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Friday, June 21, 2013

Belated Update

There hasn't been a lot of exciting developments lately, so I have been a bit lax in updating my posts.  I did go to the Farber last week and got some more good news about my continuing remission.  My numbers all looked good.  There was a time when that would be an occasion for celebrating, but things have been dormant for so long that I've almost come to expect it.  I really need to remind myself that every month of normal results is a gift, especially with this disease.  Except for tiring easily, I'm feeling great!  I have minimal side effects from the daily Revlimid dose and monthly Zometa infusion, so I have nothing to complain about.

One piece of good news is that I don't have to provide a 24-hour urine sample every month any more. Whoopeedoo!  The clinical trial protocol that I am on only requests urine samples every 3 to 4 months.  Guess which one of these options I'm going to choose.  I still have to take a few immunization shots to restore my immune system to normal.  Last week I got a Hepatitis shot.  In September, I will get another battery of shots (5 or 6), but after that, I should be OK.  I still have to take the Zometa bisphonate shots every month until next March, but after that, they will reduce it to once every 3 months.  Then, if I am still in remission, I can go off all medications, including Revlimid, by August 2015.  That would be nice.

There was a recent article in the June issue of Clinical Oncology, which I subscribe to, which showed that "Minimal residual disease (MRD) assessed by multiparameter flow cytometry (MFC) is a strong tool for predicting treatment (particularly ASCT) outcomes in patients with multiple myeloma."
  J. Clin. Oncol. 2013 Jun 03;[EPub Ahead of Print], AC Rawstron, JA Child, RM de Tute, FE Davies, WM Gregory, SE Bell, AJ Szubert, N Navarro-Coy, MT Drayson, S Feyler, FM Ross, G Cook, GH Jackson, GJ Morgan, RG Owen. 

That's good news for me, of course, since I had no MRD in my MFC after my ASCT.  However, there have been lots of recent news about good results for newly-diagnosed MM patients who received the new therapies and didn't receive stem cell transplants (ASCT).  Those who achieved Complete Response (CR) or better did just as well by postponing until first remission as those who did an early transplant.  The one issue that concerns me is what about those who are high-risk with adverse cytogenetics like me?  Most of the other clinical results that I read about don't distinguish high-risk versus low-risk results.  However, this article dealt with that issue, "This predictive value was seen in patients achieving conventional CR as well as patients with favorable and adverse cytogenetics."  That was encouragingI would like to see more research on how those of us with adverse cytogenetics respond to various courses of treatment.

In the meantime, I think Dr. Richardson's approach of hitting it as hard as you can up front may be especially helpful for those of us with high-risk MM, where abnormal genetic mutations are likely to occur at a higher rate than those with low-risk disease.  I would like to see more research differentiating between low-risk and high-risk MM.  Anyway, I found this article comforting.

Last year at this time I was recovering from my ASCT.  For the first time in 20 years, I had to drop out of the annual Block Island Race Week sailing regatta.  This year, however, I'm doing great, so we are doing it again!  I leave tomorrow for the week.  Most of the crew are alumni of either The Coast Guard Academy or MIT or both.  Except for my son, Jeff, and another crew member's son, Chris, I am the youngest of the 10-man crew.  The rest are in their late 70's, but they are a skilled and wily bunch, so I think we have a good chance against the other young whippersnappers with whom we will be competing.  We have chartered a 48-foot Swan, Dreamcatcher.  We've chartered it before and it is a great boat.  We will be competing in the non-spinnaker class with about 7 other yachts.  It should be exciting.  For anyone who wants to follow our progress, here is a link to the Storm Trysail website,

While I'm gone for the week, Gretchen will be on her own.  She has now survived 4 months after her surgery without any seizures, thank goodness.  Her neurologist told her not to drive for 6 months, but that has been a huge burden for us both.  Recently, she has started driving on her own for short trips, which I think is fine.  Here's the deal:  her neurologist told her there is a 20% chance of a seizure in the 1st 6 months after a craniotomy, but the probability decreases exponentially after the operation.  I tried to figure out the odds, but it seemed too hard. But Ken, a high school friend of mine, a Penn State graduate, sent me a solution.  Either he is smarter than I am or Penn State has a better math curriculum than MIT, whatever, but he showed me that after 4 months, the probability of a seizure had dropped to about 4%.  (Thanks, Ken.)  At this point, I think the risk of Gretchen's driving are now minimal, so I think it's OK for her to drive herself wherever while I'm gone.  It still would be a good idea for her to stay off main highways for a while, just in case.


  1. Hi Bill - It's great to hear that you are doing well. Good luck with the sailing race.
    Mike from NY

    1. Thanks, Mike. I hope you are doing well. I hope we can meet again for lunch or dinner sometime soon. Bill