Multiple Myeloma – What Would The Hematologist Say?

When you go to a truck stop and find it loaded with cars, you jump to the conclusion the food is wholesome, reasonable prices and good.   It is what we call anecdotal evidence.  This is the same type of conclusion you might come to when you see that most Multiple Myeloma advocates, like Pat Killingsworth, Nick Van Dyk, Lizzy Smith, Matt Goldman, Jenny Ahlstrom, Jack  Aiello, et el.  have a multiple myeloma specialist on their team, and they all are doing well and some have lived 2 to 5 times the national average life expectancy. 

However, when you have a nationally known food critic recommend food as 5 star, you don’t have to assume it is good, you know it just might be an excellent food choice.  I got the same feeling when a hematologist wrote and told me he self diagnosed, but researched his disease and found some of the best multiple myeloma specialists to plan and lead his treatment.  So, ” What Would The Hematologist Say?”  Thank you Dr. Robert Ira Lewy for being so kind and caring to let patients know that the myeloma specialists are a special breed of hematologist/oncologist and are a requirement for effective treatment.  

“I’m a hemalogist/9 yr myeloma patient and I wanted to thank you for bird dogging this data. I get treated at SloanKettering by the same fellow who did my tandem at MD Anderson originally, and I cheat by seeing Niesvisky at Cornell (actually they both know and hold my hand). Of course sometime they mildly disagree.I was lucky to have a 7 yr stringent CR, on Rev, then relapsed late 2012, now on Velcade and Dex with small spike.  Possible the most advanced cases are both found after neglect or lack of routine lab, they get poor treatment too? That is sobering.

Sergio Giralt did the transplants and has another in the freezer for me. He is now at Sloan Kettering heading transplants there.   My myeloma is familial so subconsciously that’s why I went into hematology.”

“When I diagnosed myself with myeloma in 2005 i had only anemia and no kidney or bone disease. Revlimid was just being used at Mayo with velcade and decadron so it’s effectiveness really hadn’t been established yet. The  CALGB has a protocol using tandem transplants which I opted for. It proved to be the right decision as I needed the second transplant to get a complete remission which then lasted almost 7 years maintained with revlimid which by then was approved tho when I started I got it from the manufacturer. I considered another protocol, total therapy 3 which was being offered at UAMS and also was a tandem transplant but involved two years following of intense chemotherapy. Results from it have been excellent, better than the CALGB study, but both are highly effective. I was advised to not get the UAMS study by some colleagues because of the high toxicity and future risks of complications such as myeloid dysplasia. So far my blood counts have been excellent. In relapsed on revlimid in 2012 and after 6 months needed treatment only because of a rising M spike. I chose another Mayo program, CyBorD, and got a partial remission which has continued to improve over a year of treatment. During that time more stem cells were collected for an anticipated salvage transplant if needed. If and when my present treatment fails I’m a candidate not only for transplant but for Carfilzomib/Pom, daratumumab or oral velcade, among other choices. Another choice is a transplant with high dose Revlimid preparation

My treatments have been easy and I only have spent one night in the hospital ever.  While I have had friends who rapidly progressed and died from their myeloma, sometimes getting quick enough rescue treatment, or progressing to kidney failure after 10 years of frustrating treatments, I’m hoping to stretch my course out.I don’t think vaccines or immunotherapy will be ready for relapsed   patients such as myself and will probably remain part of transplant regimes.

I should add that even though i am an expert, I waiting too long to get treated initially, so human nature plays a part. I might have had kidney damage or bone lesions tho fortunately I didn’t. Tho I knew all the other experts, my care would have been the same if I had just gone to md Anderson, the Texas state cancer system where I was living. It allowed me to enter a study which was highly positive ,which I never would have entered if I had chosen a local cancer program. I expect my next treatment may be investigational too, tho some excellent drugs have been approved since then.”

Dr. Lewy was in fact his own GP(General Practitioner), and even with his expertise, feels he should have started treatment earlier in his disease progression.  A brief bio of Dr. Lewy is as follows.,

Robert Ira Lewy MC FACP

Diplomate American Boards of Internal Medicine and Hematology
Member,,American College of Physicians,,American Society of Hematology and American Society of Clinical ONCOLOGY
Franklin and Marshall College 1964 A.B.magna cum laude
University of Pennsylvania School of Medicine MD 1971
Mercy Catholic Medical Center 1977
Cardeza Foundation of Hematological Research 1979

Associate Professor of Internal Medicine, Baylor College of Medicine and University
Of Texas Health Science Center at Houston 1979-2005

Methodist Hospital, St Luke’s Episcopal Hospital, Houston 1979-2005

Retired 2005

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