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

My wife too had a residual of 6mm post Taxol x 12 and FEC x 4.  (Initial tumor was also 2.0cm on Ultrasound and 2.2cm on MRI, no lymph node mets seen at dx). 

My wife too, like yourself, has NO BRCA mutation ( was tested twice by different companies to confirm this). My wife was also tested for BRCAness, but did not have any gene repair issues in the post residual tumor samples submitted. (for patients that do not have a BRCA mutation, but exhibit BRCAness, platinum therapy may be recommended). 

Her surgery was a LX and she had micromets in 4 nodes, so 17 were removed.

Her RCB was also a RCBII.  So the same as yours.  No lymhovascular invasion.  

We followed up with 25x wide range radiation, as that is standard therapy post surgery, and then requested to have 4 cycles of Carboplatin after completion of standard therapy, outside of insurance and not in a clinical trial.  

So that is our case. No further treatments thereafter.  

It seems that you had a lot of therapy. I do feel that getting a second opinion at this stage may have some merit.  There are hospitals that may want to further test your tumor characteristics / profile and put you on another trial.  It may make sense to get a 2nd Opinion at MD Andersen, Sloan Kettering, at Dana Farber in Boston, or with another tnbc specialized doctor (with your complete treatment history).  

Just because the RCB Score says 2 does not mean it is all bad.  You did respond to therapy, but like us, you did not have a complete response.  a CR isn't everything.  A lot depends on the tumor characteristics, the type of TNBC, etc, so simply relying on CR is probably not the entire story, and you can do very well.  The problem with TNBC is that there is a lot of unknown still, and the disease is not one disease and the response to tnbc may vary depending on the varied profile, while treatments is still rather standardized.  

But you ought to get a 2nd or 3rd opinion to ensure that you've done everything that you can.   There may still be options for you to consider.

Wishing you well.

You could reach out to Steve. 

Steve will be at the San Antonio Breast Cancer Conference from Dec 8 to Dec 12 and I believe in between he is taking one of his patients to John Hopkins (an emergency case).  So he is busy but he always reaches out. 

If you haven't already, you will need to sign a waiver for him to introduce you to doctors (he is well connected).  He does not give medical advise, but he has a ton of knowledge and he is well networked in the field.

He is a wonderful human being. 

Best,

Desh

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  http://www.jbcrg.jp/en/clinicaltrials/detail.php?id=5" rel="nofollow - 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

And great to see the promising results released today about the Xeloda/Capecitabine trial! i wish the results of the Triple Negatives vs. the hormone positive patients were available already, but I guess they are working on it.  Thanks SO much for sending the links!  Great to see Dr. Toi's excellent background.  Now I see that you are based in Japan!  So you must be familiar with him.

Can't wait to discuss this with my MO in 2 weeks.  I'll post an update.

Tulips

Tulip,

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

http://www.medpagetoday.com/MeetingCoverage/SABCS/55163" rel="nofollow - http://www.medpagetoday.com/MeetingCoverage/SABCS/55163

A small % of patients (less than 10%) are missing a certain enzyme, and have immediate bad side effects.  Luckily, that did not happen.  My fingers are crossed that I get through the next 24 weeks without too much in the way of side effects.  I can tell that doing this additional treatment does make me feel much better mentally--really happy to have another tool to ward off recurrence.  Feeling grateful!

I'm on my 4th day of capecitabine, and no side effects yet (fingers crossed).

As far as how we ended up deciding on capecitabine, here's the story:

1.  Our first stop was going to be a clinical trial, but there didn't seem to be any appealing clinical trials that I would qualify for that are open right now (that may not be true for everyone….for example, I already had carboplatin during my neoadjuvant chemo (NAC) treatment.  I believe there are trials testing carboplatin and/or cisplatin as an adjuvant treatment for residual TNBC.  I obviously don't qualify, but someone else might.  So obviously, everyone should search the trials themselves).  My MO sees some upcoming immunotherapy trials that would be appealing, but they aren't ready (perhaps another 12 months before they realistically start).

2.  It appears that there is no other chemo that has been tested specifically on residual TNBC after NAC and proven to be effective (there have been a decent number of trials, but my understanding is that they've turned out to be pretty disappointing).  Personally, I'd be willing to try almost any chemo that I haven't tried yet (gemcitabine, eribulin, etc), but without a clear study to point to, my MO would never approve that.  I think the copper depletion trials look exciting, but the phase 3 isn't ready yet.  

3.  The capecitabine CREATE-X study that revealed its results in December 2015 in San Antonio seems to be the one filled with the most evidence in support of additional adjuvant treatment after residual cancer found after NAC.  There was a 42% reduction in risk for the TNBC patients who did 8 rounds of capecitabine/Xeloda after NAC and surgery (and radiation if appropriate).  However, the results were somewhat surprising, and everyone would LOVE to see another study confirm the results.  This will take years and years, of course.

