that.

I am following up with him this week prior to surgery. what kind of questions should I be asking? I am still in a state of shock with all this, crying, depression over losing my double D breasts ...the thought of returning to work knowing everyone will be looking. What do I need to buy before the surgery to appear normal to go back to work???? doctor said I would be out approx. one week.



Posted By: 123Donna
Date Posted: Nov 07 2009 at 5:29pm
Dawnmarie,

I had a bilateral mastectomy, Stage 1, clear margins with no node involvement (0/5 nodes tested).  Because I had TNBC, my onc told me chemo was the standard course of treatment.  Without chemo, she said I had a 25% chance of recurrence, with chemo about 13%.  With TNBC, there is a greater chance the ER+ types that a stray cell could have escaped throught the lymphatic or vascular system.  Chemo sucks, but it seems the only insurance policy we have since other adjuvant therapies, like tamoxifen, aren't available to us.  Chemo isn't fun, but you can get through it.  There are many on this site that can help you along the way, especially with side effects.  Did they tell you what chemo regimen they are considering?

Donna

PS:  You can post your details in your signature line so that others know what dx, stage, size, tx, etc.  Just go to your profile and edit your "signature".


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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: dawnmarie
Date Posted: Nov 07 2009 at 5:50pm
they haven't discussed the chemo with me yet .... so far just the double mastectomy with possible chemo follow up. all I have at this point is my pathology report on left breast mass that was removed by lumpectomy: size of invasive tumor 1.8 x 1.5 x 1.0 Histologic type: Invasive carcinoma Histologic grade: High grade, ER, PR & HER-2/neu Negative.
the one in my right breast doesn't feel as large but I have decided not to wait and have that looked into because it does seem to be growing. At this point I want it all removed quickly first & foremost. I assume my surgeon will refer me to oncologist following my surgery.


Posted By: 123Donna
Date Posted: Nov 07 2009 at 5:55pm
Dawnmarie,

I didn't have any problems with the insurance company paying for the bilateral.  Most insurance companies will pay for this, especially when they know you're TN.  When your surgeon mentioned you'd be out of work for a week, I'd question that statement.  It was almost 2 weeks before I got all the drain tubes out.  I was able to work from home during my recovery and chemo, but even if I only had the mastectomy, I'd say I would have been out for at least a month (4 to 6 weeks) before returning to work. 

Will you be having tissue expanders with the expansion implants placed in during the surgery?  With these you're breasts will look somewhat normal, but not as large as your normal breasts.  Each saline fill will expand the temporary implants.  If you're not having this done at the time of surgery, you can always purchase a special mastectomy bra where you can place a prophylactic implant inside the bra or camisole.  My husband's aunt had a mastectomy with no reconstruction and she purchased them to place inside her specialty bra.  She's very active and happy with her new look. 

I was never bothered about people staring at me knowing I had a mastectomy.  I was always upfront with them and even joked that I was mad at my breasts since they tried to kill me.

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: dawnmarie
Date Posted: Nov 07 2009 at 6:14pm
lol thanks for that humor about the breasts....
My surgeon advises against reconstruction during the masectomy until we know whether or not I will be needing further treatment. Implants I guess tend to get in the way of things.
He said I will have surgery with drains and stay overnight....he made it sound like the drains would be removed the following day....is that not the case???
I am a single 50 yr old woman and work full time on an hourly basis. I do not have sick time but I do have about 3 weeks vacation time saved up. I'm not the type that likes to stay home when sick as it tends to only make me feel worse..so I am hoping for just that one week downtime.


Posted By: 123Donna
Date Posted: Nov 07 2009 at 6:29pm
Dawnmarie,

My ps placed 3 drain tubes on each side.  I know some women only have 2 on each side.  The end of the drain tube reminded me of little grenades.  I'm sorry, but you have to keep a sense of humor about all of this.   You will need to measure the drainage and record the total each day.  Once it gets below a certain level, the drain tube is removed.  Will you be having someone stay with you when you come home from surgery?  I'd seriously recommend it.  Not only do you have the drain tubes to contend with, but you'll be on pain medicine.  Keep a log or diary of all the medicines you take throughout the day, plus your temperature.  It's very easy when you're on narcotics to forget when you took your last meds.  My DH was very good about checking the drain tubes and "stretching" the tubes several times a day to help the fluid drain.  I don't think I could have done it the first week by myself.  I never had surgery before this (except tonsils out when I was 5) and very squeemish.   When I took a shower we used a lanyard that went around my neck and had all the pins for the tubes attached to the necklace.  It made it easy to keep them out of the way. 


-------------
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: LaurieB
Date Posted: Nov 07 2009 at 6:30pm
Dawnmarie-
 
I have an HMO and most of them want you to get a 2nd opinion, and any good doctor should be more than ok with that.  I would do that before you schedule the next surgery.  Breat surgery is not a medical emergency, you have time to get 2nd opinions and make the decision that feels the best to you.  It will help to put your mind at ease.  You can choose your own onc, and ask your primary care doc to refer you there.  Ask if there are any clinical trials that they have available to you.  YOu can also look that up yourself on many cancer websites.  Take charge of your treatment plan, it will help you feel more in control.  Make sure that you give yourself plenty of time to heal after any procedure.  You need to be a warrior now, Give yourself time to mourn, but keep yourself stong and positive, and be your own advocate.  Let people help you when they offer.  Put yourslef first.  You can get throught this!! 
Laurie


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I am healing!


Posted By: LaurieB
Date Posted: Nov 07 2009 at 6:32pm
Sorry about the typos

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I am healing!


Posted By: dawnmarie
Date Posted: Nov 07 2009 at 7:13pm

At this point I am very anxious and scared as I am watching the lump in my right breast grow. I trust my surgeon at this point and knows he will do whats best for me. I just don't want to waste anymore time with this ticking bomb in me. I am preparing a list to take with me on Thursday of questions to ask.....any input on this would be great.

I don't have anyone staying with me after surgery though I suppose I could but following my lumpectomy I felt better alone.....time to cry if I wanted and time to just sleep if thats what I wanted to do.  Sometimes I just don't want to hear people talk......I enjoy living alone and having that time and then there are times when I want to speak to people about this but they just don't understand and say well its only your breats......but my breast are double D's and a very Big part of me which they don't understand.


Posted By: dawnmarie
Date Posted: Nov 07 2009 at 7:15pm

P.S. my boss was so upset that I got the runaround las time that he himself has called the insurance company and demanded that there would be no further hassles and/or wait time where I was concerned. So my account has been red flagged for all  go aheads



Posted By: LaurieB
Date Posted: Nov 07 2009 at 7:29pm

Dawnmarie,

Do whatever makes you feel best!!  We will always support you.  I am glad that your boss stood up for you with your insurance, that is one more thing that you will not have to worry about!!  I am glad that you have a doctor that you feel good about.  Keep coming here for support.  Also I would recommend you visit the Network of Strength website.  They have a 24 hour help line that you can call anytime and they will match you with someone with a similar dx and situation that has been through what you have been through.  There are lots of great women on that website that have helped me alot in my darkest moments.  Just remember to stay positive.
 
Laurie
 


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I am healing!


