Guest guest Posted November 6, 2006 Report Share Posted November 6, 2006 Hi all! I am new to this group. I was dx'd with CML June 05-tried Gleevec for 6 months, had excruitiating bone pain, depression which ended up in hospitalization and overall a really bad QOL while on it. February 06 started a BMS(sprycel) trial which I did up until 4 weeks ago. I also experienced the same bone pain, plus extreme fatigue, entire body rash, and pretty much all the listed side effects! They just got worse over time and you can imagine my QOL im sure. Have been off all chemos for 4 weeks, felt great at first, now having some fatigue, but it is tolerable. On the 29th of this month I am going to be starting Interferon-not sure whether it will be pegylated or not-depends on what the insurance company will allow Anyways after all that-I would love to hear from anyone who has had experience with Interferon-good and bad so I have an idea what I may/may not be in for(realizing everyone reacts differently). I would appreciate any input you can give me Thanks alot ne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2006 Report Share Posted November 6, 2006 At 06:54 AM 11/6/06 +0000, you wrote: >Anyways after all that-I would love to hear from anyone who has had >experience with Interferon-good and bad so I have an idea what I >may/may not be in for(realizing everyone reacts differently). I would >appreciate any input you can give me Hi ne, Maybe I have read your notes on another list...are you from Canada? and maybe you know Cheryl-Anne, who has actually had good QOL with inf.....but she is an exception. There are many old time CMLers who were on this drug for years because it was all that was available. The peg-inf is supposed to be better..........also doing low dose (they used to Rx with high dose). My short experience with Inf was pretty bad.......I was a zombie (fatigue, hair loss, mental fog)....but I was on high dose, until my blood counts crashed and my dose was reduced. But maybe this is the drug for you........your body does not like the inhibitors.......so stay positive, don't let others experience influence you, we are all different. Also, I did not like the daily shots, which is another reason to try to get peg-inf. Good luck to you. C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2006 Report Share Posted November 6, 2006 Hi ne, I had a disasterous experience on Interferon. No use boring the rest of the list with my story. They have all heard it. Write me with your email address and I will write back. You can also call me. Did you or your doctor look into the AMN107 drug? Zavie Zavie (age 68) 67 Shoreham Avenue Ottawa, Canada, dxd AUG/99 INF OCT/99 to FEB/00, CHF No meds FEB/00 to JAN/01 Gleevec since MAR/27/01 (400 mg) CCR SEP/01. #102 in Zero Club PCRU 5/02 at RVH 2.8 log reduction Sep/05 3.0 log reduction Jan/06 e-mail: zmiller@... Tel: 613-726-1117 Fax: 309-296-0807 Cell: 613-202-0204 ID: zaviem >From: mm6nascar1 <no_reply > >Reply- > >Subject: [ ] Interferon >Date: Mon, 06 Nov 2006 06:54:23 -0000 > >Hi all! > >I am new to this group. I was dx'd with CML June 05-tried Gleevec for >6 months, had excruitiating bone pain, depression which ended up in >hospitalization and overall a really bad QOL while on it. February 06 >started a BMS(sprycel) trial which I did up until 4 weeks ago. I also >experienced the same bone pain, plus extreme fatigue, entire body rash, >and pretty much all the listed side effects! They just got worse over >time and you can imagine my QOL im sure. Have been off all chemos for >4 weeks, felt great at first, now having some fatigue, but it is >tolerable. On the 29th of this month I am going to be starting >Interferon-not sure whether it will be pegylated or not-depends on what >the insurance company will allow >Anyways after all that-I would love to hear from anyone who has had >experience with Interferon-good and bad so I have an idea what I >may/may not be in for(realizing everyone reacts differently). I would >appreciate any input you can give me >Thanks alot >ne > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2006 Report Share Posted November 6, 2006 Hi Yes I am from Ontario and I do know Cheryl-Anne-I have spoken to her- just want to get a few different views. Where u at the CML meeting at Princess Margaret in September? I am bad remembering names lately! > >Anyways after all that-I would love to hear from anyone who has had > >experience with Interferon-good and bad so I have an idea what I > >may/may not be in for(realizing everyone reacts differently). I would > >appreciate any input you can give me > > Hi ne, > > Maybe I have read your notes