My MO was a little reluctant to go forward based on just this one study, but I really pushed, and he called around to a lot of colleagues to discuss.  In the end, he's onboard.  I personally felt even more great about our plan when I went to the TNBC conference in NYC 2 weeks ago.  Dr. Tiffany Traina (a TNBC expert from Memorial Sloan Kettering) was the MO panelist, and she seemed quite encouraging of using capecitabine in this situation, and brought up the CREATE-X study several times as providing an exciting option for residual cancer (the webcast of that presentation can be found if you google "Living Beyond Breast Cancer" and "Tiffany Traina".).  I was already confident in our plan, but it was still nice to hear that she thinks it's a good idea (my interpretation….of course she said everyone should talk about those results with their own doctors).

4.  Although I would have been happy to go on any chemo that has evidence of effectiveness, I am thrilled that capecitabine seems extremely tolerable.  In particular, I'm overjoyed that I will not lose my hair again!  The most common side effect seems to be hand/foot syndrome, but the effects can range from mild to terrible, and I'm optimistic.  There are other potential side effects, of course, but they don't seem that common or that extreme.  I figure if I DO get terrible side effects, I can either do a dose reduction or stop the medicine altogether.  It doesn't seem like I'll be miserable over the next 6 months.

5.  Certainly many MOs would suggest watchful waiting (which was also my MO's initial recommendation).  The odds are still in our favor, so that is not necessarily a bad option at all.  I think the desire to do more is a very personal one.  I was not comfortable with my situation, but I don't want to scare anyone else into thinking that more treatment is necessary if they are comfortable stopping.  All of our circumstances and personalities are different!  Some of the benefits that I think I'll get from this treatment are mental--I think I'll just feel better doing more.  Someone else might be more concerned about the harm from the toxic chemicals and feel better doing less.

However, there may be better clinical trial options for other people.  Please don't consider me an expert--these are just my observations from the research I've done--I could have missed some better options perhaps!  I'd still love to hear examples of what other people are doing in cases of residual TNBC.  Please post here, if you don't mind, after your discussion, and let us know what treatment options your MO suggests.

Also, I did have a little initial trouble with my insurance (they rejected the initial authorization of capecitabine, because this study is new and not a lot of people have been prescribing it in these cases yet).  However, my doctor did a little extra work and got it approved.  But that was enlightening to me…I realize now you can't just prescribe any chemo without evidence of effectiveness and expect it to be paid for ;-).

I hope this helps!  Good luck on Tuesday, and let us know how it goes.

Tulips

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

Great job in doing such a thorough job researching and deciding what is best for you!  Oncs are sometimes reluctant to change standard of care practices if there are not proven clinical studies and research.  

Donna

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!

I'll let y'all know how it goes. 

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. 

I don't have much time now, so I'll respond more later, but wanted to respond to the dosing question before you see your MO Bethie (hello to Warrior!).

I believe the CREATE-X study had the women receive 2500 mg/m squared each day (1250 in the morning, 1250 in the evening).  This is based on your own surface area (computed by height and weight---thus " per meters squared").  

My MO suggested we start at a slightly lower dose, 2000 mg/m squared.  For me, I guess I am 1.7 meters squared, so I get 2000 x 1.7= 3400 mg per day (1700 in the morning, 1700 in the evening).  However, my pills come as 500 mg each, so I have a funky schedule (Day 1:  4 pills in am, 3 pills in pm.  Day 2:  3 pills in am, 3 pills in pm.  Repeat).  So every 2 days I take 13 pills.  13 pills =6500 mg.  Divide by 2= 3250 mg per day.  Close to 3400.  I don't think I was exactly 1.7, might have been more like 1.67 or something like that, so this works out about right.  Gosh, this sounds confusing, but really it's not.  I'm just going into explaining this so that when you read about people's doses, you need to be careful to see if they are talking about their dose per meter squared, or their own personal absolute number of mgs based on their surface area.  I hope this makes some sense and is helpful!!

I am also on the 2 weeks on, 1 week off schedule.

Tulips

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

Sorry to hear about the adrenal problems!  I hope your blood pressure is back where it should be, and that they figure out how to help you asap.  Sounds like Mainsail has some great advice.  Also sorry you got stuck with some residual, too, although of course we'll all be fine.  Are you done with treatment, or discussing any further treatment?  Good luck with whatever you plan!!

Tulips

I am VERY confused about which chemo to go with!!!  I would actually love a second opinion but trying to figure out who it should be with. I am in San Diego but I am willing to fly wherever to get this. I will be in NY the beginning of August to see my son and was thinking about seeing if Dr Traina might see me. If you could go to anyone any where for the top TNBC doctor, who would all of you see?

I see that all of you are using mm when referring to your tumor sizes. My report reads cm which scares the heck out of me since that makes mine much larger than all of yours. My residual tumor was 1.4cm and started at 2.5cm. I was a stage 2A. If my calculations are correct then my 1.4cm would be 14mm!!! Yikes!

I would love all of your input on my doctor choice and my chemo choice...shoot it all at me...I am ready!

Big thank you to Tulips for her communication and expertise! 

I think it sounds like it WAS a really good appointment!

First, I have to jump in about the size thing.  I feel badly about the way we've been talking about it--of course we are all comparing!  But truthfully, I don't think we can compare!  Because I'm pretty sure the relevance of the residual cancer is way more complex than just the dimensions.  Someone might have a bigger tumor left over, but the percent cellularity might be teensy-tiny (I don't totally understand this, but I think it means that within that tumor, there are only a few viable cancer cells), and someone else could have a smaller tumor with a high percentage cellularity.  Maybe there are other biological features that matter, too.  It may be important the percentage of shrinkage we had, or maybe just the overall remaining size is the more important thing, I'm not sure, but I just assume it is complex business and that none of us should be overly worried but we should be appropriately advocating for the best treatment, whatever that is.  And that's the million dollar question ;-).

