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jengah
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| Joined: | Fri Nov 13th, 2009 |
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| Posts: | 2 |
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Posted: Fri Nov 13th, 2009 05:14 am |
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My father is 68. About 9 months ago he was first diagnosed with MM and then about a month later with MDS. It is velcade refractory myeloma in addition to MDS on the background of myelofibrosis/myeloprolierative disorder. It is not the de novo MDS.
He is with Kaiser (or locked into Kaiser I might say) in Northern California who has a reciprocal agreement with Stanford. Kaiser has a form of medicaid blended with their insurance that in most situations provides excellent care. In our case though it has restricted us.
His first treatment approach was for the MM in order to lower it enough to then go for a translpant for the MDS. In this first approach they tried:
- Lenolidomide
- Dexamethesone
- Bortezomib
- Melphalan
- Prednisone
Well, it didn't do much and so even though they found a matching donor, Stanford has turned him down since he couldn't get his levels below 5%. So, Kaiser basically said they couldn't do anything else for him. That's when I got angry!
I refused to accept this complacent attitude. I researched the best doctors, hospitals and trials in the world. Luckily we got through to a few of the best. MD Anderson has a clinical trial for MDS combining 5-azacitidine and vorinostat of which he is eligible to attend (in principle). The problem is Kaiser will not pay for it and they are not set up to accept personal payments. We offered to put up a bond to cover costs and they still said they couldn't take private payments. They aren't set up for it.
The good news is we got our doctor to talk with the MD Anderson doctor. Our doctor is now going to follow through with the azacitidine but feels combining it with any other drug woudl be too risky. Any thoughts on this???
In summary, I'm looking for any othe suggestions for treatment, other trials (I'm aware of the .gov list of trials in the U.S.), ways to get around the payment system, and any input on altnerative tratments. Also, we were considering switching to a macrobiotic diet as we have friends expereinced in cancer that swear by it.
Thanks,
Scot
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Posted: Mon Nov 16th, 2009 09:38 pm |
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Hi,
In our opinion, a patient like your father would benefit most from a reduced intensity allotransplant that would take care of both the myeloma and the MDS.
We know of no evidence that patients with less than 5% myeloma cells have a better outcome, so it's hard for us to understand why his case was not accepted.
Hope this helps,
Chat Moderator
Huntsman Cancer Institute Myeloma Clinic
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jengah
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| Joined: | Fri Nov 13th, 2009 |
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Posted: Tue Nov 17th, 2009 05:10 am |
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Hello and thanks for the reply. Where can I learn more about this procedure and what are the steps needed to get him to it.
Also - he is supposed to start on a program of Vidaza today. I believe it consists of a series of three subcutaneous injections each time.
How does this affect your approach?
Sincerely,
Scot
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Administrator
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Posted: Wed Nov 18th, 2009 09:10 pm |
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I think the best way to find out more about reduced intensity allotransplants is to talk to a doctor, especially one with experience with myeloma patients who also have MDS.
Our myeloma specialists at Huntsman Cancer Institute would certainly be glad to see your father if you would like their help.
This is the treatment route that we would generally recommend to patients in your father's situation over others like the ones you mention, but of course we would need to see your father in our clinic first before we can make any kind of official treatment recommendation. We can only speak in general terms unless we are able to see him and further examine his specific case.
All the best to you,
Chat Moderator
Huntsman Cancer Institute Myeloma Clinic
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