Beth Morgan Multiple Myeloma Treatment Blog
My life as a myeloma patient for almost two decades
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Subject: Co-pay assistance for patients with Multiple Myeloma
Message: Beth,
I just wanted to shoot you a quick message to let you know about our
organization. Patient Access Network Foundation provides co-pay
assistance for medications to insured patients who cannot afford the
co-pays for their treatment. We currently have 20 disease funds
including Multiple Myeloma.
Patients are eligible for assistance as long as they have insurance
that covers part of the cost of the medication, their income is below
400% of the federal poverty level, and they are a US resident.
Patients can apply by visiting our website at
www.patientaccessnetwork.org or by calling to speak with one of our
case managers at 1.866.316.7261.
If you could pass this information on to other patients you know, or
post a link in your blog, we would really appreciate it! We’re
trying to help out every patient we can, and every little bit helps!
Thanks,
Ashley Hutton
Patient Access Network Foundation
This is what Doxil does to my hands. They recover some during my time off. Sometimes there’s bleeding, and it usually hurts (but just when I bend my fingers). Someone recommended that I try New Skin Liquid Bandage, which I have. I must say, it’s smelly! Plus, when I paint it on, it stings.
In addition to the HFS (hand-foot syndrome), I also have some stomatitis. It’s not too bad, and doesn’t last very long (4 days per cycle, maybe). However, a few days ago, my tongue was actually bleeding. On the worst days, I sort of want to just keep on eating ice cream at a steady rate. I tried toast for breakfast one day, and it felt like I was chewing on razor blades. That’s an exaggeration, yes.
Here’s a link to the Doxil site’s list of possible side effects for your reading enjoyment.
No matter what this stuff does to me, it’s still better than dex!
Here’s some advice I got about Velcade/Doxil from one of the researchers involved in early trials. I thought I’d pass it on.
With the Velcade and Doxil, have they started you on oral Vit B6? When we used to run the Phase I study of that combination, we have recommended pyridoxine (Vit B6) 200 mg by mouth daily. I think this is even over the counter but you can definitely let your local doctor be aware that you are taking this. This drug is to prevent the hand-foot syndrome which is a potential side-effect of the Doxil.
There is also the risk of neuropathy with Velcade. A patient once told me that the Velcade neuropathy (which is more of pain) is different than the Thalidomide/Revlimid neuropathy (which is more of the numbness and tingling sensation). As of this time, there is no approved treatment for neuropathy or formal studies comparing all the drugs that are being used to alleviate neuropathy. We have been using either Neurontin or Lidocaine patch.