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Sunday, September 25, 2011

Another compatriot

Yesterday I played in a Teamsters golf tournament with my friend, Bobby.  (Don't ask how we did.)  Ed, one of the organizers of the tournament whom Bobby has known for years, didn't look quite himself, so Bobby asked his wife if he was OK.  Turns out he has Multiple Myeloma.  I guess the disease isn't so rare after all.

I had a chance to talk with Ed briefly.  He was diagnosed about a year ago,  As was the case with Chuck, he first noticed the effects of MM when he discovered that three of his ribs had broken.  Ed is seeing one of Richardson's other colleagues at DFCI.  He is just about to have an autologous stem cell transplant (ASCT).  The day before the tournament, he had gotten his first dose of heavy chemo to kill all the bone marrow cells.  When he took off his hat, he had already lost most of his hair overnight.  He will spend 3 weeks or so in the hospital undergoing this procedure.  This is not for the faint of heart.  I plan to keep in touch with Ed and see how he is doing.

When and if to schedule ASCT is one of the big decisions I may have to make in the near future.  I am hoping that I can continue on my induction therapy if it seems to be effective, and then move into a maintenance mode until a relapse sometime down the road.  However, I'm getting a little long in the tooth, and they don't like to do ASCT much after the age of 70, so there might be an argument for me to do it sooner rather than later.  I don't know.  I expect to start having this discussion with Dr. Richardson on Tuesday.

While perusing the Internet today, I came across a good blog from another MM patient, Pat Killingsworth.  He contracted MM in 2007 at the age of 51.  Pat then went through the same dilemma I may soon go through in deciding whether to get a stem cell transplant.  He elected not to, but this year, he suffered a relapse, so he had the ASCT this past summer.  One of his blog entries is particularly interesting, as it focuses on providing basic information for newly-diagnosed MM patients.  I thought I would share this with you, since it is a straightforward discussion of a highly technical and confusing topic:

I hope you find it informative.

By the way, my blood tests from last Tuesday all have come back.  I'm not quite sure how to interpret all of them, but I noticed that my total protein is down to the lowest level since I started at 5.9 g/dL.  My albumin has been hanging steady near the bottom of the normal range at 3.7 g/dL, but my globulin level has dropped from 2.8 to 2.2 g/dL since Aug. 30.  My hope is that this reflects a further reduction in my M spike, which was 0.41 g/dL on Aug. 30.  Of course, I won't know until my SPEP tests come back late next week, but I'm hopeful!

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