Multiple Myeloma Support Group

I don't know anything about "poor risk" myeloma, but I wouldn't rule out all clinical trials. I was part of one after I was first diagnosed and my numbers came way down. In fact, my numbers were so good that I got to postpone my transplant for a year.

i would make sure you get to a specialist center for multiple myeloma. There they have the state of the art treatments. I do not know where you are located: Northwestern univ chicago, il Dr. jayeesh mehta and semgha sengi, Mayo clinic in mn, md anderson in texas, dr barlogie in arkansas, there are also ones in boston and ny can think of all there names. With poor risk disease i would make sure you are with a specialist...there are newer treatments that are verfy effective.

tammy

Hi Myrna,
I feel for you and will tell you keep at it. I, like you have high risk and have 2 deletions. p53 gene deletion(17p13) and 13q(13q14-)

Initially Velcade and Dex were tried, helped a little. Then Velcade,
Doxil, Dex. Again helped somewhat. Lastly Velcade, Dex, and
Revlemid. Revlemid gave the #s to get the sct. which I had in Nov.
of last year.
Finally at the end of May my m-spike was negative.
I will be having another bone marrow biospy to see what the plasma cell count is showing.

I'm now taking 10mg Rev for mtce.

Have you tried Revlimid?

The Best To Ya,
fritz

Rich, you say your numbers were so good that you put off act for a year. What treatments or maintenance doses did you have during this year?
Ken
Ft Myers, FL

Thanks for feedback! My husband has been on revlimid since last July. We tried a clinical trial from July to December last year. His lowest numbers were in sept, then they started climbing up again. We are getting ready to join the carfilzomib trial now. We've doctored at John Hopkins for the last year & now have moved to University of Maryland. I've researched dr barlogie at univ of Arkansas a lot and MD Anderson in Texas, they are both so far away though. Sometimes i feel like the doctors are salespeople for their specific clinical trials & thats it! I'm trying to stay positive & remember we are only one of many patients but my husband is my number one priority.

During that year, I was on Revlimid 15 mg. , that was it. After that year my numbers started going up a little, so I couldn't be part of the clinical trial any longer. That's when they started planning my transplant.

Rich, Dr. Barlogie is my oncologist. I can highly recommend him and the Myeloma Institute for Research and Therapy (MIRT) at the University of Arkansas for Medical Sciences in Little Rock (www.myeloma.uams.edu.). The doctors at MIRT do not try this and that. They know how patients will respond to treatment. I have seen miracles there. Please go to see him ASAP.
Dr. Barlogie is a maverick, but his success speaks for itself. For more information, please email me at magic.carpet.ride (at) me.com.

My Husbands was a Clinical Trial.... And he has done great...... No Chemo now and back to feeling great......and his number are also great.