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Newly Diagnosed with Smoldering Multiple Myeloma: Watch & wait
Blood Cancers & Disorders | Last Active: Aug 12 7:56pm | Replies (44)Comment receiving replies
my husband,by training, is a PhD inorganic chemist. He was a researcher and continues to be. Your language construct sounds very much like him.
We are very aware that it could be worse. What we are trying to do is to abbreviate this disease in someway if possible. That is why we are searching for a trial or information about treatments at the smouldering multiple myeloma phase.
Our thinking is why wait until it is a full-blown case if you could possibly stop it before it becomes a full-blown case of multiple myeloma
Replies to "my husband,by training, is a PhD inorganic chemist. He was a researcher and continues to be...."
Hi again. Since you are getting a lot of suggestions from others I thought I would tell you a little bit about what I learned over the past 20 years regarding your questions. First of all, as a Registered Nurse I always suggested that people facing a serious diagnosis find out where they know the most, see the most and do the most regarding their diagnosis. That took me to Mayo Clinic in Minnesota in 2002. They have a team of myeloma specialists, and my doctor there works with my local oncologist in all ways requested and needed. In fact Multiple Myeloma was identified and named there many years ago. Secondly, there is no cure for myeloma, but there is a chance that during your wait and watch you never do need treatment. In that case the treatment is much more of a serious risk to you than watching and waiting. As I said, I enjoyed a wonderful 14 years on watch and wait before I even needed treatment . I was in remission by 2019 and still have not gone back on treatment even though I came out of remission a year later. I would be happy to help you navigate that waiting so it does and take over your life. Nancy
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It is great that your husband knows how to do research. I don't , but that does not stop me from having opinions based on what little I do know (ha ha).
As a starting point, maybe your husband could find, or get help in finding, a survey article that describes approaches to treating smoldering myeloma.
The National Institutes of Health (NIH) has a clinical trials database, but I guess you already know that. As an organization, NIH issues grants to fund about 90% of its research, but about 10% is done on the NIH campus in Bethesda MD.
When I was diagnosed with AML I happened to belong to a Toastmasters club that met in a National Cancer Institute building. (NCI is part of NIH. PubMed is also part of NIH through the National Library of Medicine. I once had a library card there). One of the club members was a cancer researcher who specialized in leukemia, and he talked to his coworkers, and that led to some advice about the right treatment.
I hope some of this will be helpful . Please let us know what you find out.