I was wondering if anyone had any experiences delaying/skipping treatment due to insurance (or any other reason).
We started one cycle of CyBorD [cyclophosphamide (Cytoxan)+ Velcade + dexamethasone] late in December. It was supposed to be 3 weeks on, and then 1 week off. However, due to some Insurance challenges, we are going on 2 weeks awaiting the second cycle.
The first cycle of CyBorD appeared to be affective relieving many of the symptoms or multiple myeloma, bone pain and kidney failure. We are now able to walk around as opposed to being confined to a bed. However, without treatment, I am wondering how long this will last.
How long do the effects of CyBorD last? How long is too long before the next cycle should commence?
Forums
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Re: Delaying/skipping treatment - how long is okay?
Hello,
I don't have an answer for you, but just wanted to wish you well, and hope that the insurance issues resolve quickly.
Perhaps the Chronic Disease Fund and/or some other resources can be helpful at this time also?
I don't have an answer for you, but just wanted to wish you well, and hope that the insurance issues resolve quickly.
Perhaps the Chronic Disease Fund and/or some other resources can be helpful at this time also?
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dnalex - Name: Alex N.
- Who do you know with myeloma?: mother
- When were you/they diagnosed?: 2007
- Age at diagnosis: 56
Re: Delaying/skipping treatment - how long is okay?
Thanks for the well wishes:).
Just by reading and learning from real life stories on the forums is giving me hope that multiple myeloma is a treatable condition.
Just by reading and learning from real life stories on the forums is giving me hope that multiple myeloma is a treatable condition.
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inquisitive
Re: Delaying/skipping treatment - how long is okay?
Hello Inquisitive,
The answer to whether or not delays in treatment matter is ... it all depends. The best example is that, if you have kidney problems from your myeloma, delays in treatment are CRITICAL and should not be allowed.
For many patients, though, it would be ok for a delay of a couple of weeks. A delay of more than 2-4 weeks would make me recommend hiring a lawyer to threaten the insurance company. I also would call the insurance company every day and ask your physician to get involved as well. The more you bug the insurance companies the quicker they respond. It is unfortunate that this is the case, but it is our current reality in health care.
A note about CyBorD. This combination regimen was designed to be given continuously with no breaks for 16 to 24 weeks in preparation for a stem cell transplant. Modifying the treatment to have one week out of every 4 weeks off may decrease its efficacy.
The answer to whether or not delays in treatment matter is ... it all depends. The best example is that, if you have kidney problems from your myeloma, delays in treatment are CRITICAL and should not be allowed.
For many patients, though, it would be ok for a delay of a couple of weeks. A delay of more than 2-4 weeks would make me recommend hiring a lawyer to threaten the insurance company. I also would call the insurance company every day and ask your physician to get involved as well. The more you bug the insurance companies the quicker they respond. It is unfortunate that this is the case, but it is our current reality in health care.
A note about CyBorD. This combination regimen was designed to be given continuously with no breaks for 16 to 24 weeks in preparation for a stem cell transplant. Modifying the treatment to have one week out of every 4 weeks off may decrease its efficacy.
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Dr. Edward Libby - Name: Edward Libby, M.D.
Beacon Medical Advisor
Re: Delaying/skipping treatment - how long is okay?
Thank you for informative response and information Doctor.
If I may ask a follow up. Assuming we do a stem cell transplant, would the continuous CyBorD treatment suffice, or do we still go through high dose chemo directly prior to transplant.
If I may ask a follow up. Assuming we do a stem cell transplant, would the continuous CyBorD treatment suffice, or do we still go through high dose chemo directly prior to transplant.
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inquisitive
Re: Delaying/skipping treatment - how long is okay?
Even if you do the continuous CyBord, you'll still have to do the high-dose melphalan before the transplant. The only reason the transplant is done is because the high-dose melphalan kills off most, if not all, your bone marrow cells. So you need the transplant to kickstart your bone marrow into producing blood cells again.
The transplant itself is not therapy. The high-dose melphalan is. If you don't do that, you don't need a transplant.
None of this means, by the way, that you HAVE to do the high-dose melphalan/transplant after the CyBord therapy. But a lot of myeloma specialists, maybe even a majority?, will recommend that you do. It's an open question these days, though, whether or not a transplant right after initial therapy with a treatment like CyBord is truly beneficial.
The transplant itself is not therapy. The high-dose melphalan is. If you don't do that, you don't need a transplant.
None of this means, by the way, that you HAVE to do the high-dose melphalan/transplant after the CyBord therapy. But a lot of myeloma specialists, maybe even a majority?, will recommend that you do. It's an open question these days, though, whether or not a transplant right after initial therapy with a treatment like CyBord is truly beneficial.
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JimNY
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