Posted By: dawnmarie
Date Posted: Nov 07 2009 at 8:04pm
Thank you Laurie  :) I trully appreciate all your help and words of wisdom...


Posted By: LaurieB
Date Posted: Nov 07 2009 at 8:39pm
Here are some questions posted on the Network of Strength website
http://www.networkofstrength.org/ - http://www.networkofstrength.org/
 
Be sure to identify your needs before communicating them to your doctor and his or her health care team. Below are questions to consider asking yourself before your next appointment.
  • How much information do I want to be told about my diagnosis or health status?

  • How do I want my doctors to communicate with me about these issues (for example, “Don’t beat around the bush” or “With tender loving care”)?

  • Under what conditions do I need to talk with my doctors (quiet, uninterrupted, with a tape recorder or a family member present to capture information)?

  • What is most important when I consider my treatment options (for example, living longer, minimizing side effects, avoiding pain)?

  • Is there anything I can do to make communication with my doctors easier?

The following questions are ones to consider asking your doctor:

  • Why do you recommend this treatment or procedure?

  • How might it help me?

  • What are the possible risks?

  • What are the side effects? Which ones require immediate medical attention?

  • How long does it take? How often do I receive it?  How is it given?

  • Are there more or less aggressive options available?

  • What are the symptoms that usually develop with my type of cancer diagnosis, and how are they treated?

  • How will each of these options affect my quality of life? Will I be able to do the things I enjoy? Can I work? Take care of my kids? Go on vacation?

  • What lifestyle changes would you recommend I consider during my treatment?

  • How and when will the effectiveness of this treatment be evaluated?

  • How do you like to make decisions?

  • How will you present information to me?

  • How can I reach you in an emergency?

  • What happens if I choose to receive no treatment?

Treatment (Oncologist):

  • Will you obtain and review with me the treatment information on my type and stage of cancer from the National Cancer Institute's Physicians Data Query (PDQ) program?
  • How long do I have to make a decision on a course of treatment?
  • What test results did you use to base your treatment recommendation? Are there other tests that can help refine our treatment options?
  • If I consent to this treatment what are the chances of recurrence?
  • Am I a good candidate for any clinical trials?
  • If I feel I need to either reduce the dosage or stop chemotherapy what impact does that have on my recurrence and survival rate?
  • What will the treatments cost me? Does my insurance cover the treatments you recommend?
  • What tests will need to be done while I'm undergoing treatment? How frequently will these tests need to be performed? When will they be done? What are you looking for with each test?
  • After I've completed treatment, can I expect the cancer to be completely gone?
  • How long will each chemotherapy infusion take? Can I drive myself to and from each treatment?
  • What should I wear to chemotherapy treatment? Can someone be with me during the treatment?


Treatment (Surgeon):

  • What kind of surgery will I have? How long does the surgery take? Exactly what will be done and/or removed in the operation?
  • What are my options regarding breast reconstruction? What will it cost me? Will my insurance cover reconstruction?
  • How long will I be in the hospital? Can I drive myself to and from the hospital?
  • Why do you recommend this procedure? What are the chances of success? What is a successful treatment? What are the risks associated with this surgery? Are there non-surgical options?
  • Will I have normal sensation in my breasts after treatment?
  • How long do I have to wait for the surgery results? Who will give them to me? May I have it in writing in addition to verbally? What kind of breast cancer do I have? Has the cancer spread to any lymph nodes or other organs?
  • How long does it take for a full recovery? What is meant by "full recovery"? When can I return to work? What side effects should I expect?
  • What do the terms "clean margins", "lymph node involvement", and "pathology report" mean?
  • What is "lymphedema"? Is there a way to prevent lymphedema?


Treatment (Radiation Oncologist):

  • What is the goal of the radiation treatment you're recommending? Are you working toward reducing the tumor or eradicating it?
  • What should I expect to feel during and after treatment? Are there activities I should avoid either before or after radiation treatments?
  • How long is each treatment? How many treatments will I need? How often will the treatments be given? Can I drive myself to and from treatments?
  • What should I wear to a radiation treatment? Can someone be with me during the treatment?


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I am healing!


Posted By: maryjahn
Date Posted: Nov 08 2009 at 3:30am
California state disability covers you for a year to take time off of work and you would receive 2/3 pay--if you were to lose your insurance because of this you are covered 100% by MediCal--they will also take up the difference of what insurance doesn't pay if you choose to continue to work.  I felt that the stress of my job would interfere with my recovery and opted to go on medical leave.  I had no vacation time, sick pay or insurance though I had a very well established career.

I week is questionable so i would get 2nd & third opinions--California has the best care and hospitals in the nation--you might consider City of Hope or Huntington Hospital (a non profit) in Pasadena and Santa Monica has amazing facilities and I hear Cedars Sinai is also good.  You don't say exactly where you are in S. California, but these are the best and state of the art for breast cancer and well may be worth the drive.  You have options for people driving you to and from your home (there are many free services--ask your dr) but you want to have some home care of a very close friend.  You have to have the tubes drained and if you have chemo you are going to need help!

Best of luck to you--I have my final report on the 12th and I will know the final details of my mastectomy.  It really angers me that people think having your breasts cut off is like getting your hair cut off--it is a body part and I am very fond of mine and I am not looking forward to losing them. 

Maryjahn


Posted By: Carol (Tenn)
Date Posted: Nov 08 2009 at 6:26am
LaurieB,
Welcome to this great place. The questions you posted are wonderful. Maybe you add them to the Resource forum. This would be great for all newly diagnosed. I wish I had them when I started this journey.
I am at a place now that I feel the need to discuss with my surgeon and onc their not sharing with me the diagnosis of TNBC. They told me about er, pr, her neg stuff but didn't give it a name. I found that out by myself.
I am not a confrontational type person and am not looking forward to talking with them. I feel like they will put me on the defensive. I don't want that.
My husband says I look for things to worry about and I guess he's right but I think it was my right not know or anyone's right to know what they are dealing with and to be given all the info so that all the right decisions are theirs no matter what they are.
Tomorrow I am going to attend my b/c support meeting. I live in a small community and I don't think I'm going to find many tnbc patients but I will try. I would love to start a support group for just us. Our dx is so different from the "normal" b/c.
I too, am so tired of people saying that your lucky it's just breast cancer. That can be cured. It's not their fault but someone needs to speak out and let people know that IBC and TNBC is not "just" breast cancer. No cancer is "just" anything. It's all ugly.
I seem to have jumped up on my soap box, so I will step down and hush...LOL
Have a wonderful Lord's day.
Love, Hugs and Prayers,
Carol


-------------
St 2 Gr 3, A/C/T, DD
Radiation x35
Rec chest wall 07/09
Radiation x28
NED 10/24/11
NED 10/5/12
NED 03/15/13


Posted By: trip2
Date Posted: Nov 08 2009 at 5:40pm
Hi DawnMarie and welcome.
 
My daughter was diagnosed over 2 yrs ago and she had a single mastectomy.  Then after her chemo and rads she had the other breast removed and had recon so you can do that part later on.
 
