Friday, January 8, 2016

Wall St. Journal on Myeloma

First of all, my apologies if you are concerned because I haven't posted anything in a long time.  For the purposes of this blog, you my assume that no news is good news.  I think I communicate with most of you on other forums, so I'm hoping it comes as no surprise that  I'm doing great.  The myeloma remains in remission. My number continue to be good.  And while the word "cure" is not one typically associated with this disease, there is no evidence of any bad cells floating around in me.  So..as long as what caused it to happen doesn't cause it to happen again, I'm in good shape.

As of now, I'm on 10 MG Revlimid and 25 mg Prednisone.  For those of you in the know, 10 mg is still a therapeutic does of Revlimid and Dr. V admits that he is being somewhat aggressive with my treatment.  He did agree to reduce it from 15 MG when I complained of some digestion issues.  The Prednisone is a welcome alternative to the more commonly used steroid, Dexamethasone.  It is much easier to take as it does not have the wired/tired extremes associated with Dex. It also doesn't make me into a raging manic (which Dex does) and it doesn't seem to affect my appetite.  Aside from the digestion problems, which have not dissipated with the lowered dose, the only real side effects I am aware of are occasional cramps in my hands and feet.  But they are infrequent and mostly tolerable.    All in all, I'm very pleased with my state of affairs.

This week, the Wall St. Journal printed a very well written article on Myeloma.  Accompanying the article is a video with most of the same info that I just stumbled across from 2013.    I'm providing links to both here.

VideoArticle

In the video, Dr. Brian Durie, whom you may recall was the 'tie breaker" when I was trying to decide on whether or not to have a stem cell transplant,  says two interesting things:

  1. 1) Average life expectancy is now up to 7 years (from diagnosis, I presume) .  As for me, I was diagnosed in July 2006, so I'm approaching 10 years.
  2. 2) He expressed optimism that a "cure" is actually achievable.  The "C" word is being bandied about now by the two research based foundations that focus on the disease, and by some of those who treat the disease, most notably the ones currently or formerly associated with the UAMS Myeloma Institute who promote a Total Therapy program which I describe as a "kitchen sink" approach intended to wipe out the disease in their patients.  

My transplant was on February 7, 2012, so my 4th birthday is coming up in less than a month.  I feel good and extremely grateful to be where  I am



17 comments:

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  8. Hey Ed! No news is good news? Since you haven't posted in while, I am hoping that all is well with you.

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    1. Hi, Sheri! That's right. I'm doing fine and no news is indeed good news. Thanks for checking in. Hope all is well with you!

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  9. Read my first MM blob tonight. My name is Kent. Diagnosed with Multiple Myeloma in May 2014. Currently in remission (2.5 yrs) and take Velarde shots twice a month as maintainance. My stem cell transplant was in 10/14. Initially took valcade, revlimid and dex for close to four months-- took me to remission. Interested in you because you have been in remission for close to 10 years. Is MM ever not close to mind? I'm guess I'm waiting for the other shoe to drop. Hope you continue to feel OK

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  10. Hi Ed, I am Northrop Space Park Employee, I was diagnosed with MM in February of this year. Getting treatment in Kaiser WLA(Had 4 cycles of Velcade shots, 4 rounds of 14 Revlimid pills and DEcadron)
    Kaiser wants me to do Stem Cell Transpalant at city of Hope,
    it it a good idea?
    thanks

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    1. Probably. But there is a lot to consider, obviously. Let me know if you want to talk about it. Happy to share my experience. Send me your contact info.

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    2. Tsirlin@gmail.com, 310 3519742 cell
      I am only 44, having 2 little kids there is really hard to do transplant this summer, like Kaiser wants

      Thanks

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