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Issues That Matter to Myeloma Patients

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Before the official conference starts on Tuesday, I sat in several Roundtable discussions Sunday and Monday led by the IMF and consisting of 15 to 25 active participants at each session.  

Leading myeloma specialists, procedural specialists (e.g. orthopedic back specialists), and representatives from companies talked about issues important to myeloma patients.  

The roundtables were facilitated by Dr. Brian Durie with the objective of asking and answering questions associated with a particular treatment or drug.  

All the participants (including myself) are under manufacturer's non-disclosure agreements and are not permitted to discuss meeting details, but I can tell you that the vigorous discussions were "spot-on" in reflecting patient concerns.

For example, in the Medtronics meeting (kyphoplasty), I saw how experts are trying to answer questions and update guidelines on kyphoplasty usage.  For example: 

1) How soon should kyphoplasty be considered for back pain classified as severe versus significant versus tolerable?

2) How does treatment and safety effectiveness of kyphoplasty compare with vertebroplasty and non-surgical management of back pain? 

3) What are the best imaging techniques (bone survey, MRI, PET and CT scans) to determine treatment decisions while considering insurance reimbursement?

Roundtable meetings with Celgene (Pomalidomide, Revlidmid, Thalidomide) and Onyx (Carfilzomib) reaffirmed good clinical trial results presented at ASH'10 last December and plans for additional trials.  These trials are necessary to answer questions about drug efficacy and safety profiles for usage in patient settings refractory/relapsed, first-line usage and maintenance.  Dosage amounts and scheduling, treatment duration and response, progression-free survival & overall survival, and combination treatments were all areas of discussion in these roundtables.

Finally, one other meeting took place early Monday morning -- that of the International Myeloma Working Group (IMWG).  This is a group over 150 leading myeloma experts worldwide (seemingly all of the "heavy hitters" from what I could tell) who tackle projects and publish papers on subjects that help our local oncologists as well as patients.  You can find published papers at www.imwg.myeloma.org on such topics as allogeneic stem cell transplants and peripheral neuropathy.  Future papers may include recommendations and/or guidelines on topics such as maintenance and high-risk treatment.  

I, for one, will be watching this site more carefully.

It was such a busy day, and yet the actual International Myeloma Workshop officially kicks off tomorrow (Tuesday). 

Whew!

 

4 Comments

Thanks Jack - you've managed to give us lots of information to look forward to even before the actual Workshops begin!

It's so great to get this information first hand and from a patient's perspective!

Jack, Looking forward to reading your blog each day. Thanks

Thank you, Jack. This is really helpful. Wish I were there!

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This page contains a single entry by Jack Aiello published on May 2, 2011 3:44 PM.

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