I too would suggest a second opinion.
I personally had a good surgeon both times I was diagnosed but he was so wrong in his knowledge of bc and what I might face for treatment.  A surgeon's focus is surgery.  Once you meet your Oncologist with your pathology in front of them then they can tell you what treatment if any you might need.
 
You can buy post mastectomy bras which are quite nice.  They come with little puffies that you can slide in pockets.  They also have pockets for the drain bulbs which can be a real nuisance.
 
http://www.tlcdirect.org/subcategory/AmericanCancerSocietyPostSurgicalCamisole.html - http://www.tlcdirect.org/subcategory/AmericanCancerSocietyPostSurgicalCamisole.html ?
 
http://www.thepinkbra.com/mastectomy-boutique--post-mastectomy-camisoles.html - http://www.thepinkbra.com/mastectomy-boutique--post-mastectomy-camisoles.html
 
http://www.makemeheal.com/mmh/product/mastectomy/bra/postsurgery/index.vm;jsessionid=ADEADE16B284F6A2407EC94AC4EB22BB?procid=33&catid=429&subcatid=435 - http://www.makemeheal.com/mmh/product/mastectomy/bra/postsurgery/index.vm;jsessionid=ADEADE16B284F6A2407EC94AC4EB22BB?procid=33&catid=429&subcatid=435
 
There are several places if you google for these camisoles.
 
You want to gather up loose fitting tops, big t-shirts, loose button shirts, silky camisoles are nice.  Your chest will be touchy so you won't want tight clothing for awhile plus you will the bulbs to deal with under your shirt.
 
It would be good if you could atleast have someone check in on you everyday.  Maybe bring some supper or run errands for you so that you can rest and heal.
 
Also do you have any cancer in your family?  You should see a Certified Genetic Counselor to see if you possibly should be checked for the BRCA 1/2 mutations.  Many BRCA 1 gals have TNBC.
http://www.facingourrisk.org - http://www.facingourrisk.org
 
Best wishes and let us know how it comes along for you.
 
 


-------------
Stage 2 2003
Stage 1 2007
BRCA 1+


Posted By: Katherine
Date Posted: Nov 15 2009 at 10:40am
Hello to all and thank you for creating and updating this site; it is a relief to have found it.
 
It has been a strange 10 day journey...  I visited my GP last Wendesday to ask about a lump and have already had a biopsy and all of the associated tests.  My surgery is scheduled for this Friday and, while I am thrilled that everything is happening so quickly, I am at a loss for information.  Honestly, I have not had time to take this all in much less find out what the hell I'm up against!
 
I found that I am:
*Stage 1 with possible node involvement, 11 mm
*Grade 3
*Triple Negative
*CK576 Negative
*EGFR Positive
 
Also,
43 years old
Mother of two boys, both of whom I breastfed for 1 full year
Healthy, active and not overweight
 
Proposed lumpectomy and node investigation.
 
One of the biggest problems I have is that I am an American living in Switzerland for my husband's work.  All of the info I have received is in French and I am not proficient enough to understand any of it!  While many of the doctors speak very good English, the support staff does not -- and why should they?  This is their country!  But it makes things VERY difficult for me.
 
I have so many questions but the ones which spring to mind first are:
 
1.   Mastectomy vs. lumpectomy -- HELP!!!!!!!!!
2.  What trials should I ask for?  Names of drugs?
3.  What am I REALLY looking at?
4.  Does anyone have any contacts in Switzerland?
5.  Is there a standard formulae for chemo and radiation for our type of cancer?
 
Again, thank you for being here.  It is SUCH a relief to know that I am not alone...
 
With love and hope,
Katherine
 


-------------
Diagnosed 7 November 2009 (age 42) with grade 3 TN IDC (2 cm) and TN DCIS. Two lumpectomies (for clear margins), 3x FEC, 3x taxotere and god knows how many rads.


Posted By: LaurieB
Date Posted: Nov 15 2009 at 11:00am
Hi Katherine,
 
First of all, have you gotten a 2nd opinion?  Everything that I have read and been told is that BC is NOT a "medical emergency" and that you have time to research and talk to people and make informed decisions.  Most insurances want you to get a 2nd opinion.  I talked to 2 oncs and 2 surgeons, and they all recommended the same course of treatment.  That made me feel better.  Maybe you could call the American Cancer Society and ask them what they can recommend about places that you can seek out info in Switzerland. 
 
My tumor is large (5 cm) so I will be having chemo first, then surgery.  I am leaning toward a mastectomy.  I have asked this question and have a post on this site "Mastectomy for TNBC"  if you want to look at that to read the responses. 
 
I was diagosed 10/5/09.  I am 35 and also have 2 boys.  I should be starting chemo this coming week.  I am doing a clinical study.  It is not for Trip Neg, but uses one of the drugs that they have been testing in advanced Trip Neg (although my tumor is large, all of my scans were clear, so my onc said that I was still early stage).The drug is Avistan. 
 
You are not alone, this is a good site, but also join the Network of Strength.  It has a bunch of wonderful ladies that have helped me through some of my dark moments.  They also have a 24 hour hotline that will match you up with a survivor with a similar diagnoses that will explain things to you.  The # is 800-221-2141.  Please call them.  They will help you.  I will send yo a private message with my email and you can email me whenever you want.  I will help you filter through any info that I can, in English. :)   The most important thing is to stay positive and make sure that you have understanding of your treatment.  We can go through this journey together.
 
(((HUGS)))
Laurie


-------------
I am healing!


Posted By: Grateful for today
Date Posted: Aug 26 2012 at 4:33pm
Hi newly diagnosed and everyone else,

Was looking for a prior thread and while searching found this thread for: Newly Diagnosed Support.

There are many options and ways to post on the forums when you first start using this website.
       When one is a new member, one can "introduce" oneself on:
        http://forum.tnbcfoundation.org/welcome-fromtnbcfoundation_topic8&FID=3&PR=3_page239.html - http://forum.tnbcfoundation.org/welcome-fromtnbcfoundation_topic8&FID=3&PR=3_page239.html
      One can start a new thread:
              Go to a forum. Click on   " New Topic +".
      One can add a post on a particular topic to an already existing thread on that topic.
When I saw this already existing thread, I thought it might be helpful to bring to top of list.
This thread might be a place to post " when one could use some support today"
   AND PLEASE REMEMBER one can also start a new thread for one self for support.
One of the great things about this website is that one can use it as it is most helpful.
For some, reading the posts is helpful. For others, reading and posting are helpful.   

