hello Livia thanks for posting about your trial. this is the first time i hear about this triple combination, and it is very interesting to hear about it. can you elaborate about the Sargamostim compound? what is it? how do you take it? is it by pills or other way? which medical centre does this trial? i am sorry about your first shock of starting ifn. i am glad it got better. are you taking the daily ifn shots or are you getting the once weekly shots of peg ifn? the second type seems to have less side effects. i will always remember the 7 months i took ifn when i was diagnosed more than 8 years ago. the first 6 months were not easy, but i could live with the side effects. than it realy got to me, and i started having psychological effects like depresion and fears and i was quickly moved to glivec. every patient reacts diferently to each drug and i hope you will do fine on the combo best regards giora ----- Original Message ----- From: livia klescova To: [email protected] ; [EMAIL PROTECTED] Sent: Tuesday, April 15, 2008 4:31 AM Subject: [CMLHope] Almost a month on Gleevec+IFN trial
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 -~----------~----~----~----~------~----~------~--~---
