I, too, began treatment with Interferon in 1999. They used Pegalated Interferon in a once a week injection. The dosage was huge and I had the same peripheral numbness you are experiencing now, plus other side- effects that were extremely toxic. In any case, after a year of hell, we found that the Interferon had not touched the CML and I was as in bad shape as a year earlier. Luckily, at that very moment I joined the Gleevec trial and within six months was up and about and getting on with my life. I do believe the dosage of Interferon being tried today, in an effort to juice up the immune system, and in conjunction with Gleevec, is much lower; the side-effects should not be catastrophic as they were with the high-dose, Pegalated form. It would be very interesting for all of us to know the results of Gleevec +Interferon on even one person. I am a firm believer in anecdotal reports of reactions to various drugs. Anecdotal reports very often lead to serious investigation in the laboratory. For instance, the use of calcium for leg and foot cramps began with an anecdotal report. Later investigation confirmed the action of Gleevec on calcium in the system and led to general instructions to CML patients about electrolyte balance and so on. Courage! And please do keep all of us informed. Vivi
On Jun 28, 8:51 pm, Ken Roberson <[EMAIL PROTECTED]> wrote: > Hi Livia, > > Sorry you are experiencing problems. Not from a scientific approach, > but I would like to provide you with my personal experience with > Interferon. I have been battling CML since 1998. Prior to the > availability of Gleevec, my doctors were trying to control my CML with > Interferon which was one of the standard treatments at that time. It > works for some, but for others it does not work. I was up to 7MU of > self injected Interferon daily until my feet and hands started > experiencing numbness. We are all different, but my body rejected > Interferon. The numbness left my hands, but a large amount of > neuropathy was left in my feet and legs. I now take medication three > times each day to control the pain, and I walk with a cane. > > Thankfully with a lot of prayers I was one of the test subjects in the > drug trials for Gleevec at Johns Hopkins Hospitals in Baltimore. > Gleevec has worked wonderfully for me and CML cannot be detected by > PCR. Life is good! > > Just be very careful in the use of Interferon as it does have very > negative effects in some patients. > > The very best wishes on your CML journey, and may life be good to you. > > Ken > A cancer survivor and living with cancer. --~--~---------~--~----~------------~-------~--~----~ [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 -~----------~----~----~----~------~----~------~--~---
