BY GARY PETERSEN
I often say you must have a multiple myeloma specialist on your team to be able to beat the published average life expectancy of 4 years for multiple myeloma. But then we have a Cure Panel with someone like Dr. Guido Tricot, and you become aware how very true this statement is. Myeloma Specialists know so much about this disease they almost don't know how much they know.
As a myeloma patient advocate, I would hope to think I have gained a fair amount of information about myeloma in the last 8 and one half years, however I learned more in one hour with Dr. Tricot than I had in a very long time. I thank Dr. Tricot for that education.If you did not have the opportunity to hear Dr. Tricot's Cure Panel Broadcast you can hear it if you CLICK HERE! The three biggest takeaways for me about this broadcast were as follows:
1) Dr. Guido Tricot is brilliant and has an uncanny way of bringing the most complex of concepts to a level where the average human can understand - A skill which many brainiacs do not have. His program provides a life expectancy at least 2 1/2 times longer than the average published by the National Cancer Institute. This is one of the best survival rates published by anyone in the world. Pat Killingsworth has put together an excellent blog post focusing on Dr. Tricot's treatment regimen and you can read it if you CLICK HERE!
2) He explained to me for the very first time that the dual transplant is not a double dose of high dose chemo, but a split dose of high dose chemo. What I mean by this is that high dose chemo is used for young leukemia patients, but the same dose would likely kill an older myeloma patient. So they split the dose into two phases to limit the toxicity. For me with kidney damage they spit the dose again because of my comorbidity.
3) MRD is a great tool in measurement, but because it is tested on the bone marrow it has a key limitation. Myeloma is very heterogeneous in the bone marrow, and as a result the samples can be good or bad just because of the location of the biopsy. Like Nick van Dyk mentioned, it is a lot like the spots on a Dalmatian, depending on where you biopsy it may be white or black. As a result MRD must be used in conjunction with M spike, light chain tests, MRI and PET tests, and tests of protein in the blood and urine to be sure a person is cancer free. He did mention they are working on an MRD test of the blood and not the marrow, which may have more value in the determination of MRD, without which heterogeneity of the location will always be an issue.
Please listen to his presentation, because it could be the difference of 10 years of survival or more as compared to the national average of 4 years. Good luck and may God Bless your Cancer Journey. For more information on multiple myeloma survival rates and treatments CLICK HERE and you can follow me on twitter at: https://twitter.com/grpetersen1
about the author
Gary is a myeloma survivor and patient advocate. His work centers around helping patients live longer by helping them to find facilities who are beating the average survival statistics. You can find Gary's site at www.myelomasurvival.com and follow him on Twitter at @grpetersen1