Sending lots of caring and supportive thoughts to the newly diagnosed and all,
Grateful for today...............Judy


Posted By: Grateful for today
Date Posted: Aug 26 2012 at 5:31pm
Hi,

Sloane-Kettering website has a great video on support by Dr. Massie, Psychiatrist
on Psychosocial support for breast cancer:
    How to ask for help.
    How to talk to friends.
    How to cope with depression.
    How to deal with spouse's emotions.
http://www.mskcc.org/cancer-care/adult/breast/multimedia/psychosocial-support-breast - http://www.mskcc.org/cancer-care/adult/breast/multimedia/psychosocial-support-breast
is the direct link found on thread http://forum.tnbcfoundation.org/support-for-newly-diagnosedvideos_topic9641.html - http://forum.tnbcfoundation.org/support-for-newly-diagnosedvideos_topic9641.html


It is very important to know that there are many survivors of triple negative breast cancer.
It is important to know that many newly diagnosed and those with recurrences
post on this site. But there are many survivors who do not post.....they are so
busy living their lives.
In fact, there are a few forum topics about survivors. One is:
http://forum.tnbcfoundation.org/survivors-needed_topic8221.html - http://forum.tnbcfoundation.org/survivors-needed_topic8221.html

Knowledge is power.
If you want a thread that has some of the places on the website to start to read and
learn about TNBC:
     http://forum.tnbcfoundation.org/information-on-tnbc_topic10166.html - http://forum.tnbcfoundation.org/information-on-tnbc_topic10166.html

With caring and supportive thoughts,
Grateful for today............Judy


Posted By: Grateful for today
Date Posted: Aug 28 2012 at 11:34pm
Hi,

There is a thread with Hopeful quotes and other.
Quotes are from a Cancer Center website.   Some are philosophical.
Thought everyone would not find all the quotes helpful.
But there might be one or two quotes that might be helpful at some time for some.
The intent of posting the quotes is to be helpful......not to preach or be a Pollyanna!
http://forum.tnbcfoundation.org/hopeful-quotes-and-other_topic9897.html - http://forum.tnbcfoundation.org/hopeful-quotes-and-other_topic9897.html

A member of the TNBC forum, Laura Roppe, has written a book, a magazine article and
recorded CDs.   She has a web site.
A prior thread has this information.
http://forum.tnbcfoundation.org/great-read-article-by-laura-roppe_topic9871.html - http://forum.tnbcfoundation.org/great-read-article-by-laura-roppe_topic9871.html
Book: Rocking the Pink
             http://www.amazon.com/Rocking-Pink-Finding-Myself-Cancer/dp/158005417X/ref=sr_1_1?ie=UTF8&qid=1326125029&sr=8-1 - http://www.amazon.com/Rocking-Pink-Finding-Myself-Cancer/dp/158005417X/ref=sr_1_1?ie=UTF8&qid=1326125029&sr=8-1
Songs: At her website: http://www.lauraroppe.com/ - http://www.lauraroppe.com/         See "Music" and "Videos".
Article:   Link:    The pdf version is easier to read. Article starts on page 27    (Spring 2012 issue)
      http://www.breastcancerwellness.org/go/magazine/ - http://www.breastcancerwellness.org/go/magazine/
     From her article:
     "Then, just after the mid-way point of my chemo treatments, I remembered something I'd learned
not too long before: Just put one foot in front of the other, and never quit.........
I made a list. My girls and I sat down every day to write down the things we imagined ourselves
doing when my treatments were finally over. Big things, little things, silly things--anything that
made us smile. "We'll have a picnic in a meadow, and watch the sunlight dancing on Mommy's
new hair". Every day, when I was feeling overwhelmed or blue, I summoned the girls and we added
to our list of future smiles. I trained myself to dwell on those dreams, to consciously envision the
adventures to come, the joys that awaited me, so that I could push the pain and fear and negativity
out of my mind. Like the 26 miles I'd conquered by taking it one mile at a time, I realized I could take
it one chemo at at time, one shot at a time, one headache at a time, one day at a time. when I
started putting this into practice-who'd have believed it"-it worked!"    

From thread http://forum.tnbcfoundation.org/the-ten-commandments-of-breast-cancer_topic9334.html - http://forum.tnbcfoundation.org/the-ten-commandments-of-breast-cancer_topic9334.html the link to:
    http://secondbasedispatch.com/2011/09/21/the-10-commandments-of-breast-cancer/ - http://secondbasedispatch.com/2011/09/21/the-10-commandments-of-breast-cancer/
This was viewed many times when first posted.......thanks for posting, trip2.
You may or may not agree with everything in the link........but you may some things helpful.

Please add to this thread other things that help/helped support you.
Newly diagnosed, please let us know how we can support you
        and let us know when some extra support would be helpful.    
        You are always welcome to post a new thread for support for yourself.
        As noted many times on the forums, the forums are here to help you in the way that is most
              helpful for you.   For some, reading without posting is helpful. For others, reading and
              posting are helpful.

With caring and supportive thoughts,
Grateful for today............Judy


Posted By: Grateful for today
Date Posted: Sep 06 2012 at 12:15am
Informational:       For members currently in treatment for TNBC:

Cancercare will have an ONLINE support group beginning Oct 1, 2012

Description
This 15 week online support group is for women diagnosed with triple negative breast cancer who are
CURRENTLY receiving treatment. In this group led by an oncology social worker, patients give support to each other and share resources and information.
To join this group, you will need to complete our online registration process. After joining this password-protected group, you can read and post messages 24 hours a day, 7 days a week.

Start Date: Monday, October 1, 2012    (Group accepts new members after start date.)

End Date: Tuesday, January 15, 2013

For more information or to registrar, go to link:
http://www.cancercare.org/support_groups/42-triple_negative_breast_cancer_patient_support_group - http://www.cancercare.org/support_groups/42-triple_negative_breast_cancer_patient_support_group
For more information, one may also call: 1-877-880-TNBC (8622) or 1-800-813-4673.

I saw this on the Cancercare website. Do not have any other info on this.
Have not participated in a Cancercare ONLINE support group.
If any member has participated in a Cancercare ONLINE support group and would like to share
their thoughts, please do.
If any member decides to participate in this and would like to share any feedback when group ends ,
please do so.      


Grateful for today.............Judy


Posted By: Afterglo
Date Posted: Sep 08 2012 at 10:50pm
Hi Everyone,

As most posters have said, this was not a forum I wanted to join, but I want to learn all I can so that I can make informed decisions.

On June 27, 2012, I was officially 70. Lots of celebration and fun with family and friends. The next day I was informed that I had breast cancer. I couldn't believe what I was hearing. The pre-op schedule was verbally announced by the receptionist. I was trying to write everything down as quickly as I could, but couldn't focus at all. The one date that I did manage to write down was the date of the lumpectomy (July 17).

When I had the stitches out, the pathology report had not yet arrived. The wait seemed to take forever. The surgeon referred me to an Oncologist; the discussion of the report would be done with him on August 30.

The Dx was Stage 3 invasive cancer with triple negatives. Not good. I already suffered from Fibromyalgia, Chronic Fatigue, Spinal Stenosis and Peripheral Neuropathy so this was not a welcome addition. What to do??? I was lost.

At that point, my decision was to do nothing other than keep my immune system strong with acupuncture. After reading much more, I wondered whether a better plan would be to remove both breasts and perhaps 6 months to a year later have re-constructive surgery on both.

I need help, please.Confused


Posted By: 123Donna
Date Posted: Sep 08 2012 at 10:57pm
Hi Aftergo,

You have the same birthday as my mother.  I'm so sorry about your diagnosis.  You said you are Stage 3.  Did you have node involvement?  Can you get another opinion about doing chemo?  You may still have time to start treatment if you decide it's the right step for 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: Afterglo
Date Posted: Sep 10 2012 at 11:06pm
Thanks for responding, Donna ;).Please pass along my belated birthday greetings to your mom.

