wow, i feel uneducated and in the dark both at the same time. I read this whole posting and was awed. I havent heard of any of this. I was dxed in 2004. I was given 400 mg of Gleevac and went into full remission in 8 months. I have remained so. I have minor other problems, and feel well. Please explain to me why your doing this drug because I guess I missed the beginning. Sorry. Good luck with what your doing. Jackie
On Apr 14, 10:31 pm, livia klescova <[EMAIL PROTECTED]> wrote: > Hi all, > > how wonderful to read so many posts from all of you guys who have had CML > for such a long time. For me, 29 years old, it really means a lot. > > I would like to update you all on my progress with Gleevec+IFN+Sargamostim > trial. I am doing well. I don't remember if I emailed you guys what a > horrible experience it was when I gave myself the first injection. All the > side effects in the full force hit me. I had a high fever, pain in my whole > body, and I was shacking and shacking and I couldn't stop it. I was covered > with three blankets and nothing. It felt like a very bad allergic reaction > to IFN. I started on 0.3 cc of IFN, but the next day my doc lowered it to > 0.15 cc. I felt very tired, trashed for the first three days, but then it got > better. Following Friday, they increased my dosage to 0.3 cc - my initial > dosage and I felt fine. I have stayed on 0.3 cc for two weeks and since this > Saturday I started on 0.45 IFN. My dosage of Sargamostim (Leukine) remains > the same 1 cc of saline and 250 mcg of Sargamostim. > > It is interesting but I feel good. I was expecting worse. My energy level > is a little bit low, lower than being on Gleevec only and my stomach starts > to get bruised, red and is very hot...BUT I have never been happier to have > some extra pounds of fat on my body:) Just because of these injections, I > need my fat :) > > So, it looks like I started very bad, but now my body adjusted to IFN and I > feel good. They are going to be increasing the dosage of IFN until my body > can't tolerate it. So, I will need to feel sick and bad once again before > they find the right dosage for me. As my oncologist said, they don't know > what is the right dosage. What was the standard dosage for people doing IFN > only? I am sure it was very high. > > I am not sure if it is only me, but I know several people who did IFN prior > to Gleevec, or IFN+Gleevec combo and it just seems that these people are > responding better to the treatment. > > I can't believe that it's been almost month that I am doing my trial. I > have seen my Dr. Doug last Friday, but they only did my CBC, no PCR and he > needed to see me per protocol. I will see him again in a month. > > I would like to thank you all for emailing me privately or publicly :) I > really appreciate it. It's great to know that I have such a wonderful support. > > Love to you all, Livia > > between 0000-00-00 and 9999-99-99 --~--~---------~--~----~------------~-------~--~----~ [CMLHope] A support group of http://cmlhope.com ------------------------------------------------- You received this message because you are subscribed to the Google Groups "CMLHope" group. To post to this group, send email to [email protected] To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~----------~----~----~----~------~----~------~--~---
