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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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123Donna View Drop Down
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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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