Guest guest Posted November 6, 2009 Report Share Posted November 6, 2009 Hi , the nurses showed me how to give myself a shot of Interferon, just in case Medicare would let me take it home and give it to myself. But Medicare being medicare, they preferred to pay the cost of the doctor, the nurse, the room plus the shot, go figure. But truthfully, if I had to give it to myself, I would not have stayed on it for 9 weeks! a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 Interferon/9 weeks/hydroxyurea/5 years 02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840 -  Zavie's Zero Club 09/2006 - out of CCR 04/29/08 - XL228 trial/U of Michigan 01/09/ - PCR 5.69 02/13/09 - XL228 trial ended due to side effects o4/13/09 - Ariad Trial U of Michigan 09/09/09 - PCR 0.017 04/13/09 - Ariad trial at U. of Michigan 09/09/09 - PCR 0.017 04/13/09 - Ariad trial, U. of Michigan 09/08/09 - PCR 0.017 From: hey00nanc <ncogan@...> Subject: [ ] Re: STI 571 Date: Friday, November 6, 2009, 4:30 PM  > > Ahhh, the good old Interferon days. Up every day, drive to the hospital, get the shot, come home and wait for the chills, the fevers, the headaches, and the body aches to set in. They lasted all day and by evening it was time to go to bed to get up and start all over again. I took it for 9 weeks, then one day told my doctor I would rather be dead than stay on Interferon. So on to hydroxyurea for 5 years. In those days we didn't have computers like today, and there were no support groups. But all that is history, Lottie, and we have survived! Yeahhhhhh!!! GO CMLERS!! ____________ ___ Hi Bobby and Lottie, I have a story for you. I decided to give my CML the full attack. So I went to MDACC and got in the triple therapy trial (inf, arac-c and HHT). Just a few weeks before, on vacation in Maui, I broke my left wrist and was going to have a cast on for 12 weeks! So, I had to give myself 2 shots, one-handed, every night. I would wait until Jay Leno came on so I would have something to laugh about. Then in the shower I had my through-the- chest catheter for the HHT and my cast to keep dry......now try to wash your hair. The old days makes us all, I think, so much more tolerant of anything that happens from taking a pill......so when they said Gleevec had NO side effects, some of it was relatively speaking. One of Dr. Druker's big goals was to have Gleevec in pill form instead of an injection because he knew how much CMLers hated giving themselves shots everyday. An injectible would have been easier....it was a challenge to get Gleevec past the stomach. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2009 Report Share Posted November 7, 2009 Hi, , I was diagnosed in June of 1998 and I did HHT, Ara-C, and interferon ALL at the same time for about a year. At the end of that time, there was no change in my PCR (100%), so they took me off the medicine and after trying a couple of other drugs I ended up in a Gleevec trial in December of 1999. The rest is history. I feel so blessed to live in the Gleevec era. I continued teaching through it all, but I taught great high school kids and they helped me through it. PLus my husband has been a rock for me and God has walked with me through each step of the way. It's good to hear from someone else who knows how lucky and blessed we are. Gay On Nov 6, 2009, at 9:35 PM, A wrote: > Hi to all the previous Interferon Users. I did not realize that > people were not giving themselves the shots of Interferon. I was an > Interferon user back in 1998, and the nurse taught me how to give > myself the shots, then they added Ara-C shots every other week. The > only relief I got was my weekends, and by the time you started to > feel good it was Monday again. Doing two different shots for those > certain weeks was horrible. Did anyone also do Ara-C? That is when I > had to stop working. > I could not even walk. It felt like my feet were in cement blocks, > fever, fatigue, etc. etc. We that used Interferon have come a long > way. When someone asks how I do it all these years, I just say that > I am glad to be where I am and not where I used to be. We are all > very blessed in so many ways. > > A > > > > > > > > > > > > Ahhh, the good old Interferon days. Up every day, drive to > the hospital, get the shot, come home and wait for the chills, the > fevers, the headaches, and the body aches to set in. They > lasted all day and by evening it was time to go to bed to get up > and start all over again. I took it for 9 weeks, then one day > told my doctor I would rather be dead than stay on Interferon. So on > to hydroxyurea