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Hows RJ doing???


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Guest Majsju

"Well, guys, it turns out that the possible good news was only a chimera after all. The chemo did not work. I am still producing amyloids. Oh, well. I knew going in that I had only a 60% chance of a good result. I guess sometimes even my luck doesn’t stretch far enough. The silver lining in that is that the disease is stable. There has been no further damage to my heart from three months ago. There is that.


On the good news front, I snagged the last of 38 slots in a study to see whether a drug recently (last month!) approved for treatment of multiple myeloma will work on amyloidosis. Treatments that work with multiple myeloma usually work well with primary amyloidosis, and Dr. Hayman has high hopes for this. It is in the same family as thalidomide, but much less toxic and with far less severe side effects. I’ll take a pill a day for 21 days, lay off for 7 days, then go up to Rochester for a day, where they will do tests and give me my next month’s supply. We don’t expect to see any result in the first three months, but after 3 months of this regime, I will transfer to visiting the Mayo for a day every 3 months, adding a steroid at some point. I’ve been on this particular steroid before, short term. I had someone remove all the firearms from my house and study before I got home the first time I was put on this stuff, but the only side effect was a touch of euphoria. Harriet says I was very, very happy while taking it. So I guess I’ll be grinning a lot. God, I hate people who smile all the time! Now it looks as if I might become one. Jeez Marie!


It’s funny. If I hadn’t been stubborn, I might not have made it into this study. You see, the time for 100-day checkup was supposed to be the beginning of August, but I said I couldn’t do it then. (They aren’t used to hearing that at the Mayo.) That is when I’m taking Harriet to that spa hotel for her birthday, and I wouldn’t miss it. So by the time we had gotten around working back and around Dr. Hayman’s vacation, it turned into an 80-day checkup and I was there for that last spot. Had I waited to go until August, that spot almost certainly would have been taken by someone else. You see? It pays to be good to your wife.


Getting into the study was good in another way, too. Since the drug hasn’t been approved for amyloidosis, even if I could have gotten Dr. Hayman to write a prescription for me, my insurance wouldn’t have paid a penny on it. And it costs $18,000. A month. In the study, I get it for free. If it gets approved, then I’ll have to pay, but my insurance should pick up part of it. Though I have heard of $4,000 and $5,000 co-pays with this same drug. Oh, well. What you gains on the swings, you loses on the roundabouts.


Okay; enough of that."




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It's sad that RJ didn't make the original cures. I hope this second round will do it.

BTW, Ive been trying to find the person who said they'd been wanting to make a website to show RJ how much he's appreciated. I've been drawing a get well comic, and have been wanting to post it somewhere after I scan it on. Just leave a reply here and Ill send it to you when it's done!

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