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Xeloda after AC-T chemo, mastectomy and radiation?

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NV2020 View Drop Down
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    Posted: Jun 19 2020 at 6:22pm
 I have questions about Xeloda. 

My primary, local oncologist and second opinion oncologist from Dana Farber have both recommended Xeloda based on “currently accepted data and research”.

I have just completed the “big three” for triple negative breast cancer (TNBC): AC and Taxol chemo, full right mastectomy and 6.5 weeks of radiation. (I did not receive a complete pathologic response to the chemo, so after surgery I went on to radiation. The post-surgical pathology report revealed a micromestasis with one positive lymph node). I am now scheduled to start Xeloda next week and I am having second thoughts about it.

The Dana Farber oncologist confirmed that there is current controversy about whether Xeloda is even effective with patients who have the “basal sub-type” of TNBC. My local oncologist says I have basal-type TNBC, though I have not had the genetic EGFR and CK5/6 testing that identifies this. When I requested these tests, she declined to order them as they are “not FDA approved“ and thus the health insurance company wouldn’t pay for them. Regardless, I am willing to pay for these tests and the necessary tumor specimen from my mastectomy can easily be sent from the local pathologist to a genetics lab.

My local oncologist additionally says that I have completed the “required” three therapies as noted above and thus Xeloda is an optional “extra”. This statement, as well as the lay person research I have conducted, leads me to believe that while “standard of care”, Xeloda is not yet clinically considered an “automatic” treatment like AC and Taxol for TNBC.

I am not opposed to further chemo. (In fact, I am looking at a Mayo Clinic clinical trial for a TNBC vaccine which includes the use of Cytoxan for both arms of the study.) However, I’m wondering if Xeloda is even worth enduring the 6 months of treatment if its efficacy is “iffy” for the basal sub-type of TNBC.

Any information or guidance you could provide would be greatly appreciated.

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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 20 2020 at 11:09am
Hello,

It's hard to make a decision if you really don't know the sub-type of TNBC without further testing.  How can they confirm you have the basal-type if not tested?  What if that information is incorrect?  What is the cost to genetic test your tumor?

Interesting about the vaccine clinical trial.  Is there a placebo arm or does all study participants get the study drug?

What do your oncologists think of Xeloda vs the vaccine trial?  Do they recommend one over the other?

It's always difficult to weigh treatment options.  Wishing you the best on your decision.

Donna


Edited by 123Donna - Jun 20 2020 at 11:11am
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote NV2020 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 21 2020 at 10:45am
Hi Donna:

Thank you for taking the time to respond to my post. This is my first foray into online forums, cancer or otherwise.

The sense I get, based on my lay person research, is that some/many? oncology communities automatically prescribe adjuvant Xeloda following chemo, surgery and radiation when there is residual disease. So much weight is given to the CREATE-X clinical trial that the smaller, subsequent, unpublished Madrid trial (concluding that Xeloda is not effective for basal-type TNBC) is disregarded. I believe my local oncologist is in that camp.

Nevertheless, I still have questions about the efficacy of Xeloda. Most of the posts regarding Xeloda that I see relate to patients already taking Xeloda and do not address the issue of whether to even start it. 

I really am tech challenged. Do you know where I might find that information from a patient’s perspective?

Barbara
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 21 2020 at 12:38pm
Hi Barbara,

Yes, it's difficult to search and find the data.  I wasn't sure what you were referring to in your last sentence. "Do you know where I might find that information from a patient’s perspective?"  Please explain and I'll try to help you if possible.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote NV2020 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 21 2020 at 5:24pm
My bad.

What I meant to ask was do you know where I could find specific forums, discussion boards, etc. where patients discuss whether or not to start adjuvant Xeloda? So far i have only 
found posts from other patients who are already taking Xeloda.

Thanks again.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote 123Donna Quote  Post ReplyReply Direct Link To This Post Posted: Jun 22 2020 at 8:17am
No, I'm not aware of any discussion boards.

