Einstein once said that insanity is doing the same thing over and over and expecting a different result. We patients frequently look at our symptoms of exhaustion, bone and joint pain, anemia, and kidney issues as part of the aging process, and often our general practitioners look at us in a similar manner. In general, this results in delayed diagnosis with late stage myeloma and end organ damage. In fact, depending on which study you read, only 6% to 23% of patients are found in stage one, while 73% to 94% are not found till they are either ISS (International Staging System) stage 2 or stage 3. This would make little difference if life expectancy were the same for all patients no matter what the stage, however there is a significant difference. An NCBI (National Center For Biotechnology Information) study reports the following life expectancy by ISS stage for myeloma.
But given no change in what we do currently, the National Cancer Institute will continue to report 28% of myeloma patients will die within two years. This has remained the same for the last 6 years. In the development of the website www.myelomasurvival.com I received 2 year survival statistics from 6 exceptional myeloma treatment facilities. These facilities included Seattle Cancer Care, Cleveland Clinic, Medical College of Wisconsin, MSKCC, and The James at Ohio State. The average 2 year death rate for these six locations was a remarkable 4%, or 7 times lower than the NCI published rate for the entire US. Unfortunately as noted in my last blog post, 70 to 80 percent of myeloma patients are not being seen by a myeloma specialist. And the conundrum is that the current myeloma specialists are nearly fully booked and it would take years to get another 70 to 80% increase in myeloma specialists to handle the added workload.What then needs to change? Dr. Irene Ghorbrial of Dana Farber Cancer Institute said it best when she highlighted the following on a Cure Talk broadcast. Her point was simple, straight forward, logical, and impossible to argue against. Multiple Myeloma is the only cancer where we wait for it to metastasize and show organ, bone damage, or anemia before we begin treatment.
She and many other specialists are coming to the conclusion that screening, early diagnosis, and early treatment is the future of myeloma treatment. There are a number of steps that must be taken to reach this goal. Those steps are as follows:
Step 1 - We need to prove early treatment will result in improved Overall Survival.
Step 2 - We need to determine which MGUS and smoldering patients will progress to active myeloma and are candidates for early treatment.The first step has been proven with a number of trials in process and completed for high risk smoldering myeloma patients. The Spanish Group in Salamanca were the first to show the success of treating patients with Rd vs. the standard of care to watch and wait until the myeloma becomes active to treat. Dr. Maria -Victoria Mateos reported with a median follow-up of 75 months there was a 57% reduction in the risk of death for the early treatment with lenalidomide-dexamethasone vs not treatment arm. Dr. Mateos will be on Cure Talks in the near future to discuss her excellent work with smoldering myeloma patients. Since this initial study many more have followed two of which are considered CURE trials, the Spanish groups CESAR trial and US trial named ASCENT. Step one is well on its way!
The second step is being advanced by a number of organizations and myeloma centers of excellence. However the work of Dr. Ghorbial of Dana Farber has been one of the leaders in this effort. Their pCrowd program is designed to uncover the answers to Step 2. To view this program CLICK HERE.
To complete this post we must add a third step, and this just may be the most important step.Step 3 - We MUST find them early to treat them early.
Because 73 to 94% of patients are not found until they have either stage 2 or 3 myeloma, there must be a way to find these patients before their disease has progressed to these later stages. The iStopMM program in Iceland to test every person over 40 years of age was a great first step. For Iceland this just might save many lives and years of life. A great next step is the StandUp2Cancer initiative headed by Dr. Ghorbrial of Dana Farber and Dr. Ivan Borrello of John Hopkins. They will lead an outstanding team and test 50,000 people who are at higher risk of getting myeloma. The target population for the survey includes people with first-degree relatives who have had multiple myeloma, and African-Americans, since African-Americans are three times more likely than whites to develop the precursor conditions, and tend to develop them at an earlier age. You can read about this program if you CLICK HERE. Hopefully this early testing will one day include all people over 40 years of age.
I hope this gets to the point where all myeloma is found early and cured, but until then it just may be up to the patient to DEMAND a light chain and M Spike test if they have any of the the risk factors above or have any of the following symptoms: exhaustion, bone pain, anemia, kidney issue, confusion, and numbness are all symptoms of advancing myeloma. A more complete list of symptoms can be found if you CLICK HERE.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