FredMartin
Multiple Myeloma Discussion • February 5, 2025
29 Years with MM: My Story of Hope
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I am new to Health Tree. My wife of 50 years, this year, has been my caregiver for the last 29 years since I was first diagnosed with single site MM in 9/1996. At that time MM gutted, to a shell, my thoracic 10 vertebrae requiring bone reconstruction of the spine using bone from my ribs and hip. Ten months later 10/1997 it came back as full MM throughout all my bones but not my organs. It left me with a broken shoulder and catastrophic fractured neck at C3, C4, and C5 with 75% collapse of C3. (I was still talking, breathing and walking).
I was rushed in 12/1997- 1/1998 to my first Auto/SCT using Cytoxin chemotherapy. I tolerated it pretty well but needed IV feeding for the 30 days in the hospital due to throat and intestinal ulcers from chemo. Afterwords No treatments were needed as the MM stayed in remission for the next 14 years. My MM returned 11/2011 as a large golf ball size tumor rapidly growing out of my sternum and it growing 75% larger inside next to my heart. Dexamethasone pill treatment shrunk it by 80% in a week, Revlimed was started for two months then my second Auto/SCT in 5,6/2012. They had me followup after this SCT with half dose Revlimed for a year even though my labs showed no MM. They said it had better outcomes doing this. For the next 6 years no treatments and all normal labs. In 2018 my 3 Kappa light chain values raise to 50. At that time I had heard at a MM conference in San Diego by a person with MM that she believed Turmeric Curcumin with Bioperine had stopped her elevation of MM counts. Also I read that blood cancers responded to Dandelion Root. I tried them both for two months and my Kappa light chains came down to 29 with the ratios following. My Kaiser MD asked me, what did you do, as he did not have me on any treatments. I shared and he encouraged me “to continue with what you are taking as it looks like it is working “. He said he had never seen before, of elevated MM Kappa light chains lowering on their own and staying close to normal levels for long times with no treatment.
Form that time, these last seven years, I needed no MM treatment by my Kaiser MD as I only have fluctuated up and down between 29 and 40 Kappa light chains and had no associated MM organ problems.
Unfortunately two and a half years ago I was DX with Metastatic prostate CA, metastasis to only one rib, and was treated with radiation and testosterone blockers. It worked well and at this time I show no signs of that cancer. I continue with only the testosterone blockers every three months as future treatment. I still take the two herbs plus more anti inflammatory ones. I show no other health problems. My MM is considered in remission by my new Kaiser MD with a 29 year diagnosis. She says I am an anegma. I am 72 and she said I was in such good health, if ever necessary for MM, she would recommend a third SCT.
I do expect my MM will come back active eventually as there is no cure yet. I hope my story will give hope that living a long time is possible with MM. I do know of a City of Hope Spokespersons with MM that has had his MM one year longer than me.
It is not easy being a cancer survivor or taking care of one. I hope and pray all the best to all cancer survivors and caregivers.
Fred
