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Tuesday, May 15, 2012

Continued Progress

The various supplement and emollient therapies I have been using for my peripheral neuropathy seem to be working their magic.  My symptoms have diminished noticeably, especially when I go to bed at night after applying the cocoa butter to my feet.  It's very soothing.  

I went into DFCI today for blood tests and to meet with the medical team.  My blood counts continue to show improvement.  The only number that went down was my White Blood Cell count, but nobody seemed concerned about it.  Everyone thinks I'm doing great, and therefore so do I.  I thought I was going to get a lot of tests to re-stage my status, but they don't think I need to do that.  Not that I will miss having a bone marrow biopsy taken, but I was curious as to whether I have achieved a stringent Complete Response from the stem cell transplant.  However, I'm not going to lobby aggressively to have them stick a big needle my hip bone to find out.

I'm good to go for starting my consolidation therapy next week (May 22).  I also found out some good news I wasn't expecting.  The clinical trial I am on will pay for all the drugs I will be getting, including the Revlimid!  That's really great, especially since I'm supposed to take Rev for the next 3 years.  Even with Medicare picking up a huge chunk of the costs, that will save us a lot of $$.  I think I'm going to stick with this clinical trial.

Speaking of Revlimid, I broached the secondary cancer issue that I mentioned in my last post to Dr. Richardson.  He explained that the FDA announcement did not take into account some of the important variables in the studies they reviewed.  In particular, most of the patients who showed increased second cancer risk had taken heavy duty chemotherapy drugs in addition to the Revlimid.  He contends that this combination is what increases the cancer risk, not the Revlimid alone.  Based on the minimal chemotherapy I have taken (one dose of cytoxan and 2 doses of melphalan), he thinks my chances of a second cancer are no more than 3 or 4%, not the 8% referred to in the FDA release.  This number is the typical risk of second cancers for all Multiple Myeloma patients.  As usual, he seems to really know of what he speaks, and he allayed my concerns greatly.

My schedule for the next three months is pretty full, since I will have to go into DFCI for Velcade infusions twice a week (Tuesdays and Fridays) for two weeks out of every three for the next 12 weeks.  Projecting the schedule out, there were a few conflicts that I wanted to deal with.  There are three time periods that I would like to have free:  the week of Tuesday, June 19 (our 25th anniversary), the week of July 4 (to visit the farm in New York), and Friday, August 3 (my niece Meghan's wedding in PA).  Unfortunately, the schedule works out so that none of those weeks corresponds to one of my weeks off.  Ratsafrats!  Therefore, I have to resort to creative scheduling.

For our anniversary week, Bermuda just won't work.  That's really OK, since it would be really expensive, and Gretchen and I both agree that we should save our trips to warm places for the winter time.  Gretchen suggested we go to Niagara Falls instead.  I thought that was a great idea, since I've never been there and it's on my bucket list anyway.  Therefore, I will schedule an early morning appointment at Dana Farber on Tuesday, June 19.  Then we will take an afternoon flight to Niagara Falls and return on June 21, so I can be at DFCI on Friday the 22nd.  Serendipitously, JetBlue is offering a special $49 fare today only from Boston to Buffalo!  I booked it tonight, so that problem is solved.

Since July 4 is in the middle of the week this year, I will just plan to be at the farm over the weekend before (or after) instead of during the week.  As for Meghan's wedding, I will work to move the scheduling of the fourth consolidation cycle to Monday-Thursday instead of Tuesday-Friday, so we can leave for Pennsylvania on Thursday, August 2, and be there for the wedding.  Muriel agreed today to try to accommodate these changes, so we should be all set.

It's all good.


  1. Wow! Sounds like you have (most of) your life back. Have a ball!