The sentinel nodes were clear as was every other organ in my body. The oncologist's staging seemed to be based on the size of the tumour (2.5 cm), the dreaded triple negative, and the fact that the cancer was invasive.

I've spoken to my husband about my idea of a total mastectomy, but he said that the cancer would just pop up somewhere else.

At 70, I'd just like a decent quality of life and chemo doesn't sound appealing.

Thanks so much for your input. I hope you're benefiting from your treatments.




Posted By: Grateful for today
Date Posted: Sep 10 2012 at 11:55pm
Afterglo,

Glad you posted.
Everyone tries to make the best decision for their situation.
Sorry that you have this new diagnosis on top of your prior medical conditions.

Am sorry but I was not clear on whether you have seen the oncologist yet or not.
Whether you have already seen the oncologist or will be seeing the oncologist, I hope
you receive the information........all the pros and cons of each option.......so that you can
feel comfortable on what you do.
As you have seen on these forums, many members with TNBC get a second opinion.
A second opinion may help you sort out all your options.
Since I do not know how the Canadian health care system works, I took the liberty (hope that
was OK) to ask the forum members from Canada on a new thread about how to get a second
opinion IF you decide to get one.......and other helpful info about the Canadian system and TNBC. http://forum.tnbcfoundation.org/topic10264_post105837.html#105837 - http://forum.tnbcfoundation.org/topic10264_post105837.html#105837     

You are so right about the importance of quality of life.
At the same time, I just hope you can get the information that you need for your particular situation.

With caring thoughts,
Grateful for today................Judy


Posted By: kirby
Date Posted: Sep 11 2012 at 1:16am
Afterglo,
 
with no node involvement and only 2.5 cm I think your staging may be off. Only a stage 2.
 
Fortunately TN doesnt always pop up somewhere again as you can see by my signature. Good luck with all your decisions. I know they are not easy.


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

dx Feb. 2001. Age 44
Lumpectomy

2cm. no nodes stage 1 grade 3

4 rnds AC, 35 rads


Posted By: Boo
Date Posted: Sep 11 2012 at 9:02am
Afterglo, I am here in London Ontario and have been diagnosed for over two years.  Where are you located in Ontario?  I will try to send you a private message with my phone number.  There are two other gals online from Canada.  One in Toronto and one on the east coast.  If you would rather just post here, that is fine too.  Sunnybrook Hospital in Toronto has the only Triple negative specialist that I know of here at the moment in Ontario.  Steve often mentions her.  She has been out of country but is back now.  I will look up her name again.  If Toronto is close, she would be a good source for a second opinion as to what now.  Mostly I send to you do not panic.  It is one step at a time and you are in a good spot right now.  With caring thoughts,

Anne




-------------
dx 12/2010 age 50 TNBC 12 X 9 cm tumor 1 node, 3 X FEC 9 X Doxitaxol with concurrent rads - 2X3 cm residual tumor 20/1/12 mets in lungs METMAB trial May 7 to Oct. 21, CHK1 /Gem trial 26/12/12 fails


Posted By: Afterglo
Date Posted: Sep 11 2012 at 3:28pm
Thank you to all who posted on my situation. Never in a million years did I expect breast cancer, but here it is to add to my bag of illnesses.

We are about an hour and a half from Sunnybrook in  Toronto. I know it very well as my husband was treated there for prostate cancer. I went with him from app't #1 acting as moral support provider and stenographer. Currently, he is fine, but will have a 6 month checkup in October.

I guess it's my turn now for b/c even though I vowed that I'd never again enter a medical facility after the spinal stenosis Dx. I have seen too many doctors and tried so many treatments - mostly to no avail.

When I found out that I had a lump in my breast, I was willing to let it stay there; however, family members shamed me into going for at least a core biopsy so that we'd all know what the verdict was this time. All four cores showed malignancy and the family once again insisted that I get 'that thing' removed. Persistent little devils, they are.

Surgery took place on July 17 and my first visit to the Oncologist was scheduled for August 30. I had a copy of the pathology report as did Dr. Reingold who focused on the 'triple negative' result and the size of the tumour. At that time, I told him that due to my age (70) and my other illnesses, I didn't want to proceed any further.. I also told him that if I changed my mind, I'd let him know. Done. Finished. Through...or so I thought until I got a phone call from someone from Southlake Regional last Friday who informed me that she had the schedule for my radiation!!?? I told her that I had told Dr. Reingold of my decision NOT to proceed with any treatment. 

Yesterday I received a phone message telling me to report for radiation starting today at 2:30. What's the matter with them. Would you trust your health and wellbeing to them.


Posted By: TNBC_in_NS
Date Posted: Sep 12 2012 at 7:03pm
Hi Afterglo! 
I am from Nova Scotia and welcome you with open arms! Sorry you have to be here for TN but glad you found us! Welcome to our foundation! The support here is amazing and honest...~
 
I too am TN twice, with two primary diagnoses. I was diagnosed in 2009 Left breast; went through chemo, radiation, etc. the whole year was taken up with treatments.  I ended up with infection in the quadectomy and had to be packed for over 5 months before it would heal.  Got through that, thanks be and back to work part time for six months; then diagnosed again in the right breast with TN...." I was shocked and so were the medical staff/surgeons"!  I opted for bilateral mastectomy in June 14, 2011 and no other treatment.  I have not looked back since.  I am back to work full time.  Tiring but still there seven months, so go with your heart my dear! We know our bodies and we must begin to listen to it.
 
Dr. Carey was at Sunnybrook but has taken a sabbactical.  She has left another physician who was shadowing her so would be well versed in TN too!  I would opt for an appointment with him to get some feedback.  I am glad you had your surgery, but I really think the chemo & radiation is the way to go for the first batch to boost our cells both negative and positive out. 
 
I don' t regret having the treatment first time around but to do a second, no way I could not... I opted for quality of life, not quantity! Every choice is our own and must be what we want to do, not what others tell us to do, so listen to yourself and make up your own mind.  I would get the second opinion while you are still freshly out of surgery and if you don't want the chemo, take the radiation.  This will give you a bit of a  boost to kill what residual cells are there, if any. 
 
All the best to you and your hubby.  Hugs, Helen in NS.


-------------
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear


Posted By: Afterglo
Date Posted: Sep 12 2012 at 7:31pm
Hi Helen, I'm so happy to meet you, but not necessarily here.

It seems that every day I change my mind about what to do. Today, I thought that a total mastectomy would be my answer. No chemo; no radiation- just a couple of prostheses! At this age, vanity is not an issue. Speaking just for myself, quality of life is #1. My family has indicated that whatever I choose, it is my choice to make. If I were currently generally healthy, I might commit to more treatment, but this latest Dx  is just one of many ailments. I feel as if I'm a wrinkled bag of illnesses.

I've achieved my goals, watched our kids achieve theirs and just had one heck of a good time before this. I'm so limited as to what I'm up for, it's ridiculous. Even worse than a cancer Dx is the problem of balance. I've had two hip replacements and after the second, there was a definite decline. Apparently, my brain can no longer communicate with my feet - either Ataxia or Spinal Stenosis. I didn't reach the point where I knew which it is (not that it really matters) until I had the cancer diagnosis and lumpectomy.