I am SO thrilled they've already set up a study to compare carbo, xeloda, and no treatment in the adjuvant setting!  Wish it was started years ago, but this will be so useful to patients in the future.  And it definitely would seem that the study designers believe all 3 of these options are reasonable choices at this point.  I think all of us who are dealing with residual TNBC right now need to come back here for a reunion in 5 years to review the results!  I bet some of us are going to end up pursuing each of those 3 options, and although I know we'll ALL be here to compare notes, it will be fun to see which horse wins ;-)

As far as 2nd opinions, I think some of the famous names that come up for TNBC are Lisa Carey at UNC Chapel Hill, Tiffany Traina at MSK, and Eric Winer at Dana Farber (I'm sure there are others).  They seem to be the ones I see quoted in the press a lot.  However, I have no idea if that means they are the best.  Ultimately, I think you just want a caring oncologist who is up on the latest research (and who has time to spend with you….perhaps the most famous ones are a bit rushed???).  The problem appears to be that the research isn't crystal clear, so there probably isn't one magic answer.  I'm not sure who you should go see, but I can't wait to hear what they have to say!

One thing I would do if I were you is to comb through the studies on carboplatin, paying extra attention to the effect it had on BRCA negative women.  I'm pretty sure the results are not nearly as impressive as for BRCA+ women, but I'm not sure of to what extent--I think it's worth putting some time into really evaluating that.  That may (or may not!) help you with your decision.  

Good luck with your decision and 2nd opinion!  

And Romnessprite, happy healing and good luck with radiation!

Tulips

 

I just contacted by oncologist and it sounds like she's not interested in having me do this as I am 6 months since surgery. 

 

What do you ladies think about her response?  Should I push more?  I feel like it's never too late!  But then again I may just be reacting out of fear of recurrence. 

 

Here was her response:

 

 

 

- Mastectomy was 7/16/15

- Radiation ended on 10/16/15

 

Thanks in advance for your advice/guidance. 

 

Steph

I also had residual cancer in my remaining tumour after chemo (originally four tumours but chemo knocked out three). I was also told I'd probably have a complete response only to be disappointed by my pathology (why do they get out hopes up!!!).

I also had DCIS under the remaining tumour (previously undetected) but my surgeon said not to worry about it as she had removed tissue all the way to the chest wall and radiation would 'clean up' any remaining cells.

Although scans are no longer routine here (I'm in Australia) I asked for scans at twelve months and they picked up some calcification and the original marker clip inserted in between the tumours prior to chemo. Shock! How could my surgeon have clear margins if the clip was still in there and it had been in the centre of the tumours??? 

My surgeon decided to take another slice, saying it was probably just calcification and 'worst case scenario it's DCIS'. The pathology came back 3mm active invasive triple neg. (WHY do they get our hopes up!!!) and a mastectomy was recommended. 

At first they thought I had a mutated recurrence which, as you know, is about the worst news you can get. After the shock it occurred to me to ask for the mitotic rate and it was the same as the original tumours. This makes it highly likely that the 'recurrence' was original cancer, left behind from the original breast conserving surgery. 

My own view of all this is that it was a happy accident. Clearly the cancer that I had was highly resistant to treatment and highly likely to recur. The way events unfolded, I ended up having the best possible treatment for my condition (mastectomy) in the best possible sequence (the two prior surgeries meant my mastectomy pathology was free of cancer.)

I had my three year scans last week. I am completely free of cancer. I've done everything they told me to do; I've lost weight, taken up yoga, eat really well, rarely drink alcohol and manage my stress. I've written a blog about the entire experience here:

https://positive3neg.wordpress.com

In answer to your question about treatment I haven't had any additional chemo (and back when I was treated the carboplatin was still under trial so I wasn't offered it). I had FEC and paclitaxol followed by conserving surgery and radiation, followed by further conserving surgery, followed by mastectomy without reconstruction.

I did ask my oncologist about a platinum based chemo but she told me there's no evidence that giving it to me when I don't have active cancer will do me any good and she was concerned that, given how well I am, knocking out my immune system might actually give the cancer a leg up. (What!) She's holding the platinum chemo in reserve and will consider it if I ever get cancer again. 

As you would already know, being cancer free at my three year anniversary means my odds just got a whole lot better. 

Please know that the most important thing about statistics is that you're dealing with averages, not individuals. Included in that group are all the people that DON'T take their doctors' advice, don't improve their health and don't take responsibility for their life. Every single thing you do improves your personal odds.

The other thing I like to keep in mind is that the statistics for five year survival rates are always five years old. Research and treatment have improved dramatically in the last five years so the statistics are ALWAYS out of date. Your personal survival odds are much better than the historical figures.

Lots of us survive triple negative breast cancer. Even those of us that don't get a complete response to chemotherapy. There is no upper limit to how well you can be. 

Best of luck with it all. I hope this helps.

