Hi, This question is for Dr. Siegel, I'd like another point of view. I was dx stage 3 multiple myeloma igA kappa with del. Chrom. 13. in 10/09. I had 8 rounds of Velcade/dox/.dex before ASTC 6/10. I have been lucky enough to be in remission since. I was on 10 mg rev maint, but they had to lower it to 5 mg because of low platelets. My current Onc/ Hematolgist says enjoy your remission, and we'll talk about the future treatments when we have to. I'm wondering if this is the time now to visit a multiple myeloma specialist, and talk about when the time is to restart any treatment. I guess I'm worried this is too good to be true, and I want to be prepared with a plan to use when needed. Should I just enjoy this treatment vacation, or get a plan ready first. My Onc. is wonderful, but he does admit he is not a multiple myeloma specialist.
Thanks, Carol
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Re: need for future treatment plan?
Was the Chr 13 by FISH or cytogenetics? If it was by FISH alone it doesn't mean anything. Remissions post transplant can sometimes last for a decade(s).
I would approach things exactly as your oncologist has (except that unlike most of the multiple myeloma world, I am not a huge fan of this kind of maintenance therapy). The art is knowing when to start or change treatments. Unfortunately there are no hard and fast rules. If your disease is hurting you, it is usually time to treat. If it is not, the timing of re-treatment can be a matter of opinion. Certainly if disease is progressing rapidly you don't want to wait until something bad happens.
It is hard to make plans as to what treatment you should get at relapse as hopefully we will have more drugs and more smarts by the time you need treatment.
In terms of seeing a "specialist", I doubt they are going to tell you anything earthshaking at this time. The reason to go see one now would be more to get him or her as part of your "team". It might be an opportunity to identify someone that your local onc can be comfortable discussing your case, who will be more familiar with the details and can offer a more informed opinion when necessary.
I would approach things exactly as your oncologist has (except that unlike most of the multiple myeloma world, I am not a huge fan of this kind of maintenance therapy). The art is knowing when to start or change treatments. Unfortunately there are no hard and fast rules. If your disease is hurting you, it is usually time to treat. If it is not, the timing of re-treatment can be a matter of opinion. Certainly if disease is progressing rapidly you don't want to wait until something bad happens.
It is hard to make plans as to what treatment you should get at relapse as hopefully we will have more drugs and more smarts by the time you need treatment.
In terms of seeing a "specialist", I doubt they are going to tell you anything earthshaking at this time. The reason to go see one now would be more to get him or her as part of your "team". It might be an opportunity to identify someone that your local onc can be comfortable discussing your case, who will be more familiar with the details and can offer a more informed opinion when necessary.
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Dr. David Siegel - Name: Dr. David Siegel, M.D., Ph.D.
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