wondering what chemo comes next?
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Peggy….indeed this answered my question – thank you so very much. A tidal wave of good wishes and tons of hugs coming your way. I will be thinking of you on the 24th.
MarionHi Marion,
John’s first two cycles were FOLFOX; then Avastin was added from May ’09 – Sept. ’09 with FOLFOX. This was for 10 cycles. Because of significant response, FOLFOX was discontinued and Avastin was given from Oct. ’09 – May ’10 every other week. FOLFOX was restarted with Avastin on 5-24-10 – 8-30-10. Then John had an adverse reaction to the oxaliplatin, and they stopped everything until 11-03-10 when he started back on Avastin. Because of progression in the liver, Gem/Cis was started 1-5-11 through May ’11 with Avastin. He had a break from June to August ’11, but his scans showed more progression in August so he restarted Gem/Cis/Avastin 8-26-11 – Oct. ’11. John started on Xeloda 11-1-11 where he takes it for 9 days and then is off 5. He still gets Avastin every other week, also. His last scans on Jan. 3rd showed more progression so his oncologist is rethinking his plan. We meet with his oncologist again on Jan. 24th. Hope this answers your question. PeggyP
Peggy…you are saying that John has been treated with Avastin since 2009 – was it the added agent to FOLFOX and Gem/Cis?
Deb….depending on your income (I believe: annual income of 75 thousand or less) you might also qualify for the compassionate use program offered by most major pharmaceutical companies. Dr. Steward’s office staff will be able to help you with this.
All my best wishes,
MarionHi Deb,
My husband John is currently on Xeloda and Avastin. He started with FOLFOX in April ’09 through August ’10 but had an adverse reaction to the oxaliplatin and had to stop. He had the sensory neuropathy that Marion mentioned and the oncologist told him that he would never fully recover from it. He still gets the tingling and numbness. After that, he went on gem/cis but had to discontinue that in October because it was causing damage to his left kidney. His right kidney was removed when he had a resection in August ’08. John has Stage IV ICC. We went to Georgetown in October to meet with a specialist who suggested the Xeloda. John has taken Avastin since May ’09. So far, the Xeloda hasn’t caused any major side effects. He tires very easily and says he has a stomachache, but he keeps going. After the first 2 cycles, the oncologist increased his dosage since he had tolerated it so well, but that caused his feet to get so sore that he could hardly walk. When he called the cancer center, they told him to stop taking it until he saw the doctor. He had 2 days left on that cycle. The oncologist went back to the original dosage which is manageable. John takes two pills in the morning and two at night for nine days, and then is off for five days; then, he starts over. He gets the Avastin every other week. That, also, causes him to fatique easily. Good luck on getting insurance to cover the Xeloda. Our hospital contacted the manufacturer because they said sometimes they would provide it for patients whose insurance didn’t cover it. They were told that they only provide it for breast or colon cancer patients. We were lucky in that the girl at the hospital found a pharmacy in Illinois that mails it directly to us and they charge it to our credit card. We live in Virginia. It’s bad enough to have to fight this disease and then you have to fight to get the chemo. I will pray that everything works out for you and that you are able to start your treatment on Wednesday. Best wishes, PeggyP
Deb……Request for Avastin notoriously is denied by insurance companies. Is Dr. Stewart considering another agent if that is the case for you also?
Yes, it has been used in this combo however, not as frequently as it had been used prior to 2009. The reasons may be related to insurance denials or due to clinical observations.
So sorry to hear that your still are bothered by the neuropathy. Is it improving at all?
Hugs and all my best wishes,
MarionHi Marions, Dr. Stuart has decided to start me on xeloda and iv avastin however I am having a heck of a time getting insurance to cover it. The copay is $1500.00 insane isn’t it. I am supposed to start the xeloda on wednesday and the avastin iv on thursday…hopefully . Are you familiar with this combination? My fingers are really painful so I will finish up for now. Thanks , deb
Oh Deb…I have been thinking of you and am thrilled to hear from you.
I have learned that the majority of patients affected by chronic, cumulative sensory neuropathy due to Oxiliplatin recovering from grade 3 neurotoxicity to grad 1 or less within 6 to 12 months after discontinuation of therapy. There is all the reason to believe that you will belong to this group.
I am interested to see if Dr. Steward will include a multikinase inhibitor?
I so much agree with your attitude…we do not have an expiration stamp on our feet.
Hugs and all my best wishes,
MarionI am wondering what chemo cocktail will come next. I just had my MRI about 2 weeks ago to see what my lesions from my recurrence of cc were doing….seems after 6 months of oxaliplatin and gemcitabine they continue to grow :rolleyes: My oncologist is on vacation and all I know is that the team will meet and decide what chemo we should do next. Any ideas what my options are? What has worked for others and side effects etc? I was also wondering if the side effects from my recent chemo (numbness and tingling) in my fingers and feet will ever go away? Although it was said to me that I have 12 to 18 months to live ,6 months ago I don’t believe it for a minute
I have way to much left to live for… 
Best wishes to all our family and friends here on the cc board. <> deb
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