Meg

I was just responding to the request from Tulips about whether anyone else had been in a similar situation. She specifically asked about additional treatment,

Meg
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StephandBrandon, that's a really interesting question.  I haven't read anything that really addresses timing of adjuvant interventions.  She may be right that the odds of treatment helping at this point have gone down, or she may not be--I guess I'd want to (politely) ask her what she is basing that on.  There's no obvious logical reason to me that it would be less effective a few months later, but perhaps there have been studies showing this?  I mean, if it turns out that we do have some rogue cancer cells milling around our bodies, and if something like Xeloda (or another treatment) could have the power to kill those cells, I would think undergoing that treatment anytime before those cells have a chance to build a home and reach critical mass as metastases would be helpful.  Perhaps starting sooner might make the job easier (i.e. there would be fewer cells around to knock out).  Obviously, we are all hoping that there simply aren't any rogue cells.  I guess I just don't have any advice except to ask questions until you are comfortable.  Meanwhile, hopefully you are just getting more comfortable the further you get out away from treatment.

Just an update…I'm on Day 11 of my first round of capecitabine/xeloda, and so far, zero side effects.  My doctor prescribed only 2000 mg/m^2 vs the 2500 mg/m^2 used in the CREATE-x study.  I see him in a week; I'm sort of hoping he will up me to the 2500 since I don't feel any effects.

Also, I just read the most fascinating book ("The Death of Cancer" by Dr. Vince DaVita).  He was the head of the NCI for almost a decade, was around for the start of chemotherapies (and created the cure for Hodgkins), ran MSKCC and Yale Cancer Center.  In this book, he provides a fascinating history of cancer treatments, and really dishes on a lot of his colleagues.  He is a straight shooter, and he does not hold back on his criticism.  Fascinating insight into the politics of the war on cancer, etc.  He especially takes aim at the FDA and too much regulation for really slowing new life-saving treatments getting to patients.  I'd really recommend it!

Good luck everyone!

I have decided there is a reason I am going to be in NY and will attempt to make that consultation appointment with Dr Traina. I hope she can fit me in within my time range that I am there. I really need to make this carbo vs xeloda decision very soon!!

Thanks again everyone for the great input and Meg, loved your story...it gives so much hope. You are amazing!

Take care everyone, let's keep this topic flowing. Adjuvant therapy is something we really need to draw attention to for those of us with residual disease! 

I just get frustrated because although I love my oncologist, she's through Kaiser and she's not a breast cancer specialist.  As a result, I have to really be on top of new treatments and advocate for myself.  I'll be switching insurance on July 1 to United Health Care and have already made an appointment with another Oncologist who specializes in women under 50 diagnosed with breast cancer (I am 38).  Hopefully I am making the right decision.  Switching insurance/oncologists is super scary.

 

Thanks for the book reco!  I am going to order it from Amazon now!  Please keep us updated on your progress and any side effects that you may be experiencing!

 

Steph

 

I am sure everyone here can relate when I say, I want to do everything in my power to keep a recurrence from occurring. 

I've been following this thread for a couple of weeks now and thought I would wait until my insurance went through for the Xeloda to tell my story. I was diagnosed for stage 3A in June of 2015, I went through chemo, I had AC and Taxol. I could have went with the carbo trial but decided to go to Sloan in Baskingridge NJ and they weren't taking part in this trial, So I did protocol. I don't know about any of you but I am so sick of hearing protocol. My tumor was 4.8 cm and I also knew that I had lymph node involvement. So prior to surgery my surgeon said she couldn't feel the lymph node any more and my breast had changed she thought it was going to be very positive going into surgery.

I had a bilateral mastectomy and she removed nine lymph nodes. Pathology came back with 8 out of nine lymph nodes still infected with cancer and my residual tumor was 3.3 cm. and lymphatic invasion. I was devastated, I begged my oncologist to give me more chemo and regretted not doing the carbo trial,even though I am Braca Negative she refused said she followed protocol,and there was no more treatment for me.  I hate regrets so I looked up the trial that is coming out that is either carbo or Xeloda. At first the trial was observation or carbo and now since this recent xeloda phase 3 study they have decided to add the xeloda. I had proton radiation because I had left side breast cancer. I had 25 sessions and two boosts. So I just went to see my oncologist from Sloan last week and she said to me I was going to call you,but saw that you were coming in this week,there is a drug, I said Xeloda she laughed and said you know all about this don't you, I said Yes, just give me the prescription. So tomorrow my delivery for Xeloda will be delivered and I will start my 8 cycles, I was so happy I didn't have to wait for the trial to begin. She said Sloan is starting to give Xeloda to TNBC patients that did not receive a PCR. I didn't have any issues with the insurance covering it so I will start tomorrow and I am so excited. 

My ki-67 is 10%, I was reading that when you have a low ki-67 it is very difficult to get a PCR, has anyone else read this?

So glad things worked out so well with getting Xeloda so quickly.  Please keep posting and let us know how things are going.  I pray this will spell NED for you.  "No Evidence of Disease"....

