IMF Support Group Leaders Summit – Dallas, Texas (Part Three)

Sunday morning featured a wide array of medical and practical information–sort of a “shot gun” approach.  I used a similar style in yesterday’s post about the Support Group Leaders‘ Summit in Dallas. So here are some important points that a variety of speakers made Saturday afternoon, evening and Sunday morning; including the long awaited hint from Celgene about progress they insist they are making to help cure multiple myeloma. Let’s start with something a bit frivolous.  Anyone else wish we could “dump” the name multiple myeloma and simply call it bone marrow cancer? I brought that up and saw a lot of nodding heads… No, it’s not skin cancer!  Myeloma isn’t melanoma–although I’ve had that, too! Diagnostics and imaging came-up frequently this weekend.  MRIs are a great way to go–as long as they are done without contrast.  Contrast is contraindicated in multiple myeloma patients, unless it is an emergency and imaging doesn’t work without it. Skeletal surveys continue to be the imaging “standard of care” for multiple myeloma.  Cheap and effective–but only if there is serious, pre-existing damage.  I will review more about diagnostic imaging sometime soon. The IMF Working Group is determined to force universal acceptance of new drugs. Members of the group are frustrated that a drug is approved in one country but not another. Since patients are living longer, so the need to manage plasma cell leukemia and EMP plasmacytomata (soft tissue myeloma tumors) are more important than ever.  Remember what I wrote yesterday? Occasionally patients that have been receiving chemotherapy over a long period of time can develop MDS or plasma cell leukemia.  If the a patient isn’t a candidate for a stem cell transplant, CyborD (Velcade, Cytoxan and dex) is very good treatment for plasma cell leukemia. Moving on, apparently Dr. Durie, has “seen the light” and has found nutrition!  I believe he is ready to concede that there is a nutritional component to multiple myeloma–and he is starting to write about it. Here’s a link to Dr. Durie’s recent article from the IMF’s Myeloma Minute newsletter:

CAN COOKIES CAUSE MYELOMA?

Two days later, I wrote a post about the exact same topic on this site:

Proof of nutritional link to multiple myeloma?

I wrote my post before I read Dr. Durie’s article.  HONEST!  Doctor and patient.  Both picked-up on the apparent link between the chemical, acrylamide, and an increased risk of developing multiple myeloma. A causal link between nutrition and multiple myeloma.  Now that’s big news! Want to hear about what I consider to be even bigger news?  You know, a nugget of precious, newsworthy info a journalist always hopes to discover at conferences like this one. At the end of his presentation Saturday, Chad Saward, Senior Advocacy Manager for Celgene, quietly shared that Celgene has discovered a compound that is able to reverse drug resistance of myeloma cells in the lab, making leaving them susceptible to pomalidomide therapy. He couldn’t give us many details.  I could tell that Chad was starting to realize that he had already said too much.  But before he clammed-up, he did answer a few questions about this promising new discovery. Yes, it worked well–but only in the lab so far.  No, it didn’t seem to help break-down drug resistance to other existing myeloma therapies–only pomalidomide. But Chad did admit that human testing using the new compound could begin as early as next year. Now that’s exciting! Earlier today, I shared my news with my good friend, Richard, a fellow myeloma patient and co-founder of our Nature Coast Multiple Myeloma Support Group.  As I described how I believed the new therapy might work, Richard cut-me-off and said “That’s the cure!” And somewhere down the line, it may turn-out to be just that.  But there are so many obstacles to be overcome–and questions to be answered–before anyone can use “cure” to describe this or any other new therapy. Will it work in all patients, or only a few?  How long will it be able to hold-back a patient’s myeloma?  A few months?  A few years?  Longer?  And what if pomalidomide doesn’t work well in a patient to begin with.  Will this new compound enable pom to work for them, too? It almost sounds too good to be true, doesn’t it? But even if it only turns-out to be a good first step, a breakthrough like this could forever change the way researchers and doctors approach myeloma therapy. HEY!  A guy can dream, right!  And aren’t we all long overdue for some really good luck? Feel good and keep smiling!  Pat