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Sunday, December 15, 2013

Patient Symposium

Yesterday I attended the annual MM Patient Symposium at the Farber.  As usual, it didn't disappoint.  The Farber staff updated us all on the latest developments in the battle against MM, including the latest results from the ASH meeting last weekend in New Orleans.  There were a lot of encouraging developments that I would like to share with you.

But first, I want to talk about the people I met at my table.  Tom sat next to me, and his wife was in Brigham and Women's Hospital (BWH), having just got her ASCT on Tuesday.  He was from upstate New York (Lake George) and was staying here while his wife went through this ordeal.  She was recently diagnosed last summer, and she also shares my t(4;14) high-risk factor.  We talked about how scared she is and all the bad stuff she reads online about how little time she may have to live.  He was really upset that she is terrified about what she's read on the internet and worries that she won't be alive to see her newly born grandson learn to walk.  I told him to tell her that as long as she's on Velcade, her worries are overblown.  "Look at me", I said.  "I'm going on over 2 and 1/2 years, in remission, and doing great."  I suggested that she ask her doctor (Schlossman) about his prognosis.  I guess she's been afraid to ask the question up to now.  I told Tom that Paul Richardson told me on my first visit that I would live into my eighties.  She needs to think positive!  I directed him to my blog to share with her.  I hope she finds encouragement from my experience.

Then there was this delightful couple from Worcester, Betsy and Joel.  They were there because their 22-year old son, Ethan, a senior in college, was just diagnosed in July with MM.  Really!  He in undergoing the usual RVD induction therapy and is scheduled for a stem cell transplant next month at BWH.  I think it sucks that I have MM, but come on now, for a young kid like that to have MM,  that's beyond the pale!  Betsy and Joel were very concerned about the ASCT and wanted to know what my experience was like.  I shared my story and told them how great BWH is and that I had no problems at all.  I also reassured them that this should be a piece of cake for someone as young and strong as he is.  I also shared my blog address with them so they could check out my experience.

Today I got an email from Betsy.  They checked out my blog and found that they had already read some of it!  As it turns out, Ethan was very ill with Lyme disease several years ago, and they thought that somehow the Lyme disease might somehow be related to the MM.  Join the club!  They had asked Schlossman about the potential relationship between Lyme and MM.  His response was that that question has been raised but there is not enough data to validate it.  It's interesting that this interaction seems to come full circle.  The Lyme/MM connection just doesn't seem to want to go away.

I have lots of notes from yesterday's session.  There are great results from continuing clinical trials with Kyprolis, Pomalyst, and MLN-9708, as well as with monoclonal antibodies (elotuzumab, daratumumab) and HDAC inhibitors (panobinostat) .  Recent advances may lead to potential immunization therapies in the future.  Research also continues to connect genetic profiles with potential treatment regimens, with the goal of providing individualized treatments.  These latter developments may be years away, but in the meantime, the multi-drug therapy options continue to expand and show dramatically improved results for both newly-diagnosed and relapsed patients.  It's a very promising landscape for future treatment options.

I'll expand on some of these in a future blog post unless I forget.  You know how it is at my age.


  1. Wonder if he is iga also..and if that relates directly to Lyme..since we are both it ok if I share this link with Lyme group with thousands members..if it got out that Lyme can cause mg US or worse mm..wonder if a western blot should be routine worup with mm specialists...I saw Dr. B lecture in ny few months ago and I asked him about the relationship Lyme and mm and he said it wouldn't surprise him at all

    1. That's a good Lyme more likely to trigger IgA type MM than IgG? By all means, feel free to share this link with your Lyme group. I think the more exposure this topic gets, the better chance there is to get some real answers.