 

God Bless,

Lillie

Luzmia-  I have to agree with Gordon, my surgeon at Kaiser was/is AMAZING!  But my oncologist is a very 'standard of care' type.  My mom, husband and I have had to tell her about new TNBC therapies, and we had to insist on carbo and constantly ask about new trials that we are finding.  But I also know that she has tons of patients all with very different cancers, so I resigned myself to the fact that she's not going to be an expert in breast cancer (much less TNBC).  At the time of my diagnosis, we wanted to move quickly, so we stayed with Kaiser, but now that my open enrollment is here, we are definitely switching to the University of Colorado Cancer Center (Breast Center).  I just feel more comfortable with an oncologist who I don't feel I have to 'teach' all the latest in treatment.  I guess I would say, Kaiser was fine for 'standard of care', but you definitely have to advocate for yourself/sister.  Gordon's right on after treatment philosophy as well, Kaiser takes a "wait and see" approach, I had to insist on a PET scan and MRI in January (mine was clear, although it is still soon after treatment).  As for Xeloda, I got in a bit of an argument with my oncologist about it today, she is going to tow her line and will not prescribe it for me.  I started crying when she told me that they don't want to waste it now in case they need it later...it was so upsetting and disappointing.   

roserosie- I just wanted to give you a little peace of mind, I know our bodies are totally different, but I am brca - and I had carbo, and it didn't do much for my tumor.  My tumor didn't grow, but it didn't shrink like it did with AC/Taxol.  I know carbo has worked for a lot of women on here, but it didn't really work for me. 

For those of you on Xeloda, please keep us updated.  I am super jealous and wish I could have it too.  :-) 

I hope this helps!  Sending everyone nothing but NED vibes!!! 

Steph 

I am sorry that you have had to fight for your care, I can certainly relate. The term my MO uses is "standard of care" and trust me, I am SICK of that term! How can a disease that is far from standard be treated in a "one size fits all" standard? I feel that in the next few years they will learn how to better identify more subtypes of TNBC and have better plan of attacks to take these on. Unfortunately for all of us, we are stuck with the standards and protocol. So glad we all have each other to help spread and educate each other and push each other to fight for the best options out there.

I have a few questions for you. Is the doctor that was saying she followed protocol the one that is now offering Xeloda? May I ask her name? I am trying to see a MO at Sloan and wondered if it was the same one.

Another question is did your MO do a enzyme blood test on you? Less than 10% of people have it but it can cause a severe reaction to Xeloda. It is important to know this before starting it.

Lastly I am unfamiliar with what Ki is. Can you explain this and let me know how to figure mine out?

My best to you!! 

Yes the doctor who kept following protocol is the one that is now offering Xeloda. I had my

surgery 0n November 21st and my follow up with her was in December. At that time

the results from this Xeloda trial were not released. My doctor is from Sloan and she is in the Baskingridge location. Dr. Gorsky is my oncologist.

I don't know if she did an enzyme blood test but I will find out. You should be able to see your ki-67 on your path report you should have a number next to it. Let me know if you can't find it. I have to run to a meeting I will follow up with this board later. 

As stated by I think Tulips, Tiffany Traina from sloan also talked about this trial, I think this is one of the reasons (sloan)they started to use this and not as a trial. 

My Best to you!! 

My oncologist is at Swedish in Seattle, and she is prescribing Xeloda for me as a result of the recent study. (I had a fair amount of residual after neoadjuvant and my Ki-67 score did not decrease). However, she may not recommend it for someone with less than 1 cm (based on another's experience).  

Romnessprite/Ginie, I'm sorry to hear about your daughter.  This is so hard for the kids, but of course when our kids are having a hard time, it's hard on us, too!  My fingers are crossed that she starts to feel better about it soon and is back to her old self.  Of course, remembering my teenaged years, I might have stayed out until 1 or 2 in the morning, with my mom perfectly healthy ;-).  So some of it may just be teenager-iness!

I'm wondering a little about dosage, for those of you who have started or about to start Xeloda.  Scanning through this now-long-thread, it seems that it's me, Warrior31 and RoseRosie, am I missing anyone?  I'm taking 3250 mg total every day (split into 2 doses: am/pm).  This is based on 2000 mg per meter squared (based on my height & weight, my surface area is around 1.64 square meters).  The CREATE-X study started the women at 2500 mg per meter squared, although many had dose reductions.  Just curious if your MOs have you on the 2500?  I'd like to really zap this, so I'm getting concerned/curious about the lower dose, wondering if I should request an increase.  I know that many of the women with metastatic BC are on much lower doses of Xeloda, and the ones that are successful stay stable or reduce their tumors on those lower doses, but in the adjuvant setting we aren't trying to keep the cancer at bay--we want to eradicate it!  Warrior, I know you said you are taking 1500 mg twice a day, but without knowing your height/weight, I'm not sure if that is the full 2500 mg/meter squared that was used in the study? Anyway, good luck to you both!

Steph, sorry you weren't happy about your appointment.  I think it's important to remember that the jury is still out on Xeloda, so you may not be missing out on anything except toxicity!  Hopefully we just don't have any rogue cells at all.  However, I will say, I'm not big into the save-it-for-later school of thought.  If something can help us now, it could possibly cure us.  If we save it for later when we have a metastatic recurrence, then it can no longer cure us, just probably give us a few more months.  I think this is a very personal risk assessment, and we might all view it differently.  But I can't remember your situation exactly, you might have had very little residual and your MO probably has reasons to think you don't need to try this.  The odds are still in our favor no matter what.