on another list...are you from Canada? and > maybe you know Cheryl-Anne, who has actually had good QOL with inf.....but > she is an exception. There are many old time CMLers who were on this drug > for years because it was all that was available. The peg-inf is supposed to > be better..........also doing low dose (they used to Rx with high dose). My > short experience with Inf was pretty bad.......I was a zombie (fatigue, > hair loss, mental fog)....but I was on high dose, until my blood counts > crashed and my dose was reduced. But maybe this is the drug for > you........your body does not like the inhibitors.......so stay positive, > don't let others experience influence you, we are all different. Also, I > did not like the daily shots, which is another reason to try to get peg-inf. > Good luck to you. > > C. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 6, 2006 Report Share Posted November 6, 2006 Suzanne, Interferon is a tough drug. I took it for almost 3 yrears. For the first 2 years, I wasn't off the couch for much of the day. It gives you flu like symptoms, fever, and extreme fatigue. Do take 2 extra strength Tylenol about 1 hour before taking your shot. Are they goingl to put you on Ara-C also? That is the usual combo. Good luck. mm6nascar1 <no_reply > wrote: Hi all! I am new to this group. I was dx'd with CML June 05-tried Gleevec for 6 months, had excruitiating bone pain, depression which ended up in hospitalization and overall a really bad QOL while on it. February 06 started a BMS(sprycel) trial which I did up until 4 weeks ago. I also experienced the same bone pain, plus extreme fatigue, entire body rash, and pretty much all the listed side effects! They just got worse over time and you can imagine my QOL im sure. Have been off all chemos for 4 weeks, felt great at first, now having some fatigue, but it is tolerable. On the 29th of this month I am going to be starting Interferon-not sure whether it will be pegylated or not-depends on what the insurance company will allow Anyways after all that-I would love to hear from anyone who has had experience with Interferon-good and bad so I have an idea what I may/may not be in for(realizing everyone reacts differently). I would appreciate any input you can give me Thanks alot ne --------------------------------- Sponsored Link Get an Online or Campus degree - Associate's, Bachelor's, or Master's - in less than one year. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 9, 2006 Report Share Posted November 9, 2006 Suzanne, I was on pegylated interferon for a little more than a year. I took my injection once per week and on the day of the injection, I couldn't function at all. My mind was fuzzy; I had flu like symptoms and slept a lot. However, the rest of the week was much better. I worked nearly full time and was as active as I could be although I did have limited energy throughout the treatment. Taking Procrit injections regularly, helped my red count stay up and that increased my energy. The good news is I went from 100% BCR/ABL cells to complete remission! From what I've heard from others, the Peg Interferon is more easily tolerated, as the injections are less frequent. If I were in your position, I would request Peg Interferon if that is possible. As said, we are all different and this may be the one that works for you! Good luck with your new treatment. Feel free to write to me personally if I can answer any questions or share more. Fran Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 30, 2006 Report Share Posted November 30, 2006 Hey , I will be writing to you, I would like to hear more about what your doctor is sugesting. You are in the UK? I think there are a few trial centres for the SPIRIT trial. You might want to check it out. Cheers, Cheryl-Anne --- In , " susan leigh " <susanlynn.leigh@...> wrote: > > I was very interested to hear about the interferon. I have a very low > PCR and understand that it can be very useful in this situation as long > as the side effects can be tolerated. > I am very seriously considering trying it. I have a multitude of side > effects with the glivec and dasatinib and would prefer to try the > interferon before thinking about a transplant. > My doctor was suggesting a 3 times a week regime. > > I am seeing him tomorrow so will know more then. > > > Leigh > Home Number: 0208-621-1664 > Mobile: 07956 269 368 > > PLEASE NOTE MY NEW E-MAIL ADDRESS > > [ ] Magic and Cancer > > Hello All, > > I haven't posted here in a while but here are my comments. > Quote Link to comment Share on other sites More sharing options...
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