Friday, December 23, 2016

Happy holidays -- a quick update

Hi folks.

I've not updated this page in what seems like ages, mostly because there hasn't been that much that is interesting. However, a couple of you have been kind enough to reach out -- which I very much appreciate -- so let me say that I'm doing fine and here's a very quick update.

* I'm now seeing BB at Mt. Sinai in NY, where there are hitches relative to the extremely well-oiled machine at UAMS but which is improving. There are very good people there.

* I had a checkup there about three months ago -- my second in NY -- and everything is clean as a whistle. They do not do MRD testing; they do a kind of "deep sequencing" analysis which shows no Myeloma but a gene that is switched on that could, if all the dominos fall in a certain direction, lead to a precursor to leukemia. This could be a result of all the nasty treatment I had, or it could be absolutely nothing as by the time we age, 20% of the population has this same propensity. For the moment, there's nothing we can act on even if it IS something bad, so we soldier on.

* There was some nastiness afoot this past year when an organization similar to NICE in the UK tried to prescribe a single path of cost-effective treatment for Myeloma. This effort was backed by Mayo, unfortunately, under the heading of making treatment available for more people (paging Dr. Sanders, Dr. Bernie Sanders) but thankfully the organization backed down in the face of opposition from patient rights groups and patients themselves. For the moment, they agreed there can be no single path for therapy.

* I had more tissue cut out of my right index finger, which turned out to be negative, over scares of a return of the squamous cell carcinoma that was a side effect of the VRD treatment I was on. As I said, after digging through my poor finger's nail bed not once but TWICE, it was determined that there was no cancer there. So now I'm without a nail, but once again it's a tiny issue relative to everything else that could happen.

* I return to NY next summer, date TBD, for regular follow-up, and continue to be monitored locally on a more regular basis.

* I remain active in helping others with the disease and am pleased to be contacted by people that find this blog. Please continue to reach out to me if you need help.

That's pretty much it -- onward with life! Happy holidays to you and yours!

Warm regards,