Mainsail:  I like your Steve Jobs approach!

By the way, Bethie, my MO mentioned the enzyme to me, and said that if I had it, I'd have a fairly immediate reaction and we'd have to do a big dose reduction or address that, but he did not offer a test.  He did say it's pretty rare (I think he said around 5%) So I was a little nervous before my first dose.  Sounds like a pre-test is a good idea!

Luzmia, I think it's really interesting about screening after treatment.  According to ASCO, it is now normal/recommended to only do scans when there are symptoms, because they say finding a recurrence earlier doesn't help with survival.  I just have such a hard time believing this.  If it's totally true, then I agree, I'd rather have a few extra months of blissful ignorance (and less radiation), but there is a part of me that just thinks it's logical that if you catch the metastatic recurrence while there's a smaller tumor load, whatever treatments you use would be able to keep it at bay longer.  Apparently, the studies haven't shown that to be true, but I can't help being skeptical.  Wonder if everyone else believes that?  And I think it's Donna that had an amazing experience of catching a recurrence to a node through a scan in the nick of time to have gotten rid of it.  I'm going to abide by the no-scan policy at my hospital and not make a fuss about it (for now at least), but I have my doubts...

Hello to everyone else.  I send good wishes every day to everyone dealing with sickness, but extra wishes to those with TNBC, and extra-extra wishes to those with residual (and extra-extra-extra to those with mets).  I really feel connected to all of you, without having met a single one of you!

Tulips

Romnessprite1 you just had surgery, I was the most depressed and thought it was the most difficult time for me I would say the first month from surgery. Your body has been through hell. We go through chemo and then don't really mentally prepare ourselves for surgery because we just go through the cycles and then I think it all catches up. You need to heal, have your radiation and hopefully find a dr. that will give you Xeloda. My thoughts are with you and I'm sending healing energy your way!!

I know my oncologist said that the dosage goes by your weight. My weight is 133lbs. and I am 5.4", I am taking 4 pills of 500mg each in the a.m. and 4 pills 500mg in the evening so my dosage is 4000 mg a day. I haven't had any issues, I don't feel any different so no side effects. Seems like I'm on the highest dosage compared to everyone else, Have you experienced any side effects.

Rose

That helps!  I think it sounds like you are on the full 2500 mg/sq meter that was used in the CREATE-X study (below is a link to a dosage calculator).  I'm going to ask my MO about going up to that level when I see him next week.  I just finished my first 2-week round and had absolutely zero side effects (yikes!  I don't want to jinx myself by typing that!).  I have been using all sort of creams and lotions on my hand and feet to prevent hand-foot-syndrome, but I don't think it's been necessary (now they just feel fabulously soft).  Zero stomach issues, zero fatigue, etc.  I'm similar in size to you (about 128 lbs and 5'8), so I think I should be on a similar dose to yours.  Thanks for the info.  

Tulips

http://www.globalrph.com/bsa2.cgi

Are you taking vitamin D?

Yes, I'm taking Vitamin D, but really just because of the ladies on this website (thanks, all!).  My oncologist never once mentioned it or had me tested.  I've added it to my lab slips though ;-) and so I know I'm on the lower side.  I take D3 5000 mg but haven't had it tested in a while so I don't know my current levels.  I also am conscious to get more sunshine on my skin and use less sunblock (after a lifetime of avoiding the sun & gobbing on the block).

Rose and Warrior, thanks for answering my dosing question.  Warrior, you make me feel better about my dosage, and I think I won't bring up raising my dosage when I see my MO tomorrow.  I'll go through cycle #2 and see how I fare.  I understand that  for some people, side effects start showing up in the 2nd cycle, so maybe if I breeze through that, I'll ask.  I just think if I had the prescription for more, I could decide on my own whether I take the extra pill or 2 per day.  Basically, I'd like to be my own oncologist ;-).  I bet my oncologist wishes I was my own oncologist, too, sometimes!

I hope you are healed from the radiation by now.  I'm sorry it was so difficult for you, but I think people usually heal up fairly quickly, and it really does seem convincingly effective at helping us.  My fingers crossed you are past the worst of it!

Romnesprite, I'm sending positive thoughts your way.  It sounds like a tough week.  And in terms of the Xeloda, I think there are 2 reasonable ways to think about it:  if you are fine with not pursuing it, that is totally reasonable--the data is a little confusing and even among all of these brilliant oncologists there seems to be confusion/disagreement about what to do with this.  But if you are going to look for another opinion on it, you may be successful…it seems like just in the past month or so, as more oncologists discuss the results, there may be some change of opinion in favor of using it for adjuvant therapy.  So if you feel strongly about it, I wouldn't drop it as a hopeless request.  But clearly no one is perfectly satisfied that there is enough data to 100% support its use.  I personally think there is no right/wrong call here.

Good luck everyone!

Tulips

Ditto to everything Rose just said!  I'm so happy for you, too, because I know you wanted this!  Good luck, my fingers are crossed for no side effects.  I love that you are sounding so good!  When do you start?  And I'd also love it if you'd keep updating us about the Clear ID test and your experience with it (maybe a new thread??).