Donna
DX IDC TNBC 6/09 age 49, Stage 1,Grade 3, 1.5cm,0/5Nodes,KI-67 48%,BRCA-,6/09bi-mx, recon, T/C X4(9/09)
11/10 Recur IM node, Gem,Carb,Iniparib 12/10,MRI NED 2/11,IMRT Radsx40,CT NED11/13,MRI NED3/15

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Post Options Post Options   Thanks (0) Thanks(0)   Quote NV2020 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 22 2020 at 8:58am
Ok, thank you for checking. I appreciate it.

Barbara
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Kim C Quote  Post ReplyReply Direct Link To This Post Posted: Jun 24 2020 at 1:04am
There is a Facebook page called Xeloda (Capecitabine) support group. Maybe it would be helpful for you. I had residual disease and was in a clinical trial of Xeloda. I'll be 4 years from diagnosis August 4. Best of luck to you going forward. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote NV2020 Quote  Post ReplyReply Direct Link To This Post Posted: Jun 24 2020 at 3:23am
Thank you for taking the time to respond to my questions. 

My sister referred me to the Facebook page also, but I
haven’t seen any posts related to whether or not
Xeloda should even be started. I’ll keep checking.

Did you take Xeloda as a stand-alone adjuvant therapy or in combination with other drugs? Also, did you have any testing for TNBC subtypes? Finally, which clinical trial were you in?

Thanks again.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote clifford1 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 08 2020 at 6:13pm
I am an 8-year TNBC survivor. I have not researched Xeloda. I have a friend who is taking Xeloda for non-basal TNBC. Typically women who are BRACA negative and don't have the PDL1 protein may fall into the non-basal category. This is my guess. I have another friend who had her tumor analyzed by Caris Life Sciences. 

I have researched TNBC subtypes extensively by studying peer reviewed journals. Until research and treatment is focused on TNBC subtypes, significant progress will not be made in a clinical setting for early stage TNBC. Most FDA approved treatments are for advanced stage disease. This is very disturbing for me. 

One can’t discuss TNBC subtypes without referencing the vanguard 2011 research study, Identification of human triple negative breast cancer subtypes and preclinical models for selection of targeted therapies, conducted by Dr. Brian D. Lehmann and colleagues. In my book: Orange is the New Pink: My Battle with Triple Negative Breast Cancer, I include an Analysis of TNBC subtypes that is from journals dating back to 2011 up to 2018.  www.marquitabass.com. ;
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jheffron Quote  Post ReplyReply Direct Link To This Post Posted: Jul 17 2020 at 10:53pm
I too am looking for info on xeloda. I’m done with chemo, surgery and have one more radiation treatment left. I now have to think about xeloda. Should I start?  What’s the benefit. I’ve been told it’s standard of care for TNBC. Helps with minimizing reoccurrence. Need to meet with my oncologist again. 

I’ve been told TNBC is basal-like. That seems vague. Not sure how that is confirmed. So I am hesitant to take and endure 18 weeks of pills and side affects. 

And I’ve also been asked to consider I trial that runs In tandem with xeloda. Of course more risks and side affects to deal with. A lot to take in. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote robinbird Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2020 at 11:25am
I am 5 years out and opted for the Xeloda after radiation when my oncologist said no to trials.  It's easier than the others I had, but hard on my feet.  I had no idea if my tnbc was the basal type.  I just know I didn't get a pathological complete response and wanted to do something more.  I'm glad I did it.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote NV2020 Quote  Post ReplyReply Direct Link To This Post Posted: Jul 18 2020 at 2:37pm

Hopefully I can save you some time in your research of Xeloda. 

I recently came across a July 7, 2020, article from Medpage Today in the ASCO Reading Room entitled "Alternative Adjuvant Regimen for TNBC".  I found it to be a very good summary that included a brief discussion of previous clinical trials that have led to the current use and controversy of adjuvant Xeloda.

