Xeloda Study

Unfortunately, I did not have a PCR after neoadjuvant chemo. At time of surgery, I had a TRB of 2, T2N0M0), BRCA -.  My oncologist and I discussed the recent Xeloda study for non-PCRs, and the possibility of adjuvant Xeloda.  I know that there have been some posts about the study on this forum, and that others may be considering this and/or have started.  If you have started, have you had any luck getting your insurance company on board with covering Xeloda? 

PS - I already did Carbo/Taxol and DD A/C during neoadjuvant, so Carbo isn't an option.  

I'm so sorry to see that you are joining me in the non-pCR group.  I know that less than 1/2 of TNBC women end up with a pCR, but somehow it sure can feel a little lonely in this residual cancer group.

Oh good!  I just now got an email from the nurse.  She said not to worry, they see this often, she's not too worried yet.  I'll pop back here with an update when I know what happens with the insurance.

So for anyone following my tale, I had to kind of fight to convince my oncologist that I should continue with capecitabine.  I am RCB2, and very worried about recurrence (my lymph nodes were always clear, but I did have lymphovascular invasion).  So I was thrilled when my oncologist got onboard with this plan last week.  BUT, since the grass is always greener, I admit I have my eye on a different treatment, ha ha ha. But I have been reading about a study in metastatic TNBC women, that showed capecitabine vs. eribulin, and the eribulin was clearly more effective.  I don't have the medical background to know if there's any reason to think that metastatic TNBC cells would behave differently from not-yet-metastatic TNBC cells.  But it seems logical to me that eribulin would be better.  However, I'm probably not even going to bring this up to my oncologist because:

1.  I think the eribulin has not been tested in non-metastatic TNBC women, and so there's no "evidence" that it would work, so I really really think he would never approve it (and I guess it makes it even more unlikely that insurance would approve it), and 

2.  I better quit while I'm ahead.

But I think it's going to nag me to know that there might be a better option.  Oh well!!

Tulips

I just got the GREAT news that my insurance IS approving this medicine.  It was a hairy week--definitely extra work had to happen on the part of my doctor's office to make a case for it, which I really appreciate.

AG....glad that you are getting extra treatment in the form of cisplatin.  I think we will all feel better knowing that we are doing some version  of "more".  I'd also be curious to hear about your FoundationOne experience.  I think it's fascinating and can't hurt/might help.  My doctor is not really into it....He has used it in the past, and none of his patients ever had anything actionable come out of it.  I haven't quite gotten it out of my mind yet, though.  But one battle at a time--I really had to encourage him to get the capecitabine, so for today I'm happy!

R15, good luck with rads!  And don't be too worried about it...I barely had any skin effects, and I wasted a lot of energy being worried that I would.  Turned out to be very easy for me (obviously there's a range, but no reason to worry in advance!).  My RO wanted me to wait a month after my last day before starting capecitabine (maybe concerned about radiation recall?  or low blood counts??).

As far as recurrence rate, I think this is the million dollar question.  My oncologist ended up telling me he thinks my odds of recurrence could be just 20%, but frankly there is nothing in the literature that suggests such a sunny prognosis for my case.  I have to think he sort of sugarcoated it because he didn't really believe there's any useful additional treatment, so why get me worried unnecessarily.  Stop reading if you don't like dreary things.  I'm about to say some other numbers, but really, stop reading if you don't want to see my other thoughts.  I'm just writing some filler words here in case you don't want to see what else I have to say.  But from what I've read, I kind of believe my odds are closer to fifty percent.  I'm only 45 years old, so when I read 2 or 3 year survival rates, I'm not overly impressed.  I'd like to actually be a grandmother someday, so I'm more interested in surviving 20-50 more years! The few charts that I found that went at least 7 years in the future showed about a forty-five percent survival rate for TNBC residual cancer at 7 years, vs ninety percent survival for TNBC pCR patients.  Being RCB2, I think this overall number should be pretty representative of my situation.  Especially since I had LVI, which I don't think many node-negative people do, so I'm sure your prognosis is better than mine, so I hope I haven't scared anyone. Anyway, those odds are scary enough to me to definitely warrant additional treatment for sure.  Although I'm an optimist, and I still think I'd be in the good forty five percent ;-).  But I'm happy to see more treatments get developed for all of us TNBC ladies.  Now that I have a plan, I intend to not focus on statistics.  They were useful to me in making my decision to fight for more treatment, but now that the plan is in place, I plan to put on my rose-colored glasses again ;-).

I was diagnosed November 2015 with idc tnbc, ki67-90%. 1.8cm. I'm 61 years old.

I had 4 AC and 12 taxol treatments which were completed in May,2016. I chose bilateral mastectomy with sentinel node in July  . There was no lymph node involvement but pathology showed residual disease (*which was removed with the BLM). Rad Onco says I don't need Radiation(yay). But my MO wants me to start Xeloda to improve my chances of not having it reoccur.  I don't know what to do.  It is supposed to decrease re-occurance by 5%.  Do that justify 6 months of who knows what side effects?  

GlorL,  I am about to start my 8th and final round of Xeloda, and have in fact sailed through with barely any side effects.  If your MO recommends this, I think it makes sense to try it and see how you fare.  If you end up suffering too much, you can always stop like R152410.  (Although, I admit, I am nervous about my lack of side effects--I read that women who experience hand/foot syndrome have a more effective response to Xeloda vs. those that don't).  R152410, what side effects were the worst for you?  Also, R152410, I'd love to hear about the vaccine trial you are on.  I'm glad to hear you were eligible even after trying Xeloda.  Where is it based?  Do you have to travel?  Any other details would be appreciated!  I am not sure I'm ready to be "done" with treatment, very curious about additional options.  I really, really, really don't want this to come back!!!

Good luck to all!!  Fingers crossed for everyone!!

Tulips

Good luck with the path you decide to take!  I'm sending good thoughts your way!