I just saw my oncologist, and he was very happy that I have no side effects, and suggested we stay at this dosage for another cycle, but if I have no side effects then, we would talk about increasing it for the 3rd round.  He said this without me needing to bring it up and sound pushy again, so that was awesome!

Tulips

I'm so happy to hear your good news!  So excited because I know you've wanted this!   I've read about the Cyenvenio Clear ID test in an article in I believe (stilling have chemo brain) Time magazine.  It's promising for BC research and autism. When do you start? Keep in touch and let us know how it goes with this new course in treatment!

Hugs!

Minigerkin

Sorry but I was away from this discussion for awhile. I am so happy to hear how well Tulips and Rose are doing on Xeloda!

Great news...I am seeing Dr Traina on April 15th while I am in NY for a family trip. It pushes back my starting adjuvant therapy a week or so but I think getting her opinion will help me feel comfortable with my decision. My MO at UCSD in San Diego has offered both Carboplatin (given once a week for 12 weeks) or Xeloda. She is only doing this due to my persistence and is a "standard of care" only doctor and would not proceed otherwise. Being BRCA- makes me leery about the carbo but wish there were more results on the xeloda. Either way I return on April 18th and will start chemo shortly there after. I am very well healed from my radiation. I used a cream called Repair. It is through Dr Schwab and they give this cream to radiation patients free of charge! I think it made such a difference for me...spread the word!

Tulips and Rose, do you mind breaking down your doses for me so I can present this at my MO appointments? I am 5'4" and 125lbs. 

Thanks so much!!

Cyber hugs!

Yes, there can be such a thing as radiation recall.  I am in the middle of my second round of Xeloda, and I have NOT had radiation recall at all.   But we did wait a month after I was done with radiation before starting on Xeloda, to reduce the risk of this happening.  So far, so good.

Someone on this forum (I think Warrior31) was doing radiation simultaneously with Xeloda.  She did end up with significant skin issues, and needed to take some time for healing.  Maybe there are some benefits of doing the 2 treatments simultaneously, but obviously it can also lead to skin issues in some cases.  (I hope you are all healed up and feeling better now, Warrior!).

Interestingly, when I was on AC last fall, I saw some skin rash popping up on me, just in areas that have been exposed to the sun (i.e. not within my bathing suit lines, but everywhere else).  My oncologist said that was likely radiation recall (radiation in this instance being past radiation damage from the sun, not from an accelerator at my radiation oncologist's office!).  It wasn't too bad at all, and it quickly went away when I was done with chemo.  But I know firsthand that it is possible for chemo to cause radiation recall.  It just hasn't happened with Xeloda for me.

While I'm on here, I'll just update to say that I'm on Day 7 of my second round of Xeloda, and still zero side effects.  I'm eager to complete this round side-effect-free, because I have heard for some people the hand-foot-syndrome, if they are going to get it, (not everyone does), doesn't show up until the 2nd round.  So getting through this round will make me very happy!  I'm also eager to learn what Dr. Traina has to say to you, Bethie!

Good luck to everyone on their BC adventures….

Tulips

Thanks!

Ima

Could I get some help from our TNBC sisters who have some experience with Xeloda? I'll explain what's happening and then give you the question because I'm not sure I'm understanding everything:

My surgical pathology report showed that I did not have a PCR and the largest tumour was 2.2cm x 1.5cm x 1.5cm. When I asked my oncologist about the possibility of Xeloda she said that Xeloda was contraindicated and it is used only for stage IV TNBC, not Stage IIIC which is where I've been placed. When I read what some of you have written, you're not stage IV and yet you're on Xeloda. Is this something to do with being in the US while I'm in Canada? Did I not read properly and that perhaps you have been placed at stage IV?  Am I missing something here? 

Thanks for helping me out.

I'm sending all my best wishes your way.  I hope you are healing well from your surgery, too.  I see you'll start radiation soon--I found this to be the easiest of all 3 phases, so you've definitely got the hardest parts behind you!

As far as Xeloda goes, historically it has only been approved for Stage 4 breast cancer.  I was Stage 2, but did not get a pCR (i.e., I had residual cancer after neoadjuvant chemo).  There was a study that was presented in December 2015 at the big San Antonio Breast Cancer Conference.  This study was based in Japan & Korea, and it focused just on Her2 negative patients  (so a mix of TNBC and ER+/Her2- patients) who had residual cancer after neoadjuvant chemo.  So they were NOT stage 4, but at higher risk of recurring than patients who got pCRs.  After 5 years, they were able to see if the patients who took 6-8 cycles of Xeloda fared better than those who did not get Xeloda, and it turns out they did.  In particular, the TNBC patients saw the greatest reduction in risk of recurrence: 42% risk reduction. (!!!  that's substantial in my book !!!). If you go back through this thread, I think you'll find a link to the articles and study.  You should read those, because they include all the details.  For example, they looked at patients who were node negative vs node positive.  The node positives had a greater risk reduction than the node negatives, but they did not break this out by TNBC vs. ER+/Her2-, which I found frustrating.  I wish they would just send me the original data so I could crunch the numbers myself the way I wanted to see them!  Anyway, I think it would be important for you to read the original articles if you are interested in learning more.