for 5 years. In those days we didn't have > computers like today, and there were no support groups. But all > that is history, Lottie, and we have survived! Yeahhhhhh!!! > GO CMLERS!! > > > > ____________ ___ > > > > > > > > Hi Bobby and Lottie, > > > > I have a story for you. I decided to give my CML the full attack. > So I went to MDACC and got in the triple therapy trial (inf, arac-c > and HHT). Just a few weeks before, on vacation in Maui, I broke my > left wrist and was going to have a cast on for 12 weeks! So, I had > to give myself 2 shots, one-handed, every night. I would wait until > Jay Leno came on so I would have something to laugh about. Then in > the shower I had my through-the- chest catheter for the HHT and my > cast to keep dry......now try to wash your hair. The old days makes > us all, I think, so much more tolerant of anything that happens from > taking a pill......so when they said Gleevec had NO side effects, > some of it was relatively speaking. One of Dr. Druker's big goals > was to have Gleevec in pill form instead of an injection because he > knew how much CMLers hated giving themselves shots everyday. An > injectible would have been easier....it was a challenge to get > Gleevec past the stomach. > > > > C. > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2009 Report Share Posted November 7, 2009 a (Bobby) Doyle Brecksville, Ohio, USA DX 05/1995 Interferon/9 weeks/hydroxyurea/5 years 02/2000 - Gleevec Trial/OHSU 06/2002 - Gleevec/Trisenox Trial/OHSU 06/2003 - Gleevec/Zarnestra Trial/OHSU 04/2004 - Sprycel Trial/MDACC, CCR in 10 months #840 -  Zavie's Zero Club 09/2006 - out of CCR 04/29/08 - XL228 trial/U of Michigan 01/09/ - PCR 5.69 02/13/09 - XL228 trial ended due to side effects o4/13/09 - Ariad Trial U of Michigan 09/09/09 - PCR 0.017 04/13/09 - Ariad trial at U. of Michigan 09/09/09 - PCR 0.017 04/13/09 - Ariad trial, U. of Michigan 09/08/09 - PCR 0.017 From: A <suzzienovember@...> Subject: [ ] Re: STI 571 Date: Friday, November 6, 2009, 10:35 PM  Hi to all the previous Interferon Users. I did not realize that people were not giving themselves the shots of Interferon. I was an Interferon user back in 1998, and the nurse taught me how to give myself the shots, then they added Ara-C shots every other week. The only relief I got was my weekends, and by the time you started to feel good it was Monday again. Doing two different shots for those certain weeks was horrible. Did anyone also do Ara-C? That is when I had to stop working. I could not even walk. It felt like my feet were in cement blocks, fever, fatigue, etc. etc. We that used Interferon have come a long way. When someone asks how I do it all these years, I just say that I am glad to be where I am and not where I used to be. We are all very blessed in so many ways. A > > > > > > Ahhh, the good old Interferon days. Up every day, drive to the hospital, get the shot, come home and wait for the chills, the fevers, the headaches, and the body aches to set in. They lasted all day and by evening it was time to go to bed to get up and start all over again. I took it for 9 weeks, then one day told my doctor I would rather be dead than stay on Interferon. So on to hydroxyurea for 5 years. In those days we didn't have computers like today, and there were no support groups. But all that is history, Lottie, and we have survived! Yeahhhhhh!!! GO CMLERS!! > > ____________ ___ > > > > Hi Bobby and Lottie, > > I have a story for you. I decided to give my CML the full attack. So I went to MDACC and got in the triple therapy trial (inf, arac-c and HHT). Just a few weeks before, on vacation in Maui, I broke my left wrist and was going to have a cast on for 12 weeks! So, I had to give myself 2 shots, one-handed, every night. I would wait until Jay Leno came on so I would have something to laugh about. Then in the shower I had my through-the- chest catheter for the HHT and my cast to keep dry......now try to wash your hair. The old days makes us all, I think, so much more tolerant of anything that happens from taking a pill......so when they said Gleevec had NO side effects, some of it was relatively speaking. One of Dr. Druker's big goals was to have Gleevec in pill form instead of an injection because he knew how much CMLers hated giving themselves shots everyday. An injectible would have been easier....it was a challenge to get Gleevec past the stomach. > > C. > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 7, 2009 Report Share Posted November 7, 2009 I did Interferon for two months (Sept-Nov 99). The saddest, hardest two months