A new triple negative friend

Christina,

thank you so much for the information. My tumor is right about the twelve o'clock position. My onc is nervous that it is too close to the nipple. I will be talking to my surgeon on the 29th and probably set the date for surgery at that time. My onc doesn't think it is in the muscle but then how do they know for sure until they get in there and take the tumor out? They will make sure they have clear margins before they sew me back up. That at least will save me one additional surgery. I have made up my mind in the fact that if the surgeon can not get clear margins without taking the breast then she has the go ahead to take it, then my concern would be should she just take the other one at that time as well. So many questions, no right or wrong choice, that is what makes it so hard.

Take care and good luck, Penny

Meggy

I also got treated at Stanford and got Neo Adjuvant first and had been advised by the Tumor board. I had to have chemo after surgery as well. I will send you my phone number in a provate message - and you can call me for more info.

Lali  

In response to triple negative.  I was diagnosed 8/23/07 with bc.  I to have braca 1 breast cancer gene.  In 9/07 I had biopsy of lymph nodes they were negative.  I had a bilat masectomy 8/15/07.  my tumor was stage 1.  I started chemo on 11/30/07.  At first my treatment was going to be AC 4 treatment and 4 treatment of taxol.  Two day later my dr called and said they changed my treatment and said I would have only 4 treatment 4 of taxotere with cytoxal.  Tomorrow 2/1/08 will be my last treatment.  I will have 25 treatment of radiation.  Good luck to everyone with triple negative we will survive this bc. 

Good luck to you Penny.  I'm almost one year ahead of you as I was diagnosed January 2007.  I went through neoadjuvant chemo too, then bilateral mastectomy (immediate recon), then more surgery, chemo and radiation.  Finished up Jan 9th, 2008.  Get that thing out of you and move on to the next phase of treatment... you go girl!  Good luck to you.

t

Thanks Christina and a hopeful congratulations to you on the final SNB pathology.  A word of caution though, on the exercising front.  Take it very easy as the incisions settle down and heal.  I think it's great that you're feeling so good, so soon after surgery and I'd hate to hear that you've overdone it too soon after surgery.  Let us know how you're making out.

t

Thanks for the awesome page on exercises.

My surgery was the beginning of May 07,  I use the arm as normal but doing exercises like these should help.

When you first start do keep it simple.  Another one my surgeon suggested it take a towel and put it over a door.  pull up with the good arm while resisting a little on the surgery side.  Then pull down with the surgery side.  Also walking your hands up the wall like a spider is a good one.

I have some swelling in my had that started with Taxotere and has not gone away.  It doesnt bother me but I do message it alot.  I learned how from a physical therapist.  Good luck to you.

My original diagnosis in April 07 was ER+, PR and HER2 neg.  I went through Cytoxin Taxotere.  Had my mastectomy (left side only) before chemo.  I had clean margins, they took 11 nodes, only the one that showed on my mamogram was positive.  I finished chemo August 10, 07.   In mid October I found a lump on the left side, same side as mamogram with clean margins, same basic position only this time was in the muscle.  I switched docs and had a PET scan.  I found that I am triple negative. My ER was so low on the positive side that the docs at cancer board determined I should be negative. I now have mets to my liver and lungs. The new onc put me on Epirubicin, 5FU and cytoxin.  Had 2 cycles and then CT scan showed shrinkage of the lungs no change to the liver then after 2 more cycles I had another CT scan.  Lung mets had stayed the same but the liver mets were growing.  I switched meds and started today with avastin, Carboplatin, and Gemcitabine.  I'm feeling ok right now but we will see how I feel tomorrow.  I will have the Gemcitabine again in 8 days and all 3 every 3 weeks.  Kinda confusing schedule but I'll manage. 

I'm a fighter.  I'm only 38 and have a grandbaby (girl) that is due the beginning of April.  I cant wait to spoil her, so I have to keep fighting.

Hope my story helps,

I have a blog at www.ocinny414.spaces.live.com if you are interested in reading my story.  You might have to google my name for some reason the link doesnt work.

