Living with MM since 2000

Started by anonymous, October 07, 2015
4 replies for this topic
anonymous

N/A
N/A
Posted on
October 07, 2015
Hello, I look upon myself as a 'lucky' MM survivor after 15 years. I assure friends I'm upright, mobile and drinking :-)) After being diagnosed in July 2000 my specialist tried chemo using a pump but my figures didn't plateau as he hoped. So I went through Aphaeresis, my stem cells were collected and frozen until needed for my SCT. In February 2003 I went though the autologous SCT, no picnic but had to be done. That process gave me five years of low figures until the MM flared again in 2008. Nearly forgot I received monthly infusions of the bone strengthening drug Aredia over the years. Then on January 2 2009 I began taking Revlimid plus Dex. I found the Dex difficult to handle, no sleep and mood swings so my specialist took me off it some two years ago, since then I've been taking Rev solo. I'm now in my seventh year all up! Your article suggesting a cure may be close is most encouraging. When I look back on my 15 years and with my current state of health in good order I also think back to my initial diagnosis of 4, possibly 5 years at best. The development of drugs to combat MM has been quite spectacular and long may it continue! BTW I turn 78 in February.
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Radioman

Member
0 Replies
Posted on
October 07, 2015
Hello, I look upon myself as a 'lucky' MM survivor after 15 years. I assure friends I'm upright, mobile and drinking :-)) After being diagnosed in July 2000 my specialist tried chemo using a pump but my figures didn't plateau as he hoped. So I went through Aphaeresis, my stem cells were collected and frozen until needed for my SCT. In February 2003 I went though the autologous SCT, no picnic but had to be done. That process gave me five years of low figures until the MM flared again in 2008. Nearly forgot I received monthly infusions of the bone strengthening drug Aredia over the years. Then on January 2 2009 I began taking Revlimid plus Dex. I found the Dex difficult to handle, no sleep and mood swings so my specialist took me off it some two years ago, since then I've been taking Rev solo. I'm now in my seventh year all up! Your article suggesting a cure may be close is most encouraging. When I look back on my 15 years and with my current state of health in good order I also think back to my initial diagnosis of 4, possibly 5 years at best. The development of drugs to combat MM has been quite spectacular and long may it continue! BTW I turn 78 in February.
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KatieL

Member
0 Replies
Posted on
November 04, 2015
Good for you! Great to hear good stories about MM patients.
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Radioman

Member
0 Replies
Posted on
November 05, 2015
Thank you Katie for your kind words. I continue to take 25ml Revlimid capsules in cycles of 21 days. No Dex! So I'm halfway through my 7th year on Rev having begun taking Rev on January 2, 2009. I continue to be in fair health, nothing too serious just old age :-)) Ken Guy Rosemount, Queensland Australia
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Will2

Member
0 Replies
Posted on
November 17, 2015
Thank you for the encouragement. I was diagnosed with Multiple Myeloma, in January of 2015. I responded well to Velcade, initially. Then, an autologous stem cell transplant in July. So far, the results look good. For maintenance, I've completed my first 28-day cycle of Revlimid (15mg), Dex (fortunately, I have no problems with this drug), and one other drug which is in a test (not yet released). I'm happy to hear that you've had 15 years of control.
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Will2

Member
0 Replies
Posted on
March 20, 2016
Update (March AD 2016): I completed 4 cycles of Revlimid, Dex, and Ixazomib (Ninlaro). Now, continuing with the Ixazomib, alone; in the first 28-day cycle. My numbers are stable.
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