of my life. I gave myself a shot every evening. When it was just about time to give myself the next shot I felt a little better, then the shot. I was taken off in order to pursue a bmt. Curiously (she said sarcastically) patients who had a bmt after taking interferon didn't " fare " as well. I experienced loss of appetite (I remember being unable to swallow a bit of scrambled egg), anxiety (didn't want to go anywhere, see anyone), and " dark thougthts. " I did not work and was in a haze. I did venture out to my school (so they'd know I was still alive) and couldn't remember how to get there. The day I was told to stop interferon was the happiest day of my life. I used to add other than my marriage, and the birth of my children-but honestly it topped those. After one day of no shot I met my husband at the door and said, " I want to go out to eat tonight. " He was stunned. Even though I was considered a likely candidate for an unrelated match that match never showed up. Walking past the tv one day I stopped when CNN announced a " new " drug for leukemia patients. I went on hydrea for a year while pursuing the STI trial (expanded). I could have gotten into the original trial but the dr treating me didn't know what I was talking about but acted like he did. He told me I wouldn't qualify even though the trial was just down the road. It took me several months to realize that. I got myself into the trial in Sept 2000 (not bad). I fired him after he looked at my drop from 100% PH+ to 5% in 3 months on STI571 (gleevec) and said, " I don't see why they're running all these tests. That's why insurance companies....blah, blah " (I don't remember the rest). Stayed with my trial doc for the last nine years. Got back to teaching and almost forgot I was diseased (I took my 400m faithfully). When gleevec failed me this past summer my doctor at Karmanos in Detroit got me back on track right away. I'm on sprycel and thankful. But it will be a while before I forget again. From: A <suzzienovember@...> Subject: [ ] Re: STI 571 Date: Friday, November 6, 2009, 7:35 PM  Hi to all the previous Interferon Users. I did not realize that people were not giving themselves the shots of Interferon. I was an Interferon user back in 1998, and the nurse taught me how to give myself the shots, then they added Ara-C shots every other week. The only relief I got was my weekends, and by the time you started to feel good it was Monday again. Doing two different shots for those certain weeks was horrible. Did anyone also do Ara-C? That is when I had to stop working. I could not even walk. It felt like my feet were in cement blocks, fever, fatigue, etc. etc. We that used Interferon have come a long way. When someone asks how I do it all these years, I just say that I am glad to be where I am and not where I used to be. We are all very blessed in so many ways. A > > > > > > Ahhh, the good old Interferon days. Up every day, drive to the hospital, get the shot, come home and wait for the chills, the fevers, the headaches, and the body aches to set in. They lasted all day and by evening it was time to go to bed to get up and start all over again. I took it for 9 weeks, then one day told my doctor I would rather be dead than stay on Interferon. So on to hydroxyurea for 5 years. In those days we didn't have computers like today, and there were no support groups. But all that is history, Lottie, and we have survived! Yeahhhhhh!!! GO CMLERS!! > > ____________ ___ > > > > Hi Bobby and Lottie, > > I have a story for you. I decided to give my CML the full attack. So I went to MDACC and got in the triple therapy trial (inf, arac-c and HHT). Just a few weeks before, on vacation in Maui, I broke my left wrist and was going to have a cast on for 12 weeks! So, I had to give myself 2 shots, one-handed, every night. I would wait until Jay Leno came on so I would have something to laugh about. Then in the shower I had my through-the- chest catheter for the HHT and my cast to keep dry......now try to wash your hair. The old days makes us all, I think, so much more tolerant of anything that happens from taking a pill......so when they said Gleevec had NO side effects, some of it was relatively speaking. One of Dr. Druker's big goals was to have Gleevec in pill form instead of an injection because he knew how much CMLers hated giving themselves shots everyday. An injectible would have been easier....it was a challenge to get Gleevec past the stomach. > > C. > > > > > > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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