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.
Hi Purdue Prof,
Your points are well-made. While this meeting did not reveal lots of new information since ASH 5 mos ago, I wouldn't say that "no sessions were devoted to methodologies" for "personalized treatment". Much of Day 1 focused on plasma cell biology and pathways. Other days presented research on MM treatment-risk approaches, genome sequencing & gene risk assessment at the time of diagnosis as well as gemoic mutations that occur during treatment. And there was also material presented on the myeloma cell and bone marrow microenvironment.
However, it seems to me that researchers are very early in the timeframe for understanding different types of MM and optimal treatments. While there wasn't new information of immediate relevance to patient treatment, results have occured in the past and will do so in the future. For example, when I was diagnosed 16 years ago, FISH and cytogentic tests weren't even done. Subsequently MM patients did these tests and were told that factors such as Chromosone 13 deletion or translocation (4;14)added a certain degree of risk. More recently, these studies have determined that patients with these risk factors will do better on Velcade, which seems to overcome these risk factors. However, best treatment recommendations for risk factors such as deletion 17p or translocations (14;16) or (14;20) are not yet well understood.
We've come a long ways since I became connected with myeloma but, of course, there's still a ways to go. And while I agree that results don't seem to happen quick enough, I believe the research that's been done has yielded some results and will continue to yield more for 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?