First of all, I am SO appreciative of this supportive community, and hope for the best for all of you.  I have been reading posts for a while, but haven't chimed in yet.  

I was diagnosed in April, with a 2.2 cm tumor.  I did neoadjuvant chemo--12 weeks of Taxol, plus 4 treatments of AC, plus I was in a trial that added Carboplatin (for sure) and Veliparib (possibly) during the Taxol phase.  I am BRCA negative.

I did not get a pCR (although my MRI after the Taxol implied I would….so it was very disappointing at surgery time to find out that I hadn't).  I had a lumpectomy and SNB in November, and had an 8mm tumor left, and clean nodes.  That puts me in the Residual Cancer Burden index as RCB2.  I had lymphovascular invasion present, which I read is comparable for survival to having a few nodes affected, and upsizing your tumor a stage.

I'm scheduled to start radiation in 2 weeks.  My oncologist does not plan for me to do any additional adjuvant chemo at this point, but I am very nervous not to.  It seems to me that the prognosis for people with this type of residual cancer is really not great at all.  I would like to throw the kitchen sink at it, and chemo wasn't really that difficult for me.  Has anyone been in this boat, or knows of others, and if so:

*  Did they do additional chemo or anything else to reduce the risk of recurrence?

*  Or are you a longer-term survivor who was in a similar situation (it would just be great to hear that).  It seems like a lot of the long term survivors had pCRs.

My oncologist did say there will be a phase 3 clinical trial for an immunotherapy treatment that he thinks makes sense for me, but that it realistically might not be ready for 12 more months.  I don't think there are any other current trials that make sense for me right now.

I'd appreciate any thoughts or input you might have!!!

Thanks,

Tulips

So glad you found this site and feel like sharing.  It is difficult for me to relate to your treatment process since mine was done opposite from yours.  I was diagnosed with a little more than 2cm ductal carcinoma in June 2006.  I was staged as IIb, grade 3, BRCA negative.  I had a mastectomy with good margins above the muscle.  I also had 3 lymph nodes removed and 1 had cancer cells present.  A week later I had 9 more nodes removed and all of those were clear of cancer.  I had 4 dose dense A/C followed by 4 dose dense taxol and gemzar.  This was a clinical trial with gemzar added as the trial drug.  I did not have radiation since I had a mastectomy and the gemzar.  That was 9 years ago.   I wonder if I'd had neoadjuvant chemo if my situation would have been like yours.  No way to know but hopefully the radiation will clean up any cells that might be left for you. 

Good luck and I will be praying that the correct decision is made for you.  To be honest; no matter how the treatment regimen goes we can be left with questions for years.   My largest fear was not having radiation, but I assume the gemzar made a difference for me.

 

God Bless,

Lillie

It was really helpful to hear your input.  And very reassuring to hear of somewhat comparable cases to mine, thanks!!

I am going back to my MO right before Christmas, and will have a "final" treatment plan discussion.  He is in San Antonio right now.  

There is one presentation in San Antonio that is of high relevance for my case, a report from a Phase 3 study out of Japan that tried Xeloda (Capecitabine) in women with HER2 negative disease that had residual cancer after neoadjuvant chemo.  I'm assuming that if they report promising results, my MO would be more on board with trying Xeloda.  I think I gathered from him that to date, the studies have not shown proven benefit from adjuvant chemo in cases like mine, and they add toxicity, so he is not in favor of more chemo.  I just can't help but want to do more, more, more, even if there is no evidence of success ;-).  Gordon, can I ask what adjuvant chemo your wife tried?

I am at a great teaching hospital, and I trust my MO completely.  He is completely up-to-date on research (and has been a lead investigator in an oft-cited Carboplatin study for TNBC, as well as a participating investigator in other trials), but I guess if he still doesn't want to add anything else, I may look into 2nd opinions.  I had gone to Dana Farber for a 2nd opinion in the beginning, but they were proposing exactly the same treatment, so it served more as a reassurance, but there was no reason for me to take on the longer drive at that point.

I have been curious about the copper depletion medicine (T.M.).  It looks like Phase 1 & 2 were sooooo promising for preventing recurrence, and Dr. Linda Vahdat wanted to go ahead with Phase 3 immediately, but now the Swedish company (Wilson Therapeutics) that owns the medicine is focusing their efforts on using T.M. against other diseases, and won't sublicense it!?!?.  So it is stalled in terms of TNBC research, from what I can gather in the news.  My MO is pretty straight-laced, so I doubt he would prescribe that for me off-label without more conclusive research.  My guess is that the Dana Farber people would be the same.  Does anyone have thoughts on that?

