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Saturday, December 15, 2018

Richardson Visit

Last week I met with Paul Richardson and his fellow, Tom Garcia, to discuss my options for Revlimid maintenance going forward.  This is the first time I had met Tom, who has worked with Paul for the last 3 years.  He was very impressed with how well I am doing.  One area I discussed with Paul was whether an MRD test would be clinically useful in determining whether or not I should remain on maintenance therapy.  His answer was no, because there have not yet been any clinical trials to demonstrate any advantage to discontinuing maintenance for MRD-negative patients.   I was not at all surprised that he strongly recommended my continuing with the Revlimid maintenance.  In other words, if it ain't broke, don't fix it!  Paul was also very upbeat about all the new treatment options now available once I eventually relapse.  It was a good discussion.

For any of you who are concerned that I might choose to stop taking Revlimid because of the cost, rest assured.  I'm not going to do that.  Life is too precious to take any gambles like that, regardless of cost.  Yes it's expensive, but fortunately I can deal with that.

In the process of preparing for our meeting, I did some research on new myeloma results presented at the recent ASH conference held in early December.  One paper in particular I found quite interesting.  Here is the link:  Revlimid, Velcade, and Dexamethasone, Followed By Stem Cell Transplantation, Yields Deep Responses And Considerable Overall Survival In Newly Diagnosed Multiple Myeloma.

This paper describes my treatment regimen almost exactly, although I was on the oral MLN-9708 instead of the infused Velcade for induction therapy.  You may recall that I am considered a high-risk patient because of my t(4;14) translocation chromosomal abnormality.  Not only that, but I also have the IgA type myeloma, which is more aggressive than the more common IgG myeloma.  Those were two things not in my favor at my diagnosis.

Two results from this study got my attention.  First, the median duration of remission of patients following stem cell transplant was only about 2 years!  That stunned me.  Here I am almost 7 years later still in remission.

The second result in this study was that the median overall survival of these patients was 8 years, but for those patients with one or more high-risk chromosomal abnormalities, the median overall survival after the stem cell transplant was only 5 years!

Obviously, I have been taking this way too much for granted.  The stark reality of my situation has suddenly crashed down on me.  I've been living on borrowed time.  I am one extremely lucky dog.  Every single day that I remain disease free is a gift.  It's up to me to make the most of it.


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  3. As a sign of gratitude for how my wife was saved from myeloma, i decided to reach out to those still suffering from this.
    My wife suffered myeloma in the year 2016 and it was really tough and heartbreaking for me because she was my all and the symptoms were terrible, she always complain of bone pain, and she always have difficulty falling asleep . we tried various therapies prescribed by our neurologist but none could cure her. I searched for a cure and i saw a testimony by someone who was cured and so many other with similar body problem, and they left the contact of this doctor who had the cure to myeloma . I never imagined myeloma has a natural cure not until i contacted him and he assured me my wife will be fine. I got the herbal medication he recommended and my wife used it and in one months time she was fully okay even up till this moment she is so full of life. myeloma has a cure and it is a herbal cure contact the doctor for more info on on how to get the medication. Thanks admin for such an informative blog.