The IMF(International Myeloma Foundation) www.myeloma.org and the LLS(Leukemia, Lymphoma, and Myeloma Society) www.lls.org , both have support groups for multiple myeloma patients. The locations of the current chapters are listed on their web sites. The meetings provide information on treatments, advise, support, and updates on the newest clinical trials. You create friend ships and this support provide a very positive atmosphere for the patient and there care giver.
Anecdotal evidence would indicate that these groups do have a life expectancy that is much greater than the average of the the multiple myeloma patient community. Pat Killingworth a multiple myeloma activist and author has stated in his blog that his support group has a life expectancy much greater than the average. I belong to a support group and we have lost 12 of our 36 member is the last 4 years, and if we had an average life expectancy of 4 years as reported by the National Cancer Institute our group would have lost 18 members or 50%. If you do the math our group has a life expectancy of 6.0 years. This is 50% better than SEER and I am so thankful that our group has been better than average. Why are we better? We have great leadership, we support each other, we refuse to let our members accept substandard care, we are very knowledgeable about this very rare blood cancer, we usually find or have a myeloma specialist on our team, and each member and their care giver is resolved to "BEAT the BEAST"!
I am developing more substantive data to support this thesis, and have sent a letter to the IMF(International Myeloma Foundation) support group leaders for their participation. This request has resulted in 9 responses, that in my opinion support this thesis. I will be updating my blog with the results in the near future.
Find additional useful information by going to www.myelomasurvival.com .
Together we can "SAVE LIFE"/ Gary R. Petersen
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