[goznes]

My multiple myeloma story

by goznes on Thu Sep 01, 2011 4:29 pm

Hi-

I'm going on ten years with the disease, am 71 years young now. I've had VAD chemo, an autologous stem cell transplant, treatment withThalomid, Revlimid, and Velcade, all of which have reduced the cancer spike, especially the SCT, for 9 years. I'm wondering if at this point another SCT might be good.The issue seems to be open-ended at this time- no definitive advice.
My doctor seems to want to continue with chemo and chemo combinatyions, both recent drugs and older drugs. Combining with older drugs, I read, seems to work welI including one of the recent ones plus the older one.

I always feel dizzy, some days more than others. I've got a pain problem left over from shingles which requires me to take strong pain killers like Dilaudid/Hydromorphone, and Neurontin for the post-herpetic neuralgia.

I've also had arteriosclerosis, and take Lipitor. I read this drug is becoming over the counter so the insurance may not pay for it. Is there a prescription alternative?

I'd like to talk with anyone out there and their experiences with the disease. I think there is a spiritual dimension which allows for material losses to be put in perspective according to the spiritual life, which never leaves us. I come from a Christian/Catholic perspective.

looking forward to hearing from you.

Jim

[Susan]

Re: My multiple myeloma story

by Susan on Tue Sep 06, 2011 10:23 am

Hi Jim

Glad to hear your therapy has been so effective for 9 yrs! Has your M-spike started to go up recently that you and your doc are talking about chemo or another SCT?

[Dr. Adam Cohen]

Re: My multiple myeloma story

by Dr. Adam Cohen on Wed Sep 07, 2011 8:06 am

Jim,
You're correct that a second SCT is a potential treatment option once the disease has relapsed, and also correct that there are no definitive studies that guide exactly when in a patient's disease course this option should be considered. Factors like your age, your general health (especially heart and lung function), how long you were in remission after the first SCT, and whether your myeloma is getting resistant to other standard treatments, all are taken into account when making this decision. In general, the remission after a second SCT is typcially shorter than after the first SCT, so if the remission after the first SCT was relatively short (e.g. less than 1 year), we usually wouldn't recommend a second one. In addition, there are some new myeloma drugs available through clinical trials or (hopefully) to be FDA-approved in the next year or two that can be effective even when standard treatments have failed, so this should be kept in mind as well when considering your options.

There is no right or wrong here, but it's certainly worth discussing these issues with your oncologist, and getting a second opinion at a myeloma transplant center is always a good idea as well.

Best regards,
Adam Cohen

[Ricardo]

Re: My multiple myeloma story

by Ricardo on Wed Sep 07, 2011 9:03 am

Hi everyone,

This discussion reminded me of a question I've always wanted to ask. I'll post the question here, since it's quite relevant to Jim's original posting.

In the case of myeloma patients in their late 60s or early 70s, do physicians sometimes take into account that waiting to do a stem cell transplant several years down the road might not be an option, given the patient's age?

More specifically, do they recommend stem cell transplants earlier than they would, say, with a younger patient whose disease has progressed similar to that of the older patient?

This seems like something that would go on, but I've never heard it discussed. Has anyone had their doctor recommend a stem cell transplant in this kind of situation, or know of patients who have had stem cell transplants recommended to them for the reasons I just described?

I would think this is a relatively common issue.

Thanks!