Good luck to you all,

CindyKS

Hi Wink,

Nice of you to join us (even though it's a lousy club to be a member of).  I was diagnosed a little over one month before you and I finally finished all treatment January 9th, 2008.  I had a bilateral mastectomy last June, with immediate reconstruction.  I also did DD AC and DD Taxotere (February through May) and Carboplatin (August through October), capped off with radiation November through January.  It's been a long year and I'm glad it's behind me.  You're right the decision making is trying, the uncertainty about doing the right thing is so difficult.  As for AC, I think the A is being replaced selectively with T.  A little too late for me though.  AC didn't do much for me at the time (AC and T were neoadjuvant for me) but Taxotere almost eliminated the tumor (from 3.5 cm to 2 mm).  The carbo after surgery was for insurance purposes.  I hope it pays off.  I'm with you, some days I barely think about BC and other days I obsess.  Time will help I believe. 

t

Good morning Wink,

Yes, it's my understanding that A is often now being replaced with a Taxane, so TC instead of AC, followed by T.  In my case, my second opinion resulted in adjuvant Carboplatin, in addition to the neoadjuvant AC and T.  I was happy with that recommendation although it was largely at my insistence, since the onc said we are in 'uncharted territory here' (no study data to support this approach).  I'm glad she ended up supporting the additional chemo.  My local onc said no need for anything more, even though nodes turned up positive after the neoadjuvant chemo.  My energy levels are pretty good although I haven't been doing much besides working, eating and sleeping.  All in all, not that taxing. 

That lost feeling seems to be a common one for TNBC patients. Our sisters have hormonal therapies available to them while we often feel exposed and inactive in the ongoing fight.  I'm focusing on diet and preparing to get going seriously on exercising... that's all I can do at this point.  I hope things work out for you with MDA.  I used Johns Hopkins also in my search for more opinions on pathology and treatment, often felt like I was grasping at straws.  In the end, it's good to know you've done all that could be done, knowing what you know at the time.  There should be no looking back with this disease,  we do what we can.  The rest is a crap shoot.

My follow-up care pretty well follows the ASCO guidelines.  Regular appointments (every 3-4 months), full history and physical workup, bloodwork but no scans.  I discussed this with my onc and she said she was flexible on that point so I asked for at least an annual PET/CT.  She agreed. My BS wants a regular MRI for the chest wall (can't recall if I mentioned that I've had a bilateral mastectomy with immediate recon/silicone implants/Alloderm).  In any case, a PET/CT and MRI once a year, six months apart and bloodwork every 3-4 months is enough for me.  If there was only some way of knowing whether there are any stray cancer cells lurking around waiting to set up camp... Oh well, I'm working on not worrying too much.  I tell myself that I could ruin every remaining day of my life with worry or I can enjoy each day and live while I can.  Easier said than done some days, but I'm practicing.

Hugs,

t

Twink,

You said that "TC followed by T"  Taxotere and Cytoxin?  followed by what? 

I am so confused about this whole "T" thing.  I was told that Taxol and Taxotere are basically the same drug.  I will be taking Taxol.  If Taxotere is better why are doctors not using only it?  I hate this whole thing!

Teresa

Hello wvgirl,

How far are you into your treatment?  Hope you are seeing positive results doing NeoAdjuvant therapy.

Wink

Wink and Christine,

thanks for the info on taxol/taxotere.  I just have so much going through my mind.  I will have my 3rd A/C treatment tomorrow.  I constantly wonder if I should be doing carboplatin but my dr thinks this is a good treatment.  4 A/C every two weeks then 12 taxols weekly.  The reason I'm doing taxol is because of the trial I'm on.  I am taking Avastin too.  At least I think I am.  Its a blind study.  I find out at the end.  I had 3/20 positive nodes and I think I should have radiation too but dr doesn't so I'm going to get a second opinion with a radiation oncologist.  I just want to do everything I can.  I don't know what my chance of reoccurrance is but I suspect its high....not really sure.  I'm just having one of those nights that I'm so scared and I can't stop the tears.  Usually I'm ok but every now and again.....I'm sure you guys understand.

Teresa

Hello,

I was wondering if any of you stage III(a-c) triple negs. would mind sharing what treatments you had or are having.  I'm just trying to gather information for myself. Thank you to anyone who responds.

Wink

Dear wvgirl,

   I am happy to hear that you are feeling pretty good so far.  I will be thinking of you this Friday as you go in for #3.  I'm glad you are still able to work.  I was lucky and was not working during treatment except to sub on days I wanted to.  It was nice to get out of the house though, made me feel better in many ways.

   Let us know what your onc says about the MRI on Wed.  It's wonderful that you think the lump is smaller!  I will keep you in my prayers! Keep us informed.

Hugs to you as you travel this path, 

Wink