Guest guest Posted February 21, 2010 Report Share Posted February 21, 2010 Dear Bob, I certainly look forward to your wise cracks, as does everyone else. I am just sorry you have to go back on INF as I know what a b**** it can be. You can make me the butt of all your jokes, I have a thick skin and so does Bobby. Bobby was diagnosed about 15 years ago, I come next with 14 and you with 13. What a trio we make. 9mu of INF seems like a lot, but when we were diagnosed, they started you on 15mu a day. For me the fever came when I stopped for a day, but when it was continuous, I didn't have the fever. I remember keeping it in the refrigerator and finding a place away from a bathroom or kitchen where it was the most sanitary. I would set out a folded sheet in the bedroom and spread everything out there, where there was less chance of contamination. It took my appetite away and the metallic taste was awful. The only things I could eat that would take the awful taste away was pasta sauce and oysters. I started out on 9mu and could tolerate 3mu a day. My only positive results were a 15% reduction in Ph+ cells, not enough to warrant staying on it any longer than I had to. Next was Gleevec, which we all believed was the big panecea in the sky. It sounds like they are using INF as an orphan drug and off label. I suppose they will always have a need for it for other things like Hepatitis. I remember Jimmy's cousin taking it and she complained of the same symptoms we had on it. When we would visit, she would ask if we minded if she lay on the sofa while we visited with her. That was quite a few years before I was diagnosed, so I never dreamed that someday I would be on it. We will be standing by to see how well you progress on this combo and you can kick butt any time you like, we look forward to it. This combo may just work for you Bob and I know there are a lot of prayers being offered to lift you up. Hands & hearts, Lottie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 21, 2010 Report Share Posted February 21, 2010 Dear Lottie, Please know that I've never tried to make you the 'butt' of my jokes--it's just that you're so easy. You, Bobby, and I have travelled a lot of roads together, many of them unpaved, many of them crooked. We'll continue that trip. I think that researchers are making Interferon the 'generic' cancer drug. Of course, the researchers don't have to take it and live in their labs dreaming of what crazy combo they can come up with. Then they run a clinical trial that compares Inteferon alone with Interferon and another drug in combo. I think 9 miu is quite a lot even if it's only three times per week. I'm 10 years older, the last Interferon caper put me into CHF, and I still can't remember names, dates, etc. Oh well, if I fail the Interferon/Avastin (that's a colon cancer drug by the way) combo, I'll probably go on Voltrient. One of the side effects of Voltrient is a change in hair color--I've already ask my oncologist if I could have blue! Bob , Granger, Indiana > > Dear Bob, > > I certainly look forward to your wise cracks, as does everyone else. I am just sorry you have to go back on INF as I know what a b**** it can be. You can make me the butt of all your jokes, I have a thick skin and so does Bobby. Bobby was diagnosed about 15 years ago, I come next with 14 and you with 13. What a trio we make. > > 9mu of INF seems like a lot, but when we were diagnosed, they started you on 15mu a day. For me the fever came when I stopped for a day, but when it was continuous, I didn't have the fever. I remember keeping it in the refrigerator and finding a place away from a bathroom or kitchen where it was the most sanitary. I would set out a folded sheet in the bedroom and spread everything out there, where there was less chance of contamination. It took my appetite away and the metallic taste was awful. The only things I could eat that would take the awful taste away was pasta sauce and oysters. I started out on 9mu and could tolerate 3mu a day. My only positive results were a 15% reduction in Ph+ cells, not enough to warrant staying on it any longer than I had to. Next was Gleevec, which we all believed was the big panecea in the sky. > > It sounds like they are using INF as an orphan drug and off label. I suppose they will always have a need for it for other things like Hepatitis. I remember Jimmy's cousin taking it and she complained of the same symptoms we had on it. When we would visit, she would ask if we minded if she lay on the sofa while we visited with her. That was quite a few years before I was diagnosed, so I never dreamed that someday I would be on it. We will be standing by to see how well you progress on this combo and you can kick butt any time you like, we look forward to it. This combo may just work for you Bob and I know there are a lot of prayers being offered to lift you up. > Hands & hearts, > Lottie > > > > > > Quote Link to comment Share on other sites More sharing options...
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