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Well, I went back to see Dr. Bob Thursday. (Elodia, I forgot all about trying to stop & see you until we were almost back to . I'm sorry.)

The friends who drove me down insisted on driving their van, so it was more comfortable than taking my car. Plus, they wouldn't let me pay for any gas! What angels. It's about 5 hours round-trip. They even brought all kinds of snacks & sandwiches.

Anyway, the visit was productive in that it's helped me make a decision about the next move. You might remember that we were considering Cytoxan, or Remicade in the unlikely case that Medicare approved it. So I wrote down the 4 worst symptoms for me: neuropathic pain in feet, fatigue, muscle weakness & memory & mental problems. I asked him what were the odds that Cytoxan would help them. He said that in his experience the fatigue & muscle weakness would not be helped at all, the pain maybe a little. The likely improvement would be in memory, but possibly not enough to get me back to work. Then he said that we should make sure the disease was still active, as my symptoms could be from scar tissue, that is, damage already done. In that case, the Cytoxan wouldn't do any good. I don't want to take Cytoxan, with all its risks, if there is no active disease. One option he suggested was to go off the MTX & see if my symptoms got worse (would take a couple of months). If so, then he would assume the sarc was active & encourage the Cytoxan or at least resuming the MTX.

I think I'm going to stop the MTX (after discussing it all with Larry my local neuro on Monday) & see what happens. If I get worse, or develop new symptoms, then I'll take the Cytoxan. He also suggested resuming the MTX since the Cytoxan can take 6-12 months to kick in. But then after 2 years, the risk of bladder cancer goes up. By then, I guess I could go for the Remicade, or maybe there will be another treatment by then.

Last night & today I have been kind of depressed, thinking that there is a good chance that this (my current condition) is as good as it's gonna get. And when I can't take the MTX or the Cytoxan, and when I develop a reaction to the Remicade or it's not working anymore, I'll just have to sit back & wait for Ol' Sarky to pop up somewhere new. Maybe I'm too pessimistic.

Oh, here's an interesting sidenote. I knew that there had been some interest in Thalidomide, but didn't know about any success. Dr. Bob said that in a small trial they did, it tended to relieve the pain of peripheral neuropathy, but not the numbness. So that was an option for the pain in my feet, which is really getting debilitating. Downside, besides jumping through many large hoops for approval, it costs several hundred $ per month. I didn't even ask about side effects. Right now I don't think I'd be interested. If these feet get much worse I might give it another look. Anybody else tried that?

Well, I know there is more, but I'm really tired, so I'm hitting the sack.

P.S. I got another break this week. I've had trouble with an upper molar for a couple of years, hurting off & on. It has a large filling in it, the tooth had cracked a year or so ago & had to be repaired. It started hurting really bad a couple of weeks ago. My dentist thought it needed a root canal, so he sent me to an endodontist, who had done 2 other root canals on me. BTW, I don't think they are bad at all. I was thinking that I would just get the tooth pulled rather than get a root canal because I don't have dental insurance or money for a root canal. The endodontist happens to be the husband of a doctor friend of mine. I worked with her over 25 years ago as a nurse when she was an OB resident. I explained that I didn't have insurance anymore. I'd like to save the tooth because I had already lost the molar behind it, but I'd have to work out a long payment plan for a root canal. He told me he wasn't going to charge me! Nothing! When I said that I felt like I should give him something, he smiled and said, "A cookie!" So I'm making a big choc. chip cookie to take in next week when he finishes the root canal. It sure pays to have friends in grody places.

Ramblin' Rose

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