Anyway, I really appreciate all of the thoughts!  If in the end, it makes sense for me to just do radiation and hope for the best, I'm making it my New Year's Resolution to try hard to be at peace with that and assume the best will happen.  No benefit in excessive worry.

Thanks again!

Tulips

If your MO is recommending radiation, then it is a part of your standard treatment and you should do it.  

About adding more chemo / other treatments, it really is a personal discussion with your MO and with a good 2nd Opinion doctor that can do a complete review of your case.  But, at this stage, another opinion is good. 

At the SABCS 2015, there is a lot of discussion, and who knows what doctors may be willing to try to help you. 

The study which you refer to (Phase 3 study out of Japan that tried Xeloda (Capecitabine) in women with HER2 negative disease that had residual cancer after neoadjuvant chemo) - phase III CREATE-X clinical trial  

The doctor that ran this trial is a top doctor at one of the finest institutions in Japan, Kyoto University - Masakazu Toi, MD, PhD, from Kyoto University Hospital. 

http://www.aacr.org/Newsroom/Pages/News-Release-Detail.aspx?ItemID=803#.VmjQQrh97cs

http://www.med.kyoto-u.ac.jp/en/organization-staff/research/doctoral_course/r-047/

Wishing you well.  

Look after yourself.  

Desh

Tulip,

Here's a link to what was discussed at SABCS.

It is so reassuring to hear you are doing so well on Xeloda, I am so happy for you!

I saw my MO yesterday and thought I was going to walk out closer to making a decision on Xeloda, but no, haha.  She is recommending it, saying that my 5 year DFS is only between 75 to 80%, and since there is NOTHING else for us that why not give it a try.  My doctor acknowledges that there are several uncertainties with the study, e.g. the fact that Asian women tolerate Xeloda much better than e.g. Caucasian women, plus they might process it differently making it more effective for them.  In other words even though she recommends doing it, she can not say with certainty that it will work for me.  She is only basing her recommendation on the fact that there is nothing else out there.  I do get the rational of doing it, just not sure I personally want to put myself through more toxicity and not be sure it is working.

Also wanted to share a new trial for those of you who are BRCA positive, which the MO at Dana recommended.  Being BRCA negative I don't qualify, but would consider it if I was.  It uses PARP inhibitors which my researcher neighbor has been talking to me about ever since I was diagnosed, and she thinks looks very promising.  Here is the link to the trials which starts in April, https://clinicaltrials.gov/ct2/show/study/NCT02032823.

Keep on going guys :)

Ima

ps. Tulips I watched the TNBC talk you mentioned, and it was very helpful, thanks for posting!

First let me say thank you for sharing your stories here, they are very helpful to me! I thought I'd share my experience so far with taking Xeloda as prophylactic chemo post-treatment. 

Bethie--Good luck today, and please let us know how it goes!

Warrior31--So sorry you are going through this, too. And it looks like you were taking Xeloda/capecitabine at the same time you did rads--OUCH.  I hope you heal quickly.  A 3 mm residual tumor sounds pretty small (mine was 8 mm), so I would certainly hope that bodes very well for your prognosis!  But I understand the desire to be aggressive in treating this, especially given your young age (I'm 45, and still feel relatively young!  But am pretty sure this TNBC business is tough for all of us, whether we are 20 or 100).

Donna, I can't tell you how much I appreciate all of your posts!  You are definitely an inspiration.  Your posts are so encouraging always!  All of the research you post is incredibly helpful.  Thanks so much for all you do for us TNBC-ers.

ImaJ, thanks SO much for sharing all of that!  

It's so great to hear more perspectives from the DF folks!  It does seem to be more evidence that there really could be a good case made for either decision at this point!

I had seen some the older studies that slightly contradicted the CREATE-X study, but to me, they weren't as convincing because they were not nearly as specific to my situation as CREATE-X (i.e. I didn't find any that specifically looked at TNBC patients who had residual cancer after neoadjuvant, and tested capecitabine as adjuvant treatment.  As far as I can find, CREATE-X is the only study that looked at this exactly).  So those studies that they refer to that didn't show benefit are not quite as irrelevant as apples vs. oranges, but maybe sort of like comparing green apples vs. red apples. ;-).  whereas CREATE-x is sort of red apples vs red apples for my situation.

