My husband is 66 and is showing neuropathy from three Velcade/Dex cycles of 4 treatments each (all but one). Carfilzomib (Kyprolis) was substituted for Velcade for Days 1,2,8,9,15,16, along with Cytoxan only two times and good old Decadron. He is handling this new regimen well and may even be improving. He showed the same 40% Myeloma cells as the biopsy previous to the Velcade regimen.
Now the Florida Cancer Specialists in Bonita Springs are saying Medicare may not honor Carfilsomib treatment for relapsed Velcade treatment if the Velcade wasn't combined with either Revlimid or Thalidomide. My husband experienced liver and kidney failure just before his diagnosis with multiple myeloma and the start of the Velcade/Dex treatments.
Anyone know about Medicare's handling of this? Onyx Pharmaceuticals called us and related this conundrum, also.
Thanks for any waylaying of worry. I try to carry burdens. He's got enough. Jerry's had fever for four months off and on. Dr. Rafat Abonour at IU Simon Cancer Center, Indpls., is his administrating doctor and prescribed acyclovir which helped with the fever. Of course, back problems persist. He follows his physical therapist's recommendations for "Turf and Surf" exercises to get his muscles back. He used to do 100 laps in the pool.
Why won't Medicare honor the oncologists working with individuals to put together treatments plans?
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Re: Medicare's honoring carfilzomib after Velcade
Hi Martha,
I've not had to deal with medicare before, but I have had experience with trying to get off-label drugs approved. Persistence is the key! Your cancer specialist's benefits folks know the ins and outs of submitting to medicare, so work closely with them to get this resolved. You may have to submit several times. In the end my case was referred to an outside doctor for review and approval. The insurance company finally paid, but it took over a year! Keeping in touch with the insurance company and the doctor's office prevented them from submitting my case for collection.
Some other thoughts...the benefit specialists at your docs may be able to put you in touch with organizations that help people with medical bills. Similarly, you may want to see if Onyx Pharmaceuticals has a program to help people pay for carfilzomib. Finally, have you looked to see if there are any clinical trials with carfilzomib that your husband may be eligible for.
Hope that helps, best of luck.
Carolyn
I've not had to deal with medicare before, but I have had experience with trying to get off-label drugs approved. Persistence is the key! Your cancer specialist's benefits folks know the ins and outs of submitting to medicare, so work closely with them to get this resolved. You may have to submit several times. In the end my case was referred to an outside doctor for review and approval. The insurance company finally paid, but it took over a year! Keeping in touch with the insurance company and the doctor's office prevented them from submitting my case for collection.
Some other thoughts...the benefit specialists at your docs may be able to put you in touch with organizations that help people with medical bills. Similarly, you may want to see if Onyx Pharmaceuticals has a program to help people pay for carfilzomib. Finally, have you looked to see if there are any clinical trials with carfilzomib that your husband may be eligible for.
Hope that helps, best of luck.
Carolyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Medicare's honoring carfilzomib after Velcade
Thanks, Carolyn, for your kind wishes.
Recently we found out from Onyx that the Medicare code should read 203.02 to show relapse before Kyprolis-Carfilzomib. We talked with Stephen, an oncology R.N. at Onyx, at 855-669-9560. The Florida Cancer Specialists here in Bonita Springs, FL, had it coded 203.00 and recently Dr. Rubin's nurse changed it.
Velcade was bad news for my husband who suffers with peripheral neuropathy. We are just praying that it will go away everntually.
Martha
Recently we found out from Onyx that the Medicare code should read 203.02 to show relapse before Kyprolis-Carfilzomib. We talked with Stephen, an oncology R.N. at Onyx, at 855-669-9560. The Florida Cancer Specialists here in Bonita Springs, FL, had it coded 203.00 and recently Dr. Rubin's nurse changed it.
Velcade was bad news for my husband who suffers with peripheral neuropathy. We are just praying that it will go away everntually.
Martha
Re: Medicare's honoring carfilzomib after Velcade
Hi Martha. My husband's dr is ARNOLD RUBIN also.in 2009 my husband mike under 3 rounds of Velcade and he almost died of kidney failure. The nephrologist suggested epoch to bring up creatnine level and it worked. Shortly after he had massive chemo and his first stem cell transplant and it worked. It lasted 3 years. This time, when my husband's myeloma went up. I wanted them to put him straight on epoch, but Dr Rubin wouldn't have it. He said he was putting him on Krypolis whether we liked it or not, but he never mentioned it was a form of Velcade. After 3 rounds of my husband struggling through the krypolis and ending up worse again from Velcade, they're going to put him on epoch as I had said in the first place. Now you're saying that his staff coded the krypolis wrong and it wasn't covered by medicare. I'll have to watch for that. Was it Tracey?
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diane123
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