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Sunday, August 26, 2012

Dinner with Michael

Last night, Gretchen and I had the pleasure of meeting fellow MM patient, Michael, and his wife, Wendy, for dinner in Kennebunkport, Maine.  They live on Long Island and both work in the City.  They were finishing up a week's vacation in Maine.  One of the highlights of their trip was running into George and Barbara Bush at lunchtime yesterday.  While that was surely a lot more exciting than meeting us for dinner, we had a pleasant evening nonetheless.  We had a delightful meal on the ocean, and we had good conversation sharing stories of our respective battles with MM.

Michael had been diagnosed with smoldering myeloma about three years ago.  After a surviving a serious, near-fatal bout of meningitis, he was finally diagnosed with full-fledged MM late last year.  At the age of 51, he is too young to have this disease!  It's not fair.

As I have reported before, Michael then started on the same MLN9708 clinical trial that I was on, but unfortunately, he has not been as lucky as I have been.  He is one of the few patients who did not achieve a good response.  He has been on 8 cycles of the MLN9708 (or should I now say ixazomib?), but his M-Spike has been stable for the last 3 cycles.  He is now wrestling with the decision as to whether to continue the current protocol and hope things don't get worse or switch to a new drug combination (cytoxan, Velcade, dex).  He will make his decision soon, and he seems to be leaning toward making the switch.  He and I will continue to stay in touch and I wish him all the luck in bringing his MM under control.  We look forward to meeting with them again, perhaps next time in New York.

We go in to DFCI tomorrow for me to get some tests and to begin my maintenance therapy, which will consist of 10mg of Revlimid daily for the first three months, and then 15 mg/day thereafter.  I found out that they plan to do another bone biopsy tomorrow to see where I am after all this treatment.  That should be tons of fun.  At the very least, I hope the biopsy results will show that the MM has not gotten any worse.

From now on, I may only have to go back into DFCI once a month to have my blood checked and get my IV infusion of the bisphophonate, Zometa.  That will be a nice change!  The plan is to continue the maintenance therapy on this clinical trial for three years or until relapse.  I hope it's the former.

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