Based on that study, it seems that doctors in the US consider it very compelling, but not proof-positive.  They would LOVE to have more studies done, here, before 100% buying into that study.  One possible issue is that perhaps the Asian women metabolize Xeloda differently than non-Asian women.  Another possible issue is that perhaps they got a slightly different neoadjuvant chemo regimen than used here (although it did seem that they used a taxane and adriamycin, I think, so it sounds similar).  But it was compelling enough to get the NIH to change some existing clinical trials here to allow for Xeloda.  I'm sure in 5 more years, we will have some results of US studies that will either confirm or denounce Xeloda's effectiveness in these situations.

So right now, oncologists are in a quandary.  They want to have more to offer to non-pCR TNBC patients, and this study makes it seem that Xeloda can really help reduce risk.  So it sounds like there is a very very recent shift towards using Xeloda in non-Stage 4, non-PCR patients, but not all oncologists are on board.  For example, I think if I remember correctly, it looks like Dana Farber has decided to recommend it for node-positive non-PCR patients and "allow" it for node-negative non-PCR patients (i.e. if you are in that situation and you ask your DF oncologist to put you on Xeloda, they will agree).  And I think it sounds like Memorial Sloan Kettering is now recommending it for all non-PCR TNBC patients who are RCB2 or RCB3, if I remember correctly (but please check through this thread to double check my memory).  Some women on this board had their oncologists push the Xeloda, and others had their oncologists either not know about this study or not agree.  A mixed bag.  The only thing that everyone agrees on is that it will be awesome to eventually get confirmation of the effectiveness via other studies replicating this one.

I am on Round 4 of 8.  Each round is 3 weeks (2 weeks on, 1 week off).  So far, I have not suffered side effects.  At the end of Round 3, I had a minor case of hand/foot syndrome, but it's gone now.  I expect I may get that back again.  I haven't had any other side effects, including hair loss (it's rare on Xeloda to lose hair).

I think it's a very personal decision to ask for Xeloda or not....I think it depends on your comfort level with risk and with the level of your faith in this one study and with the extent that you feel you need to put chemo behind you, etc.  For me, it was a great relief to get my oncologist onboard because it does make me feel safer and it also makes me feel like I won't have any regrets if I recur--I'll know I took every available option to reduce my risk (including taking Vit D, exercising, and eating well).  But it is reasonable to decide either choice, I think.  Prior studies had not shown adjuvant chemo after no-PCR to be helpful, although the studies I came across were not exactly designed the way I think we'd want them, and from what I saw, there wasn't ever really an apples-to-apples similar study performed.  So many oncologists think there is no proof that any additional chemo will help, so they do not recommend anything but wait & watch in these situations.

Another wrinkle is that insurance companies may fight it because it hasn't officially been approved for this non-Stage 4 use.  But it seems like the women who have been prescribed Xeloda in these situations (including me) have ultimately been able to get it covered through an authorization process.

I hope this is helpful!

Tulips

Thank you for taking the time to respond to my questions. You answered everything and it turns out I did understand everything clearly before my appointment today. I did not have PCR and was node-positive and tried to have the discussion with my oncologist, but she was dead-set against it. I assumed it had something to do with the fact that I'm in Canada - just curious: any Canadian here on this forum women get approval for Xeloda? 

You've explained it very well, thanks again for the summary. I thought that perhaps it was either the chemo brain or that fact that I'm still on morphine that was clouding my reading  ability. I am a chemist by training, my chemistry brain is currently on hiatus and isn't working well at all post-surgery. 

And, thank you for encouraging me that the most difficult part is behind me. I am feeling battle-weary tonight, emotional about the radiation simulation tomorrow (to the point that I'm thinking of cancelling the appointment, but I know I shouldn't so I won't; it's just nice to toy with the idea of cancelling) so knowing that radiation will be easier allows me to feel so much better tonight, thank you. 

Do not worry about radiation, I agree with Tulips that it was easy to go through.  Just make sure you are really diligent with applying creams and lotions to the whole area.  I mostly used Aquaphor, applied it immediately after each treatment, and my skin barely got pink.  I am somebody who always burns in too much sun so I was expecting the radiation to give me some trouble, but luckily I had no issues.  I would apply the lotion liberally over the whole breast area, and especially over bony parts/where there is no fat since those areas will burn easier.  I actually thought the whole radiation month was quite relaxing.  There was something about having to hold the breath while they radiated that helped me be calm, sort of like a yoga breathing exercise, so I quite enjoyed it actually.

Good luck!  

I am from Canada and was in a similar situation to you after chemo. I also did not achieve a PCR (sentinel lymph nodes were negative but I still had 2.1cm x 2cm remaining in my breast). I have seen 2 Oncologists and neither were willing to prescribe adjuvant Xeloda or Carboplatin so to answer your question, yes, I think doctors in Canada are less likely to recommend anything outside the "standard of care". I brought the study that Tulips mentioned to my appointments but because it is new and there aren't more studies showing similar results, the Oncologists suggested focusing on exercising every day, eating right, buying organic and some of the other lifestyle choices that have been discussed on these boards. 

At first I was disappointed but have since decided to try some alternative therapies with a Naturopath which makes me feel like I am doing something. I don't know if it helps with your decision making but that has been my experience. Doing more chemo after everything you have been through is not an easy choice. 

I wish you good luck with radiation!