Fear

EdsBarb
EdsBarb Member Posts: 5
edited March 2014 in Multiple Myeloma #1
Anyone out there have good news about Myeloma?

Comments

  • janec
    janec Member Posts: 4
    #2
    I was diagnosed in Mar 06, have had chemo,kyphoplasty on some vertebral fractures, stemcell transplant, am currently on revlimid maintenance. EVERY myelome specialist I have been to has said what an incredible time it is in myeloma research, that the life expectancies of 29 mos that you see in some publications are based on VERY old outdated data, and that the ones reported last year are also outdated, that very rich and fruitful research is happening in many places with many incredibly smart specialists. That it may soon be characterized as a chronic disease. I frequently visit the multiple myeloma research foundation website, and get regular updates from this org. Each update includes abstracts of hot-off-the-press research, most of which I cannot understand, but are strangely comforting.
  • ned82063
    ned82063 Member Posts: 1
    #3
    janec said:

    I was diagnosed in Mar 06, have had chemo,kyphoplasty on some vertebral fractures, stemcell transplant, am currently on revlimid maintenance. EVERY myelome specialist I have been to has said what an incredible time it is in myeloma research, that the life expectancies of 29 mos that you see in some publications are based on VERY old outdated data, and that the ones reported last year are also outdated, that very rich and fruitful research is happening in many places with many incredibly smart specialists. That it may soon be characterized as a chronic disease. I frequently visit the multiple myeloma research foundation website, and get regular updates from this org. Each update includes abstracts of hot-off-the-press research, most of which I cannot understand, but are strangely comforting.

    I was diagnosed 4 months prior to you with stage 3 MM. Our disease and treatments are incredibly the same. My cancer was brought under control with Thalomid and Dexamethasone prior to having a stemcell transplant. The transplant failed after 1 year and now the Myeloma is being maintained with Relimid and Dexamethasone. I have had Kyphoplasty on 1 of the 5 vertebrae that have compression fractures. At diagnosis I also had 3 fractures in my ribs and lesions from top to bottom. that is currently being treated with a bisphosphonate called Aredia. I have very little side effects from the Revlimid except for some fatigue.
    What i really wanted to let you know is that my local oncologist and all my doctors at Johns Hopkins in Baltimore have been telling me the same thing about life expectancies and the advances in treating this disease. My brother is a perfect match for a bone marrow transplant if needed, but lets just keep praying that they find a cure for this terrible disease. By the way I was just 43 yrs old at the time of diagnosis. Hang in there !!!
  • mm40irish
    mm40irish Member Posts: 3
    #4
    ned82063 said:

    I was diagnosed 4 months prior to you with stage 3 MM. Our disease and treatments are incredibly the same. My cancer was brought under control with Thalomid and Dexamethasone prior to having a stemcell transplant. The transplant failed after 1 year and now the Myeloma is being maintained with Relimid and Dexamethasone. I have had Kyphoplasty on 1 of the 5 vertebrae that have compression fractures. At diagnosis I also had 3 fractures in my ribs and lesions from top to bottom. that is currently being treated with a bisphosphonate called Aredia. I have very little side effects from the Revlimid except for some fatigue.
    What i really wanted to let you know is that my local oncologist and all my doctors at Johns Hopkins in Baltimore have been telling me the same thing about life expectancies and the advances in treating this disease. My brother is a perfect match for a bone marrow transplant if needed, but lets just keep praying that they find a cure for this terrible disease. By the way I was just 43 yrs old at the time of diagnosis. Hang in there !!!

    ned just wondering how you
    ned just wondering how you are getting on as I am about to undergo second auto transplant I got 2 years out of my last and then 2 years out of revelimid plus steroids. I recently had 4 cycles of valcade and all tough i know of 3 people who have done v well with this treatment it has only stabalised my para proteins so now I am penciled in for 2nd auto in 5 weeks, plus possible mini allo in about nov depending on results. anyone out there who underwent allo transplant I would love to hear from esp g v host effects. general info/ I am now 40 I was 35 when diagnosed female I have come through a lot with bone pain and damage before I was diagnosed but I presently feel well am walking fit and altough stressed and tired i feel no i'll effects at moment my bloods are presently above the 20% para proteins.

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