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All about Xeloda

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Comments

  • Stilts
    Stilts Member Posts: 228
    edited June 2016

    Becs...hope u enjoy Minnesota! I live in a suburb of the Twin Cities

    JFL...appreciate the probiotic idea

    Goldie...sounds like my 8 tabs daily will be the max...thank goodness!

    Has anyone had success finding copayment assistance with Xeloda

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited June 2016

    Stilts, MA has no copay for any chemo drugs for private insurance patients so I have not investigated and assistance programs. Do you have private or government insurance? The answer is very different based on your response.

    Done.Done.Done. with cycle 8B. I am finding the 7 on/7 off protocol to be easier. I walked all over Restaurant Depot today [dumb I know] and my feet are once again on fire, but it didn't start to bother me until just yesterday. And now, I get 7 off days to recover. Parts of me are anxious about taking less drug, but, if I had stayed at a full dose, I fear I would have been taking no drug.

    All the best to all,

    *susan*

  • babs6287
    babs6287 Member Posts: 1,619
    edited June 2016

    Susan

    I've been on the 7 on/7 off cycle since I started on 1/1/16. I could NOT imagine being on X for longer at a time. In fact, I'm hoping after my scans on 6/27 that I can take a 2 week break-depending upon the results of course!

    Babs

  • goldie0827
    goldie0827 Member Posts: 6,835
    edited June 2016

    Stilts, I get assistance For my Xgeva through Amgen. And for the Xeloda through Good Days.

    Hoping all of you get to take a little bit of a break from Madame X.

  • husband11
    husband11 Member Posts: 1,287
    edited June 2016

    Anyone have a source of some information on the 7 days on 7 days off regimin that might help convince an ONC to prescribe it in that manner? I understand Memorial Sloan Kettering has something to do with this protocol. I also understand that it is currently the subject of a clinical trial.

  • Becs511
    Becs511 Member Posts: 118
    edited June 2016

    Hi Timothy. I go to Sloan Kettering and am meeting with my doctor tomorrow afternoon to start Xeloda. I will let you know what regimen she recommends for me and if she mentions a clinical trial.

  • goldie0827
    goldie0827 Member Posts: 6,835
    edited June 2016

    Timothy, it's your body. Why can't you do what you want? I did ask my onc about the 7/7 schedule, and he was ok with it. However, my TM's went up. So back to the 14/7 schedule.

  • husband11
    husband11 Member Posts: 1,287
    edited June 2016

    Thanks all. I agree with you 100% goldie on patient freedom. Unfortunately my wife's Onc wasn't at all familiar with a 7 on 7 off routine. He was however ok with taking 14 days off a 14 day long cycle. My wife is getting good response from the xeloda, but bad hand foot syndrome. She is pretty much bedridden. It's something worth trying, if it both works and reduces the syndrome. She is likely going to take 2 weeks off with his permission owing to another problem, the treatment seems to have brought on ascites. The ascites only developed at day 9 into treatment and has only gotten worse, despite tumor markers and MRI showing her liver mets getting smaller. I'm reasonably certain its some side effect of the treatment, possibly some interaction between the xeloda and the cancer, onc thinks it might be an immune response to tumor necrosis. Whatever it is, it only came on following treatment, and seems to have waned a bit then came back with the next cycle.

  • Kessala
    Kessala Member Posts: 91
    edited June 2016

    Hi Stilts! I'm a Minnesota gal too! :)

    My Xeloda prescription is covered by Blue Cross/Blue Shield. Once generic Xeloda (capecitabine) became available my insurance required I switch off of brand name Xeloda and onto the generic. Despite being on the generic my monthly co-pay was still $250.00!

    The mail order pharmacy our insurance requires us to use pointed me to a charitable organization called Patient Advocate Foundation. A worker at the mail order pharmacy actually dialed PAF's number and stayed on the line with me as I spoke with their worker over the phone. I answered questions as to my SS number, our annual income (we're retired) and by the end of the phone conver I'd been okayed for a $5,000 grant! Patient Advocate Foundation is billed directly for my "fake" Xeloda (I always joke that generic drugs are fakes even though I know they aren't). I no longer pay any co-pay for my capecitabine. The grant runs for 12 months and at that time I'm able to apply again!

