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Xeloda - Oral Chemo - Any Suggestions?

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Barbs View Drop Down
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    Posted: Oct 27 2020 at 10:17pm
I am a 70 year old woman diagnosed in March of this year with TNBC in the left breast with 3 involved nodes.  I had 12 Taxol/Carboplatin chemos and 4 A/C chemos that resulted in significant shrinkage of the tumors.  Two weeks ago I had a lumpectomy and 16 nodes removed.  Pathology of the breast tissue showed no cancer cells and clear margins. However 2 of the 16 nodes that were removed tested positive for cancer cells.  Today my oncologist gave me a grade of B+ with regard to success.  However, he is now recommending an 8 course treatment of an oral chemo drug Xeloda (Capecitabine) over a span of 6 months.  Has anyone else had experience with this drug?  Side effects can be pretty bad - is it worth the time, expense and pain.  A recent study indicates a 10-20% improvement in odds of non recurrence. 
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SagePatientAdvocates View Drop Down
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Post Options Post Options   Thanks (0) Thanks(0)   Quote SagePatientAdvocates Quote  Post ReplyReply Direct Link To This Post Posted: Oct 28 2020 at 9:18am
Dear Barbs,

I don't think anyone here can tell you whether the Xeloda "is it worth the time, expense and pain?" We, including me, are not medical professionals and I suggest you speak to a 
Breast Medical Oncologist to get a second opinion on your case, if you are willing to, rather than relying on anyone here.

Depending on where you live, your insurance coverage and willingness to travel I may be able to find someone you can speak to who is knowledgeable about TNBC and 
may reaffirm the Xeloda suggestion or not.

I have helped many who have taken Xeloda and here is a link from Mayo Clinic that describes the drug and if you scroil down you will see many side effects listed. If you decide to take the drug you may experience some of the side effects, but, often, not all of them. From my experience you may experience some of them but everyone is different and the side effects are often different for each person. 

Here is the link-

https://www.mayoclinic.org/drugs-supplements/capecitabine-oral-route/side-effects/drg-20062501?p=1

wishing you good luck no matter what you decide.

Please send me a Private Message and I will send you my phone number if you would like to talk but, again, I will not tell you whether or not to take Xeloda or any other drug. 

warmly,

Steve 


Edited by SagePatientAdvocates - Oct 28 2020 at 9:21am
I am a BRCA1+ grandson, son and father of women affected by breast/oc-my daughter inherited mutation from me, and at 36, was dx 2004 TNBC I am a volunteer patient advocate with SAGE Patient Advocates
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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: Oct 28 2020 at 9:26am
Hi Barbs,

There have been several members take Xeloda after neoadjuvant chemo.  I'll post the threads on the subject.  My only thought about this disease is we only get one chance to try and kill this beast the first time.




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 Debaura211 Quote  Post ReplyReply Direct Link To This Post Posted: Dec 16 2020 at 8:42pm
Is anyone doing metronomic xeloda - about 1/2 the dosage of the 2 week on/one off 6 month regiment, but for a year?
Deborah
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Post Options Post Options   Thanks (0) Thanks(0)   Quote pawwjw Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2021 at 7:53am
Hi Barbs,
I am 65, diagnosed 6/20, did AC & taxol chemo, lumpectomy (did not have CPR; tumor was 2mm at surgery) 12/23, & 20 radiation treatments. Started capecitabine 3/6 1,800 mg 2x a day (10 pills). That was my choice; I want to do everything available to prevent reoccurrence. Had awful lip and mouth sores and intense back pain. Dr. adjusted the dosage to 1,500 mg 2x a day (6 pills) and they gave me an extra week off. I am on these meds for 2 weeks and off 1. Sores now are completely healed. Still dealing with back pain which is awful as I am a very active person and my activities are now limited. Will start new dosage 3/27. If you have good insurance, it'll be covered. The cost of mine is completely covered.
Anyone have experience with the back pain?
Good luck, Barbs! You'll make the right decision for you!
Pam
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Post Options Post Options   Thanks (0) Thanks(0)   Quote Debaura211 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2021 at 9:04am
I've been on Xeloda since Dec., on cycle 5 of 8. 3000 mg. Side effects haven't been too bad, from what I'm reading it's different for everyone. My major one is fatigue, which worsens throughout the day so if it doesn't get done in the morning it's not gonna get done. I attribute it to low hemoglobin count. I also have some mild and foot syndrome but nothing terrible yet. And nothing tastes good to me so I make myself eat to maintain my weight. It is a challenge, but hopefully one worth taking.
Deborah
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Post Options Post Options   Thanks (0) Thanks(0)   Quote cookie54 Quote  Post ReplyReply Direct Link To This Post Posted: Mar 21 2021 at 7:04pm
Hi Barbs, I am currently on Xeloda for tnbc stage 3c being 5nodes out of 8 still were positive after surgery. I am on 3,00mg per day total of 6rounds. I am currently experiencing some hand/foot syndrome and I am doing everything possible to keep it from progressing. I find the best lotions are Aquaphor, Udderly smooth 20 and bag balm to help with the symptoms of HFS. Other than that my labs have been stable and energy level has been good! Obviously everyone has a different experience with chemo and hopefully you will sail through without any issues.
My thoughts are tnbc is an aggressive beast at times and this is my second time around with it. I am willing to do anything I have to do to defeat this once and for all! To me the risks outweigh the benefits and I am all in.
Also I was stage 1 with no lymph node involvement on first diagnosis in 2016 and almost 4 years later had a recurrence. Not trying to be a downer but a realist that we need to use every weapon we are offered to defeat tnbc.
Best wishes to you, be well.
Andrea
8/2016,IDC,Stage IA, Grade 3,0/1 nodes ER-/PR-,HER2-
9/2016 BMX;Recon Saline implants
6/20,StageIIIC,Grade3 ER-/PR-HER2-
6/20 Carbo/Gem/pembro
10/20 ALND 5/8 nodes
Rad11/20-12/20
Xeloda 2/21


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Post Options Post Options   Thanks (0) Thanks(0)   Quote LoriDee Quote  Post ReplyReply Direct Link To This Post Posted: Mar 27 2021 at 9:26am
Hi all, I was diagnosed with IDC stage 2 in 2008 at age 38, chose bilateral mastectomy and had 6 rounds of chemo.  All clear until2014 when found MBC in spine and skull. I changed treatment, had radiation and started Monthly Zometa infusions. I was in remission until COVID hit and I missed a few infusions. This past November they found progression in bones and tumor on liver. To top it off, my cancer is no longer estrogen/progesterone receptive. Now Iím triple negative with no known mutations. Iíve had hip and lumbar radiation and take 4000mg Xeloda 2 weeks on one off. After 4 rounds of Xeloda my cancer markers have dropped from 112 to 69! Iíve had some mouth sores, fatigue, and moderate hand/foot syndrome but no blisters/pealing. I find it tolerable and at least it is working!
 Iíve not found much research on why cancer turns Triple negative or what life expectancy is. Also, just had SABR radiation for liver denied by insurance AFTER liver marker procedure was approved and done! Has anyone dealt with this type of change/treatment and what treatments have worked?


Edited by LoriDee - Mar 27 2021 at 9:28am
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