As far as the pharmacogenomic possibilities of Asian women metabolizing capecitabine differently, I wish I knew!  But there is lots of evidence in the metastatic TNBC world that capecitabine is an effective treatment for western & caucasian women, bringing a decent percentage of women to NED and/or stable disease for long periods of time, so it just makes sense to me to think that capecitabine can be effective for NON-metastatic western TNBC women, too.  

I am started on a dose that is similar to the CREATE-X dose (a little lower--I'm on 2000 mg/m squared daily vs. 2500 in the study).  Also, in reading the study carefully, it's clear that a very large chunk of the women either did sizable dose reductions and/or dropped the last few cycles, and they STILL saw the 42% benefit.  So I'm hopeful I can make all 8 cycles, and perhaps the benefit would be even higher (I wonder if they reported on just the women who finished the full recommended doses if the results would be higher for that group?  Seems very possible).  Here's the info on the completion rates from the study:

"Across all patients in the study, 58% of the 159 who planned to receive 6 cycles of capecitabine completed therapy. In this group, there were dose reductions for 38 patients and 18.2% of patients discontinued therapy, for a relative dose intensity of 21.6%. In the 8-cycle arm, 37.9% of 280 patients completed therapy. Overall, 37.1% and 25% of patients underwent a dose reduction or discontinued treatment, respectively. The relative dose intensity was 29%." 

Knowing that they still saw 42% risk reduction even with all of those dose reductions gives me comfort that if I end up having trouble, it may be okay to reduce or quit and that there STILL could be benefit.  So my Plan A is to sail through all 8 cycles with no side effects and no dose reductions.  But my Plan B is to allow dose reductions if needed ;-)

One of the other things I've struggled with is determining my prognosis.  My MO has told me I should expect about an 80% survival rate, but I simply can't find anything remotely as encouraging in any studies, when I look up RCB2 TNBC.  I am reluctant to write this, but unfortunately, I find numbers in the studies that are quite a bit lower than that (especially when looking at longer term studies (7-10 years)….I wonder if he means 80% at 2 years, ha ha ha, but I am interested in living past age 47!).  I am so sorry to write that, and I hope you've come across better numbers than I have for RCB2 TNBC.  Plus, our oncologists could be incorporating other more personal information (i.e., what they see about our general health, our lifestyles, other factors that are more specific to us as individuals).  So hopefully they are right with their sunnier prognoses!   But I know mine was double-counting at least a little bit.  For example, he kept emphasizing to me that although I was RCB2, I was really, really close to being RCB1.  And then he would emphasize that I was node-negative, as if that was a different point.  BUT, of course the RCB calculation already factors in lymph node status, so counting that as a separate good indicator is double-counting (in other words, if I was node-positive with the amount of residual tumor I had, I would probably be near-RCB3).  I think the RCB status is probably the most accurate thing to go by, since it incorporates all of the major prognostic factors. It seems to be more robust than simply considering node status, since it incorporates node status PLUS size of residual tumor PLUS percent cellularity, etc. (It would be great if CREATE-X investigators would eventually cut the data by RCB level).  Anyway, I'm just not sure I fully believe my MO's numbers for me.  I certainly do NOT mean to be scaring anybody here, and of course everyone should listen to their own oncologists, not me!!  I don't mean for you to doubt yours---I am sure your MO has incorporated all of your very personal information and factors to come up with her 75-80% numbers for you.  I'm just sharing my worries about my prognosis to better explain my own decision process.  In the end, stats are a little useless at the individual level anyway--I'm sure we will 100% be here in 30 years!

For sure, there seems to be no right or wrong answers here….lots of different opinions even among top oncologists.  I spoke with Dr. Traina one-on-one after the panel discussion briefly, and explained that I was RCB2 node-negative, and had the very strong impression that if I was her patient at MSK, she'd recommend capecitabine (of course, she couldn't literally give medical advice in that setting, but it seemed pretty clear from what she said), although she acknowledged that there are mixed opinions out there because it is just one study.

Wow, do I wish additional studies could come out tomorrow!  It's so hard making decisions with less-than-perfect data.  

Thank you again for continuing with all of this decision-making with me!  I know I'm way too wordy, but I find all of this very therapeutic ;-)  The extra viewpoints you shared from DF are really helpful--and I'm sure also helpful to anyone else who looks at this thread in the future.  Good luck with your decision!!!!!!  Seems like you can't go wrong.  I bet that our neoadjuvant chemo already zapped any rogue cells we might have had anyway! And maybe we never even had rogue cells!

Tulips