    Don't worry that your income will be too high for PAF to assist you. They give a lot of leeway!

    www.patientadvocate.org On the blue line on top of their web page click on Get Help. From the drop-down menu click on Apply For Co-Pay Assistance. You're on your way.

    This is the first time I've ever had co-pay help for medication. What a relief to have that monthly co-pay off my shoulders! My grant expires this July and I intend on contacting PAF for assistance once again.

    Kessala

  • babs6287
    babs6287 Member Posts: 1,619
    edited June 2016

    Timothy-I go to MSKCC and from day 1 on Xeloda I was put on the 7/7 regimen. I think that might be their protocol.

    Babs

  • Stilts
    Stilts Member Posts: 228
    edited June 2016

    Kessala...thanks so much for the valuable information...I will definitely look into that!

    Anyone have success with taking Pyridoxine ...Vitamin B6 to help with HFS

  • Kessala
    Kessala Member Posts: 91
    edited June 2016

    Hi Stilts - me again - Kessala

    After I was suffering from HFS my, then, oncologist started me on Vitamin B6, Vitamin B12 and one other vitamin I can't recall now. She actually handed me a photocopied sheet listing these vitamins so obviously the instructions were given out to anyone complaining of HFS.

    I took all three supplements as instructed. She told me not to expect immediate results but the vitamins "might" help alleviate my HFS symptoms.

    Three months later I saw no difference whatsoever. She and I decided it wasn't worth continuing.

    Kessala

  • husband11
    husband11 Member Posts: 1,287
    edited June 2016

    My wife has tried Vitamin E and B6 and didn't get any relief from HFS. She is currently trying celebrex.

    Her onc is suggesting two weeks on and two weeks off for lessening side effects. Said he'd never heard of the 7 on 7 off. Sure wish I could dig up more info on it. Found the state 2 clinical trial and also some chart showing the mathematical evidence, but nothing better. I'd like to show him the best there is to find.

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited June 2016

    Timothy,

    The studies about 7/7 are all out of Memorial Sloan Kettering. My science-based oncologist is convinced that this protocol is valid once the disease has been stabilized on Xeloda.

    I found this on this site: http://www.breastcancer.org/symptoms/types/recur_metast/ask_expert/conf_2007_10/question_04. An abstract: http://jco.ascopubs.org/content/26/11/1797.full Then Phase 2 of that same study: http://onlinelibrary.wiley.com/doi/10.1002/cncr.25992/full. More on Phase II: http://annonc.oxfordjournals.org/content/early/2010/05/25/annonc.mdq264.full

    These three links alone should give your oncologist the ability to find the full studies. I don't have access to them.

    *susan*

  • husband11
    husband11 Member Posts: 1,287
    edited June 2016

    Thanks Susan. I'm wondering why the phase 2 trials were done in combination with another agent. Kinda muddies the results for those wishing monotherapy with capicitabine.

    Babs, what dosage of xeloda did they start you on with the 7/7? And did they escalate the dosage every so often?

  • goldie0827
    goldie0827 Member Posts: 6,835
    edited June 2016

    Dosage for me went like this, I'll just do pills as the 7/7 schedule didn't work for me....

    7 too much, dropped to 4, then to 5, and then to 6. After I was on 6 for awhile, I thought I would see if I could tolerate the 7 again. Did it for 2 weeks, and went back to 6, SE's just too much on 7.

    Never heard of anyone doing a 14/14 day regimen!

  • husband11
    husband11 Member Posts: 1,287
    edited June 2016

    Goldie, are those 500mg pills or 150's that you took 6 (and I'm assuming 2x daily)?


  • goldie0827
    goldie0827 Member Posts: 6,835
    edited June 2016

    Tim, 500 mg, and yes twice a day. All pills 500mg, taken twice daily. I'm doing ok on 6 pills daily, 3 in the am and 3 in the pm.

