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Re: New poster: story, and doubts about Zometa

by Beacon Staff on Sun Dec 21, 2014 8:11 pm

For those interested in a summary of the the IMWG consensus statement that JimNY mentioned in his posting, there is a Beacon news article about it:

"New Recommendations Issued On Stem Cell Collection And Treatment With Revlimid, Thalidomide, And Velcade," The Myeloma Beacon, Oct 22, 2009.

Beacon Staff

Re: New poster: story, and doubts about Zometa

by mikeb on Mon Dec 22, 2014 3:04 pm

Hi Tom,

In response to your question, unfortunately I'm not sure whether the friend who I mentioned in my earlier post had taken Revlimid or not. I do know, though, that he went through multiple treatment regimens before they attempted the stem cell collection.

I hope your collection goes well. Keep us posted!

Mike

mikeb
Name: mikeb
Who do you know with myeloma?: self
When were you/they diagnosed?: 2009 (MGUS at that time)
Age at diagnosis: 55

Re: New poster: story, and doubts about Zometa

by SBarro on Mon Dec 22, 2014 8:39 pm

Greetings,

Melanie, JimNY, and Mike, thanks for your inputs and suggestions. I talked to my doctor today, and he said that he checked more into this topic of extended Revlimid use before mobilization of stem cells, but didn't find much to be concerned with. He said he never had a patient have difficulties with mobilization after undergoing extended pre-treatment like mine. Nevertheless, during our discussion, he suggested that I simply stop the Revlimid now (with three weeks left in the treatment) and continue once per week with only the Velcade and dexamethasone.

I was first reluctant to drop Revlimid, but he assured me he was comfortable with the idea. In general, his approach is to "go for the long term," but he is flexible. It seems he's willing to spend more time on pre-treatment than other doctors because he sees value in getting percent cancer levels below 5%, if possible. He said patients who have achieved below 5% have much better autologous SCT results, with longer periods of undetectable cancer levels. (Hence the "long term" approach.) I myself like this approach, and I hope and pray that I can achieve his 5% goal. But even if I cannot achieve that goal, he would still recommend me for an auto SCT.

Concerning the calcium aspartate anhydrous that I mentioned in my first post, my doctor said it "looks good" and didn't see a way that it could hurt me. So I've been on this supplement for a week now. I'll report in due time how it works out, but of course, the results may be hard to discern, as compared to the more common calcium supplements (with vitamin D).

Tom

SBarro
Name: Thomas Tonon
Who do you know with myeloma?: myself
When were you/they diagnosed?: April, 2014
Age at diagnosis: 69

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