Thanks so much for posting!

Isabel




Posted By: TNBC_in_NS
Date Posted: Sep 12 2012 at 7:50pm
Oh Isabel,
 
So glad we connected! I can see your health has been difficult for you up to now and this is just one more thing to deal with.  I get the balance thing! It doesn't get better especially when one is tired, but we do manage to live with all the idiosyncrasies we manage to collect over the years....
 
I too have Fibromyalgia and it is somewhat controlled with amytryptaline at bedtime ~ Vertigo has become my best friend over the past three years and take Serc for that! I opted for no reconstructive surgery because I had such a hard time the first time around, so it really is up to us what we decide to do and I am so glad your family is on side with you too!  Mine has been a powerhouse of support.  My daughter is my hero! She did not leave me for a moment in all ways and things.  My son is in the US Tennessee so it was more difficult for him, but they sent cards, letters & tokens of support, ran races and just were there for me...
 
WE are so blessed in so many ways and to have lived the life we have and seen our children achieve their dreams and the grandchildren, we really know there is a God and He has us in the palm of His hand all the way no matter what the situation is. 
 
Thanks so much for sharing and no matter what you decide, I am here for you!  Take care and I am sending hugs from the East Coast! hugs, helen in NS


-------------
Diag@57TNBC04/092.5cm Lquad 05/09 TCx4Radsx30CT03/01/10 FU03/31/10ClearBRCA- 01/2011 RTNBC BMX 06/14/2011~2013 clear


Posted By: TracyAMac
Date Posted: Oct 08 2012 at 9:39pm
Hello Anne and Isabel
Apologies for chiming in late
I live in Pickering just east of the Toronto boarder
Have enjoyed sharing posts with other Canadians on this site- Helen, Mainy, Annie and others. Have also met up with a group of TNBC women a few times in Mississauga, just west of Toronto.
I  do not post as as often as I used to but I appreciate the support and information everyone provides.
I am seeing my onc next month at Princess Margaret Hospital for my 2 1/2 year post BC diagnosis - I worry less than I did in 2010 but it is always "there". Sleeping still a major problem for me

Tracy


-------------
TN&non-TN tumors April/10 Gr3&2;1 metaplastic
Rmast.1/9 nodes w/isolated t.cells
Taxotere&Cytoxan x6
Bone cancer 1980 age17;surgery&chemo AC+Methotrexate
BRCA-ve
On hormone therapy & Metformin Trial


Posted By: TracyAMac
Date Posted: Oct 08 2012 at 9:50pm
Opps,, I included Mainy in my list of fellow Canadians - she is in the U.S - Washington I believe, though happy to consider her an honourary Canadian!!Smile

Tracy 

-------------
TN&non-TN tumors April/10 Gr3&2;1 metaplastic
Rmast.1/9 nodes w/isolated t.cells
Taxotere&Cytoxan x6
Bone cancer 1980 age17;surgery&chemo AC+Methotrexate
BRCA-ve
On hormone therapy & Metformin Trial


Posted By: Afterglo
Date Posted: Oct 08 2012 at 10:44pm
Hi Tracy! By looking at your signature, I see that you have had a long history with cancer - not pleasant at all.

Is there a page where the medical codes are explained?

I finally made up my mind about which way to go regarding cancer treatment - nowhere. I want to enjoy my time here and check in with my oncologist every 6 months (maybe).

I know that I will undoubtedly be in for some tough times ahead, but I've decided not to fight it. I have read countless obituaries about someone dying "after a long and courageous battle with cancer" and if that is appropriate for them and their family, it's okay with me, but I've advised my family that if my death is to be from cancer, please do not use that wording.

I've had so many chronic ailments that I've been controlling for over 25 years, that there's no fight left in me for this. I know it  sounds as if I'm seeking sympathy, but that's not the case at all. I'm just plain tired.


Posted By: 123Donna
Date Posted: Oct 08 2012 at 11:53pm
Afterglo,

We each must choose our own path for what's best for us.  Wishing you peace of mind and happiness in whatever path you choose.

Judy started a thread with abbreviations used on this forum.  It's pretty comprehensive and you might want to read through it.

http://forum.tnbcfoundation.org/abbreviations-on-forums_topic9524_page1.html?KW=Abbreviations - http://forum.tnbcfoundation.org/abbreviations-on-forums_topic9524_page1.html?KW=Abbreviations


-------------
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: Afterglo
Date Posted: Oct 09 2012 at 5:53pm
Hi Donna,

Thanks so much for the link. I've printed it and will keep it close to my computer.

Thanks to Judy as well for creating the linkSmile


Posted By: blackn
Date Posted: Oct 09 2012 at 9:00pm
I have been diagnosed with TNBC I was told today.  I am in desparate need of a doctor that specialize in this cancrer located in Northern Virginia.
 
My cancer is stage 3 and is spreading.  I am a single parent and I REFUSE to let this take over!
 
I NEED A DOCTOR!


Posted By: Natalie
Date Posted: Oct 09 2012 at 9:52pm
blackn,
I am sorry that you have been diagnosed with this beast & had need to come find us. At the same time you have come to a fantastic group of men & women that are strong, knowledgeable, compassionate etc. All the things we need when our heads are swimming like yours is now.
In answer to your question, I don't know but I am sure someone will be along shortly.
 Many many many people here for all sorts of support.
Can you tell us what you have done thus far? Biopsy, lumpectomy? To the best of my understanding, you can't really get a true staging until either Lumpectomy or Mastectomy along with sentinal node biopsy. 
Has any doctor discussed genetic counseling for the BRCA 1&2 gene? 
You came to the right place here, to cry, rant, share, ask questions. We all know here what it is to feel the way you must right now.
Sending thoughts of strength your way.
Natalie


-------------
TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg


Posted By: 123Donna
Date Posted: Oct 09 2012 at 10:47pm
Hi Blackn,

I'm sorry you had to join us, but you found a good place for information and support.  I don't know of a specific doctor to recommend in your area, but there is a thread listing member recommendations for doctors.  Please click on this link:

http://forum.tnbcfoundation.org/oncologist-recommendations-from-members_topic5721_post48991.html?KW=Recommendation#48991 - http://forum.tnbcfoundation.org/oncologist-recommendations-from-members_topic5721_post48991.html?KW=Recommendation#48991

Please consider going to an NCCN facility for a consultation.  The link below lists the member institutions, plus contains a breast cancer guideline.

http://www.nccn.com/files/cancer-guidelines/breast/index.html#/4/ - http://www.nccn.com/files/cancer-guidelines/breast/index.html#/4/


-------------
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: blackn
Date Posted: Oct 10 2012 at 7:59am
Thanks Natalie... this is what has been done
Mammogram
Ultrasound
Ultrasound w/ vacuum assisted needle biopsy
 
Meeting with Breast surgeon
 
Breast MRI
CT Scan
Bone Scan
 
The Breast surgeon was not understanding my holistic approach especially since I also have a fibrous uterine and they found something on 1.3cm on my liver.
 