  • husband11
    husband11 Member Posts: 1,287
    edited June 2016

    Thanks Goldie. I really appreciate the sharing of information. I will discuss this with the oncologist further. I read one report where a woman who had previously succeeded with the 2 weeks on 1 week off regimen, but then later it eventually quit working, switched to the 7/7 and it worked again. So clearly some (or all ?) patients will benefit from this routine.

  • babs6287
    babs6287 Member Posts: 1,619
    edited June 2016

    Timothy. I was on 2000 mg in the AM and 2000 in the pm (total of 8-500 pills per day). Due to bad HFS I was lowered to 3-500 in the am and 4-500 in the pm. Last month I was lowered to 3 in the AM and 3 in the PM.

    Babs

  • susan_02143
    susan_02143 Member Posts: 2,394
    edited June 2016

    I can't imagine four of these suckers two times a day. :: shudder ::

    *susan*

  • babs6287
    babs6287 Member Posts: 1,619
    edited June 2016

    Susan-trust me it wasn't easy but I was determined to stay on that for as long as possible since I was getting such good result. I did until the middle/end of May and then went to 6 pills a day the beginning of June.

    Babs

  • goldie0827
    goldie0827 Member Posts: 6,835
    edited June 2016

    Timothy, it amazes me how one drug can react so differently in all of us.

    Babs, I don't know how you handle that dosage. I would rather die I think.

    Susan, I'm with you on the shudder, but mostly cuz I've been there!

    Not sure if I mentioned or not, my last labs show my TM's stable. My CEA went from 7.2 to 6.1. My CA's one went from 86 to 84 and the other one went from 72 to 76.

  • JFL
    JFL Member Posts: 1,373
    edited June 2016

    Great news! I had a PET scan and Xeloda is working. 3 months ago, I had a sudden explosion/progression of my liver mets, with nearly my entire left lobe comprised of mets and inumerable tumors, some quite large, on the right side. The progression all occurred in less than 3 months since my prior scan. I started Xeloda after the progression 3 months ago. Per the PET, I now have no hyper metabolic activity in the left lobe and shrinking mets throughout my liver. Also, for the first time since diagnosed in Dec 2014, I have no hyper metabolic activity in my (very extensive) bone mets. Yay! Hoping Madame X sticks with me for a long, long time. The side effects are worth it for good results.

  • babs6287
    babs6287 Member Posts: 1,619
    edited June 2016

    JFL. I agree. I'm dealing with these SEs since it's working!!!! So happy for you!!! Time to do the happy dance!!!!

    Goldie. Stable is music to all of our ears!!! How great!

    Babs

  • husband11
    husband11 Member Posts: 1,287
    edited June 2016

    JFL, that is great to hear. Congratulations.

  • Peanut0110
    Peanut0110 Member Posts: 37
    edited June 2016

    I am happy that Madame X is working for everyone I started it two months ago myself and now hopefully it is working for me also. See how good it is to hear good news it gives us all hope.

  • Stilts
    Stilts Member Posts: 228
    edited June 2016

    Just started on Xeloda this week....great to read the positive responses !!!! I am hoping I will be posting some positive news in the not too distant future !!

  • goldie0827
    goldie0827 Member Posts: 6,835
    edited June 2016

    JFL, that is awesome! Congrats and may Madame X work for a long time.

    Babs, I just wish for a while I could be NED, instead of just stable. But of course, I will take stable!

  • Lovestosing
    Lovestosing Member Posts: 49
    edited June 2016

    Just posting to say Xeloda is working for me! All the sore hands and feet and big Ds have been worthwhile as my scan results have showed great improvement. On a lovely month off now so I can have a little break with my family! The only downside is an area in my back that they thought was degeneration due to being middle aged has an area that they now believe was cancerous. My oncologist says that when the cancer was healed by the chemo, it tends to show up on the screen more clearly so unfortunately all along I have had it in my liver, lungs and bones. Bought myself a Fitbit now my feet are better so in this month off, I can get rid of some weight I've put on - here's hoping!


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