[Carol of Eden]

Re: Newly diagnosed and confused

by Carol of Eden on Sat Nov 08, 2014 1:39 pm

Hi Edward,

If you find you are leaning toward having a stem cell transplant, you may want to think about the practical / financial arrangements of your choice of care center. If Sutter Health does not do them (there are certain centers for them, which I am sure is appropriate for the necessary level of expertise). Do you know where would they have it done?

I am in the smoldering myeloma stage so have not had a SCT yet, but have read of many other peoples' experiences. Most centers seem to do them in-patient but some are outpatient. If outpatient, there will be a serious need for you to have a full-time caregiver during the transplant process and recovery period, which is many weeks (and can be longer if you have complications such as infection). Some doctors and centers seem to be more strict in their requirements to verify your caregiver status. There will be some need for a caregiver after leaving the hospital, either full time or at least on call.

I'm no expert, so I could be a little off on some of these details, but this is a subject you may wish to think of too in your choice of treatment location/doctor. The expense seems to not be covered by health insurance, so if you don't have an available spouse or friends who can trade off (harder if they send you somewhere farther from home) that could be a burden.

I totally agree with Multibilly that you should see an multiple myeloma specialist, at least for a second opinion.

Factors such as the cytogenetics of your plasma cell clone ( i.e.diffuse tumor) will help stratify your risk level (for success/relapse/long-term survival) - this is usually determined with a "FISH" test on the bone marrow biopsy material, and takes longer than getting back the % plasma cell results. But your risk profile could have some affect on treatment, especially on whether to have "maintenance" chemo after a SCT.