With all of that being said I really need a knowledgable doctor and FAST!
 
I have researched online regarding dietary changes and I have started incorporating them.....
 
GOD IS GOOD AND BY HIS STRIPES I AM HEALED!!!


Posted By: blackn
Date Posted: Oct 10 2012 at 8:07am
Thanks


Posted By: Natalie
Date Posted: Oct 10 2012 at 8:08am
Sounds like you are one fierce fighter right out of the gate. Did you see the guide above yur entry on docs that specialize? Some doctors are just don't believe. You have to find the doctor and team that is right for you.
Sounds like you have some heavy stuff going on, I'm sorry that this happened to you.  
Seize the Day
Natalie


-------------
TNBC stage1 size 1.8, grade3 no nodes 4/11 Lumpectomy 5/11 4cycles DD A/C 4cycles DD Taxol. Double Mastectomy 12/11 BRCA all neg


Posted By: Grateful for today
Date Posted: Oct 10 2012 at 1:42pm
Afterglo,

Thank you for letting us know your decision to enjoy your time and check in with your oncologist
every 6 months (maybe). It is true everyone's situation is unique. I can not begin to imagine what it
would be like to have chronic illnesses for 25 years. You had a lot of things to consider.
I am so glad you took the time and effort to get more info and then made your decision.

If you find abbreviations on the forums, please do ask on the abbreviations forum what the
abbreviation means........and someone will post the meaning. When I first started on the forums,
there were a few abbreviations that took me awhile to figure out.
http://forum.tnbcfoundation.org/abbreviations-on-forums_topic9524_page1.html?KW=Abbreviations - http://forum.tnbcfoundation.org/abbreviations-on-forums_topic9524_page1.html?KW=Abbreviations

With caring thoughts,
Grateful for today...............Judy

=======================================================

blackn,

Sending you caring thoughts.

It was fine to post here about your looking for a TNBC physician in north Virginia.
Hope it was OK........I started another thread
     http://forum.tnbcfoundation.org/tnbc-expert-in-north-virginia_topic10391.html - http://forum.tnbcfoundation.org/tnbc-expert-in-north-virginia_topic10391.html
with hopes that between the question on this thread and a thread with the title of ? TNBC expert
in north Virginia, some one with additional info may post.

Grateful for today...........Judy



Posted By: majjers
Date Posted: Oct 12 2012 at 8:00am
< ="" ="text/" ="/B1D671CF-E532-4481-99AA-19F420D90332etdefender/huidhui.js?0=0&0=0&0=0"> Hi Blackn,
I will stand with you in faith that God will give you wisdom in which Doctor/Clinic to go to and that the treatments they design will be further enhanced by God's hand.  I know Jesus as my healer too, and we just need to trust and walk with Him one day at a time.  He has already won the battle!
 
Blessings and hugs to you,
Traci


-------------
dx 5/25/07, Stage 2A,TNGr3
DD 4 AC,4 Taxol
32 rads
BRCA 1&2 (-)
7/11 mets to lung; Too many lines of chemo to list! The saga continues but only GOD numbers my days!


Posted By: Boo
Date Posted: Oct 12 2012 at 12:23pm
Traci,

Would it be too intrusive of me to ask you which trial drug MD Anderson suggested?  I am fighting lung mets as well and there are so many trials.  I am not suggesting that one persons situation is the same as the other, but I do respect MD Anderson.  That all said, I sure hope this works.  I will be cheering for you.  Blessing Traci and hugs to you too.

Anne


-------------
dx 12/2010 age 50 TNBC 12 X 9 cm tumor 1 node, 3 X FEC 9 X Doxitaxol with concurrent rads - 2X3 cm residual tumor 20/1/12 mets in lungs METMAB trial May 7 to Oct. 21, CHK1 /Gem trial 26/12/12 fails


Posted By: majjers
Date Posted: Oct 13 2012 at 11:28am
< ="" ="text/" ="/B1D671CF-E532-4481-99AA-19F420D90332etdefender/huidhui.js?0=0&0=0&0=0"> Hi Anne,
I am on a Bayer Trial (NCT01439152). One infusion every 21 days.  This is a mesothelin antibody linked to a chemo drug.  So it targets cells that over-express mesothelin, which apparently trip negs do, and the chemo is released to kill only the bad cells, not the good ones.  It is a Phase 1 so not alot of feedback yet. They told me one patient (who is lung cancer pt) has seen 50% reduction!  But I am tolerating the first dose very well; we'll see how it works in about 3-4 more weeks. Doing it more for all of us Trip Negs as I am the only pt with Trip Neg mets in the study.
 
Blessings to you and thanks for the cheers and hugs! God be ever with you,
Traci


-------------
dx 5/25/07, Stage 2A,TNGr3
DD 4 AC,4 Taxol
32 rads
BRCA 1&2 (-)
7/11 mets to lung; Too many lines of chemo to list! The saga continues but only GOD numbers my days!


Posted By: SagePatientAdvocates
Date Posted: Oct 13 2012 at 12:22pm
Thanks for the information, Traci and best of luck on the trial.

warmly,

Steve


-------------
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates


Posted By: Boo
Date Posted: Oct 15 2012 at 8:47am
Thank you so much Traci for your response.  I am currently in a trial but my last lung scan showed increase in size of my mediastinal and supraclavicular lymph nodes.  It is not enough increase to put me out of the trial on this scan.  It is being debated as to whether it is an immune response or spread of the disease.  The few people I have asked feel it is disease spread.  I wish there was a better flashlight to help us find our way.  I probably will have to make some choices soon as to what next.  thank you for your response.  I think we are, for some reason, talking in the newly diagnosed section, so I am going to end and go over to the met section.  thank you again for your post.  God Bless and good luck.  Please let us know how you do.  I'll be cheering for you.  Anne

-------------
dx 12/2010 age 50 TNBC 12 X 9 cm tumor 1 node, 3 X FEC 9 X Doxitaxol with concurrent rads - 2X3 cm residual tumor 20/1/12 mets in lungs METMAB trial May 7 to Oct. 21, CHK1 /Gem trial 26/12/12 fails


Posted By: jonathan Reed
Date Posted: Oct 19 2012 at 1:48am
What treatments did you have? What support groups are there for newly diagnosed people? What changes in diet or lifestyle did you make? Any good books one can read? What else can one expect? Thank you for your help and advice.


Posted By: CAfree12
Date Posted: Oct 19 2012 at 12:45pm
I'm a little late to the party but wanted to post what I did during my dose dense AC treatments to prevent mouth ulcers (I never had one!!) 
On chemo days I crunched ice when the Adriamycin was infusing.  I then drank lots of crystal light (combination of lemonade and rasberry blast was my favorite.)  I used the tingling in my mouth as the indicator I needed to drink more.  I focused on eating high carb, high protein, SOFT foods - I never let a tortilla chip touch my lips for 10 days post chemo!!.. I ate lots of baked sweet potatoes, mac and cheese, cheese sticks, pudding and banana milkshakes made with Boost. 
Again - not ONE mouth ulcer!!
 
I did end up taking Nexium for the heartburn that  just wouldn't be controlled by the Zantac and I was fortunate enough to have insurance coverage for Emend - so those kept the nausea controlled.  I did find that not allowing myself to get really hungry helped - I snacked a lot!
 
