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Monday, July 20, 2015

Visit with Dr. Richardson

It was with some relief that I got my next month's supply of Revlimid on Friday.  That means I can continue the maintenance therapy while we are in Peru. Yay!  When I went to the Farber today for my monthly checkup, Kristen, the new transplant nurse, credited me with pointing out to them that they didn't have their ducks lined up for this new follow on protocol.  Things might have worked out anyway, but it doesn't hurt to be proactive.

I'm pleased to say that my numbers looked really good again today, so the beat goes on.

I finally had a chance to meet up with Paul Richardson again. It's OK that I haven't seen him for a while, as it means I'm doing fine. It was really great to meet with him. He greeted me like a long-lost friend, which was really nice. By the way, he was only a little more than an hour late this time, which I think is s new record!  We chatted for a while about politics and the sad state of the world, including their highly-touted new software system, which everybody I've talked to so far says is awful. When he finally got around to my medical stuff, he was very pleased with my numbers and my continued remission.  Because I'm doing so well, I can now reduce my Zometa infusions from every 2 months to every 3 months.  The less often I get that IV needle, the better.

I was concerned about new data showing that while Revlimid shows great result s as a maintenance therapy, there is an enhanced risk of secondary cancers (11%), which seems quite high. Paul reassured me that much of this risk is actually due to the chemotherapy drug melphalin, which I received during my stem cell transplant, but I only received one dose, while many in the database had two or more. Besides, even accounting for that risk, the survival benefits of Rev far outweigh the risks. Also, I am on the minimum possible dose of Rev, which reduces my risk. Nevertheless, I still plan to see my dermatologist next month for my 6 month checkup.

I asked him about what he would recommend if I were to relapse soon. As I suspected, he would probably put me on Pomalyst (since I would have become refractory to Revlimid), coupled with Velcade and dex.  Since there is an ongoing clinical trial, the Pom would be free.  That wouldn't suck.

I also asked him about Kyprolis as an alternative to Velcade, since recent clinical trials have been so positive. He's not so keen on it, as it can have some very serious side effects. Two of his his patients have died from heart problems he thinks we're directly related to the Kyprolis. Velcade has side effects too, mostly peripheral neuropathy.  As he said, neuropathy is uncomfortable, but nobody has died from it. OK then.  Next subject.

I told Paul about my decision to pass up the Yellow Fever shot before going to Peru. He thought that was fine. I'll just plan to swathe myself in Deet while in the rain forest.

The Multiple Myeloma Research Foundation (MMRF) is sponsoring a free seminar next month in Boston on August 22. Dr. Richardson is hosting it. I told him I'd be there and he told me to bring as many family and friends as I could. If you are interested, let me know.

We leave for Peru tomorrow. We're really looking forward to a great trip  It will be awesome to see Holly and Ryan again. Maybe I'll have a picture or two for my next blog post.

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