My Multiple Myeloma Celebration – Ding Dong the Witch is Still Dead!

Announcement –  March is Multiple Myeloma Awareness Month and on March 5th, Dr. Noopur Raje of Massachusetts General Hospital and Harvard Medical School was the  featured speaker on the Myeloma Cure Panel.  The panel discussed new initiatives for Clinical Trials, Awareness and Improvements in funding for trials.  To listen to a rebroadcast CLICK HERE.


Every year I go to UAMS MIRT in Little Rock for annual testing.  I have now been in CR or complete response for 9 years, but each year my wife notices certain signs that start to appear about a month before I go. It is a mind game that I have every year, and can only imagine how each of us with myeloma has similar thoughts.  Will it come back, will I have more lesions, will my MRD be negative, will it morph in MDS(Myelodysplastic syndrome),  will my kidneys fail again, and on and on and on.  The result is that I become irritable, anxious, restless, and all the aches and pains of age become questions.  I also DREAD the trip each year. The people at UAMS MIRT are great, but I would just about like to be anywhere else.  And it is not the thought of the bone marrow biopsy, or the fact the MRI irritates my shoulder bursitis and hip arthritis to the point I have had to bale out of the MRI twice.  Pain so bad that I want to gnaw my arm off.  I have learned to take pain meds before I get into an MRI.  This angst must be the fear of the unknown.  Last year I had my first MRD (minimum residual disease) test, and it showed no myeloma cells in over 2.5 million cells tested.  This turned my frown upside down.  And thank God my MRD test was negative again.  Ding Dong the Myeloma is still dead!!

I have said Dr. Barlogie is the Wizard of Ark, and over the years he has proven the ” hit it hard up front” approach of Total Therapy works for the majority of low risk (85%)  patients.   I asked him if MRD would be a corner stone to the treatment of myeloma, and he said that it would be important but he had seen CR and MRD negative disease which still showed active lesions in the bone marrow.  His point was it would be the combination of clear and clean imaging with MRD negativity which would be an important element of treatment. 

Dr. Barlogie gave me his most recent publication which was titled, “
Curing myeloma at last: defining criteria and providing the evidence.” It is an exceptionally well written article which was published in Blood and is 26 pages long, and if you want to do some midnight reading CLICK HERE.  The net of this is the average survival at 10 years is 60% for the most recent Total Therapy trial TT3a, and an estimate for average life expectancy will likely be close to 14 years, or over 3 times the average reported by the National Cancer Institute.  In addition, they believe 50% of low risk patients will be CURED.  

I have questioned why Total Therapy is not a standard treatment in the USA,  and I have been told by many it is aggressive and more importantly it has never been compared to other treatments of myeloma in a blind clinical trial.
UAMS has stated it was a moral dilemma to put people in the non Total Therapy side of the trial and that is why they have not conducted such a trial.  However, if there were a trial of 400 people, 200 would be in the non TT side of the trial, whereas the benefit might apply  to the 25,000 newly diagnosed each year.   In addition, the non TT side of the trial could opt out at any time and go into the TT leg if MRD and imaging proves the non TT leg to be inferior.  This I believe is a clinical trial that is already 12 years late.

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:

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