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,

Nick

6 comments:

  1. Good to hear you are doing so well, Nick. My SIL, who was diagnosed in 2007 is also doing well, after being off all meds most of 2016 except some medical MJ. His numbers have held steady (low) and his energy is returning. A good thing, too, since the family bought a small farm and he mows almost daily during the growing season. But sadly the sister who provided the allo for him, died in December with a cancer she thought was in remission. But we soldier on, feeling grateful for the good things that come our way. Intending you continue to enjoy good health and good numbers in this year and those to come!!

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  2. Thanks for the update, Nick - so glad to hear you're continuing to do well! That gives so much hope to all of us in the MM community! Don't wait so long between updates next time!

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  3. Hi Nick...I am glad you are well and hope you and family had a nice Christmas. I have missed seeing your blog and got out of the habit of checking, but happened to look today.

    I have wanted to find an opportunity to tell you how important your blog has been to my family. My younger brother was diagnosed with MM last March and I and another brother started researching alternatives to help he and wife decide on a course of action. Their bias was to act quickly, but it quickly became clear to me that MM was complicated enough to require a thoughtful evaluation of the many treatment alternatives. The complexity of MM and treatment options/risks/benefits was initially very overwhelming and left me struggling to offer advice to my brother.

    Then I found your blog, and it was cogent and clarifying. Since my brother's MM was the most important issue going on in our life, I quickly reached out to you with questions to seek clarification and get your opinion on alternatives. You were exceptionally generous with your time and quick responses...and it was only later that I started to get some idea of the bazillion things you had going on in your life (in addition to fighting MM).

    Paul is being treated by BB at Sinai and is receiving his final round of VDT-PACE consolidation therapy today. He achieved CR after the 1st of two stem cell transplants. His spirits and his health are good...now only 9 more years to call it a cure (and live long enough to die of something else)!

    I do not have the words to express my thanks and gratitude to you for sharing your story and helping my family with our fight. You have the gift of an incisive mind that helped us cut through many confusing issues...and told in a compelling way (I could not stop reading...I had to find out what happened next!) and with a great sense of humor.

    I am deeply thankful for you and wish you continued great health and success.

    Kind regards, Rob H.

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