Beyond that, I've spent many hours researching TNBC and Xeloda online. I was a worker's compensation attorney for almost 30 years, so I have some familiarity with medical reporting and such, but I was completely overwhelmed by the sheer volume and complexity of information relating to TNBC and Xeloda. Consequently, I received an online second medical opinion* from a Massachusetts General Hospital (MGH) breast cancer oncologist.  In part, I wanted the oncologist to interpret all of the seemingly endless data, clinical trials, statistics, algorythms, publications, research, etc. and make sense of it all for me.  

Like you, I was reluctant to dive into yet another chemotherapy by starting Xeloda (I also had neoadjuvant treatment - AC-T chemotherapy, mastectomy and radiation.) I also questioned whether Xeloda was even effective for "basal-type" TNBC. (This distinction is discussed in the ASCO article.) My treating oncologist would not order the basal/non-basal phenotyping, saying it was "not FDA approved" and "not relevant".  I didn't quite know what she meant by "not relevant".

I think the second opinion MGH doctor best explained it by noting that this subtyping really only is relevant in a research setting, not in a clinical setting. I guess the clinicians today simply don't yet know what to do with that information. Perhaps TNBC subtyping will be common practice in the future, but it looks like we're just not there yet. If you look above, another contributor discussed this is her comments.

So, beyond the subtyping issue, the MGH doctor also stated:

 "[Xeloda] is listed in the...NCNN as 'consider capecitabine' for paitents with residual disease, so it is viewed as a choice. but certainly a reasonable option to consider by breast cancer experts from top centers around the country, including MGH and Dana Farber." 

 (The doctor's reference was to the NCCN  - National Comprehensive Cancer Network - which publishes national clinical practice guidelines in oncology.)

The clincher, though, was his opinion that I had a "slightly better than 50/50 of recurrence over the next 5 years without adjuvant Xeloda, and closer to a 30% risk of recurrence with adjuvant Xeloda."  Of course, this opinion only applies to my specific case. 

In any event, I hope you find something helpful in all of the above. By the way, what clinical trial are you looking at? My treating oncologist has also suggested one.



* I received the online second opinion through a company called Grand Rounds, which I found quite by accident and even better, I later discovered that my insurance (Blue Cross/Blue Shield) would pay for it. I have no affiliation with Grand Rounds, but I found it to be nothing short of amazing!  Anyone can obtain an online second medical opinion (cost is very reasonable if not covered by insurance) by preeminent doctors across the country. In my case here, I received a second opinion from a Massachusetts General Hospital (MGH) breast cancer oncologist.  His education and qualifications include: Harvard undergraduate; Harvard MPH; Harvard Medical School; Harvard Fellowship; and Harvard Medical School Professor. And, I received his opinion in just four days because it was expedited. Last year I received a second opinion from a Stanford neurosurgeon for an unrelated spinal issue. It was also excellent.
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jheffron Quote  Post ReplyReply Direct Link To This Post Posted: Jul 21 2020 at 4:25pm
Thanks for all the info/input. The trial I have been asked to consider is Nivolumab/Opdivo. Gather this drug is approved for other cancers and being studied for TNBC. The trial would run concurrent with the Xeloda. So if timing works if I decide to go this route. Hard part is all the side affects, 3 years follow-up, and randomized so may not get the drug. Which of course is part of any trial. The Oncologist who is heading this up in the area stated this drug was close to be approved for TNBC. Not sure what that means? Speaking with her again tomorrow to get more details. 
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Post Options Post Options   Thanks (0) Thanks(0)   Quote jheffron Quote  Post ReplyReply Direct Link To This Post Posted: Jul 21 2020 at 4:29pm
Thanks for sharing your thoughts. I do know a woman who just finished xeloda and only had few side affects with her hands/feet. They did reduce her dose once or twice after each 3 week cycle and that seemed to help the redness/rash/blister issues that popped up. She made it through the rest with few issues. This is about reducing the reoccurence, I get that. I just tend to be more holistic in my approach and avoid taking pills but with a cancer diagnosis some of that has been thrown to the curb. Smile
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