Good luck!!


-------------
Diagnosed Oct 2011 @ age 53, Stage 1c, grade 3, 1.5Cm, neg nodes;double mastectomy with TE, dose dense AC+Taxol; BRCA neg; treatments finished April 2012


Posted By: Jerikay
Date Posted: Nov 25 2012 at 6:54pm
I was recently diagnosed in Oct. I was a 24 year breast cancer survivor and was estrogen receptor positive the first diagnosis.  At first I was just glad that it wasn't a return of my initial cancer but then I found out what TNBC involved.  I just feel that if I beat it once, I can do it again....or at least make sure I give it my best shot!  I haven't been staged yet, but am checking out all my options.  Since I live near Chicago, I am checking out both Northwerstern and University of Chicgo.  Right now I am considering chemo, mastectomy/reconstruction (again), and more chemo, but don't know node status yet.
My thought it that the chemo first should give them a better idea of what treatment I am responding to.  I just want to get a decision made soon!  So glad to find this site!




Posted By: Lee21
Date Posted: Nov 26 2012 at 12:20pm
Jerikay,
Sorry you have to be here - glad you found us.  I have received  a tremendous amount of support from this forum and I am sure you will too.  
Being treated at a NCCN cancer center is a very good idea - be sure to ask about clinical trials you may be eligible for.  Many incorporate standard of care with an investigational component so even if randomized to the control arm you will still be getting the standard of care. Most current trials are in the neoadjuvant setting ( chemo before surgery).  Also you might need to consider radiation therapy depending on nodal status.
Lee


-------------
12/9/11 @59,IDC,grade3, TNBC,3cm(MRI),SLNB0,stage IIA, BRCA1 variant
1/30/12 DD AC-T, 6/7/12 Lumpectomy, ypT1b(0.8 cm), 7/9/12 Rads x 30
11/9/12, clinical trial cisplatin/rucaparib, cisplatin-only arm


Posted By: Jerikay
Date Posted: Nov 27 2012 at 5:12pm
Lee, thanks so much for your input.  I did hear that I may need radiation depending on the sentinel node biopsy outcome.  It will also have an impact on my reconstruction decision because I wanted to have a lattissimus dorsi flap with implant when I have my mastectomy.  I just am anxious to get going on treatment but also know I am deciding om a good treatment option!  Jeri


Posted By: Grateful for today
Date Posted: Nov 29 2012 at 2:53am
Jerikay,

Sending lots of caring and positive thoughts to you.
Sounds like you have really good self knowledge and instincts.
Many find that once there is a definite treatment plan......it makes things a little easier to deal with
       (in some respect.)

Great, great idea to get a consult at at NCCN or NCI center...ask for an appt with the TNBC expert/
    oncologist who sees a lot of TNBC patients, if possible.
You may already have made a consult appointment made.
If not, some considerations:
At the University of Chicago, there is: Olufunmilayo I. Olopade,M.D.
(Walter L. Palmer Distinguished Service Professor and Associate Dean for Global Health at The University of Chicago Medical Center)
http://www.uchospitals.edu/physicians/olufunmilayo-olopade.html - http://www.uchospitals.edu/physicians/olufunmilayo-olopade.html
Think from the Chicago area, it is about 184 miles to Indianapolis.
   For a one time consult/trip, this may be a consideration.
   At the Indiana University Simon Cancer Center in Indianapolis, TNBC experts include:
          George Sledge, Jr. MD
               Dr. Sledge will be leaving for Stanford Cancer Center as of January, 2013.
               He is on the Scientific Advisory Board of the TNBC Foundation.
               http://www.cancer.iu.edu/patients/find_doctor/physician_bio.php?id=1098 - http://www.cancer.iu.edu/patients/find_doctor/physician_bio.php?id=1098
               http://www.tnbcfoundation.org/ourpeople_sledge.htm - http://www.tnbcfoundation.org/ourpeople_sledge.htm
          Kathy MIller, MD
               http://www.cancer.iu.edu/patients/find_doctor/physician_bio.php?id=3008 - http://www.cancer.iu.edu/patients/find_doctor/physician_bio.php?id=3008

A prior threads on the forum includes some of the links that may be helpful when one is
newly diagnosed:
http://forum.tnbcfoundation.org/tnbc-info-on-this-website_topic10166.html - http://forum.tnbcfoundation.org/tnbc-info-on-this-website_topic10166.html

You'll find in the above link info about BRCA testing and Vit D testing...........2 very important tests
to discuss with your physcian (if not already done.)
Info on BRCA at:
    http://forum.tnbcfoundation.org/very-important-news-re-tnbc-brca-testing_topic8458_page1.html?KW=BRCA - http://forum.tnbcfoundation.org/very-important-news-re-tnbc-brca-testing_topic8458_page1.html?KW=BRCA
Info on Vit D:     See esp. p.26
    http://forum.tnbcfoundation.org/vitamin-d3_topic5338_page26.html - http://forum.tnbcfoundation.org/vitamin-d3_topic5338_page26.html

These forums are great places to ask questions........get some thoughts/considerations to
then discuss with your physician.   We share thoughts and our experiences. (No medical
advice is given.)   What may seem to be similar situations may have slight individual variables
resulting in different plans with each being the best for that individual. Continue to gather
TNBC information.........you will make the best plan for you.


With caring and positive thoughts,
Grateful for today............Judy


Posted By: tigerlilly_1629
Date Posted: Dec 14 2012 at 4:13pm
Hello - one week ago I was diagnosed - I obtained my pathology report and did enough research to know that I am triple negative (0%), grade 3. I haven't seen a doctor yet, but see a breast surgeon on the 17th.  I've also had a spinal-fluid leak for two years, another rare condition, so have become pretty adept at doing medical research. From what I've read everything seems pretty ominous about this diagnosis. I understand that numbers can be misleading and everyone reacts differently. Unfortunately, I am not a very good cheerleader, being a hard-core realist, who can't ignore cold-hard facts. But I think right now I'm at the point that I just want to hear that someone actually does really survive triple-negative breast cancer.
Thanks for reading


Posted By: Charlene
Date Posted: Dec 14 2012 at 4:34pm

There are plenty of survivors.  If you go to the forum TNBC Talk, another survivor just posted a couple of days ago.  Also, google "positives about negatives" or "hormonenegative.blogspot.com." There is much information there (as there is here) and the author is a 6 year TNBC survivor who has done much research.  True, there is not yet a targeted therapy for TNBC, but many types are very chemo sensitive.  The recurrence rate is higher than for ER+, but if you make it 5 years without one, the recurrence rate for TNBC is actually lower than than for ER+.  I know when I was first diagnosed I was consumed with all the negative, but don't go there.  Do everything you can to fight it and then have hope.  Wishing you the best and I'm sure others will chime in.

Charlene


-------------
DX 3/10 @59 ILC/TNBC
Stage 1, Grade 2, Multifocal; Lumpectomy/re-excision
SNB 0/4 nodes, BRCA-; Taxotere/Cytoxan X4, 30 rads
3/14:NED



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