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A Patient in Paris

Hi Folks, 

I've returned to California and wanted to offer a few final thoughts from the International Myeloma Workshop concluded May 6, 2011. If you're a patient or caregiver who really stays current on MM developments, you might say there was not much new presented at this conference beyond the ASH conference five months ago.  The notable exceptions were:

1)    Revlimid maintenance showing an Overall Survival benefit after two years; and

2)    Secondary cancers studies of several Revlimid maintenance trials appear to add 3 to 4% to normal risk for patients getting another cancer.  This 3 to 4% number seems similar to the potential of ONJ resulting from Aredia/Zometa treatments.  In my humble opinion, the benefits of both outweigh the risks, but as patients we need to pay attention to potential side effects.

Both of these conclusions also need longer study times in order to confirm results.

Regarding new drugs, Carfilzomib and Pomalidomide continue to lead the pack in terms of safety and efficacy results from clinical trials as they progress toward FDA application for approval.  But there are many other drugs such as HDAC Inhibitors (e.g. Vorinostat, Panobinostat), Monoclonal Antibodies (e.g. Elotuzumab, CNTO328), and AKT Pathway Inhibitors (e.g. Perifosine) showing successful trial results and synergies with current treatment.

I also appreciate that safety factors, both hematological and non-hematological, are carefully measured in these trials along with response levels for different risk groups as well as patients relapsed/refractory to different drugs.

Finally, these conferences always reconfirm the complexity of MM as it's currently understood.  When MM experts disagree on "best" treatments, I wonder how we patients can possibly make best decisions? 

And then I remember that our goal is to manage our disease for as long as possible, and if a particular treatment doesn't work or stops working, we need to be ready to try another treatment.

Getting second and third opinions for MM experts can be very valuable.  However, we're the ones who need to be our own best advocates and should take advantage of the many excellent MM publications, teleconferences and on-line presentations available. 

Here on the IMF website, for example, you can already check out summary remarks and some of the actual presentations made by MM experts at the IMW workshop. You can also view the archived webcast of the IMF Journalists Workshop, which was live-streamed during the meeting in Paris, for a great overview of the event. 

Best wishes for all of our good health.



Hi Jack:
Thanks for your comments. Listening to you and the session summaries ,it is apparent that little information beneficial to patients has been forthcoming. This is quite disappointing considering the cost involved in bringing these folks together and our needs. I fear this may be a portend of things to come.
Everyone seems to point to the importance of personalized treatment for patients because there are many forms that our myeloma can take. Yet no sessions were devoted to methodologies for making this happen. We don't have to wait for new drugs to get personalized treatment, we have many chemo drugs and novel agents available yet the optimal treatment regimen (amount and frequency of administration) is not known even for patients with the same myeloma disease. We need to find a replacement for randomized clinical trial and begin to use modeling to sort through all the drug combinations and treatment sequences. Otherwise, the output from these meetings will have little benefit for us patients.

Dear bloggers,
I am new to this site my father was diagnosed with MM 2 years ago. He reacted allergically to chemotherapy. So we started with revlimid treatment for 1.5 years now. He was doing fine, we could keep beta2 at around 3.5 and alumin above 4.5. Recently he got lungs infection, now his beta2 went up to 6.05. Do you know why this happens?

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  • IMW 2011 Topics: Declining Mortality Rates, New Drugs
  • Determining MM Treatment by Risk Category
  • Overall Survival Gains on Revlimid Maintenance
  • Considering the Future of Myeloma Treatment

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