Please see my responses in-line. > My dr told me the other day if I had a 0% reading on my PCR then I > would have 100% chance of living 5 years and I was cured. The > definition of cured being I would continue on Glivec. Well like many > others I am grateful for Glivec but not sure what quality of life it is > with the side effects.
Rusty, most people have an extremely good quality of life on Gleevec, and most people on Gleevec or one of the newer drugs are expected to live a normal life span, not just 5 years. The first few months on Gleevec, you may experience any of several side effects from time-to-time. These include nausea, diarrhea, pain in the legs or feet, fatigue, weight gain, etc. A great deal has been written on this subject, and I encourage you to read as much as you can about it. Most of the side efects can be mitigated. For example, Immodium usually takes care of the diarrhea, and drinking tonic helps with the leg/foot pain. After a few months, many of the side effects will disappear, and/or you will have learned how to manage them. Sometimes, homeopathic remedies work. For example, I get foot cramps at night; at bedtime, I take a couple of tablets of a homeopathic remedy called "Leg Cramps" which works quite well. > 1. Has anybody decided to go off Glivec after dramatically changing > their diet? It would be well for you to learn about the root cause of CML and how Gleevec and the other targeted therapies work to control it. At the present time, I do not believe that there is any evidentiary correlation between diet and CML, either scientific or anecdotal. There are experts on this forum who can be more definitive on this issue than I am. > 2. What supplements are we allowed to take and what are we not. My dr > seems to roll his eyes when I mention supplements. I don't know of any supplements that interefere with the Gleevec healing process. MDs know very little about most supplements because the companies that make them are not often interested in spending the money to scientifically test their efficacy. Most supplements are harmless, so it probably won't hurt to try them. I can only suggest that you do as much research as possible. > 3. What generally happens if you go off Glivec? Does it all come > flooding back. The evidence is that Gleevec will not eradicate the biochemical mechanism that causes CML. It merely keeps it under control. If you stop taking it, chances are that it will return. > 4. If you go off Glivec for a short period does this create resistance > to the drug. No, but you are taking a risk. I wouldn't suggest trying it until your PCR test shows no evidence of the disease. Then, if you stop, I'd get a blood test done every month, and would resume taking Gleevec at the first sign of the Philidelphia chromosome. Conventional medical wisdom is "don't stop unless you can't live with the side effects." > 5. Has anybody cured themselves by alternative therapies? I don't know of anyone who "cured himself." The only known cure is a bone marrow transplant, and even there, success is not guaranteed. Many BMT recipients appear to be cured only to have the disease resurface. > > I am not sure if there are many folks that are on this board that are > just alternative health folks? Are there alternative health folks that > have come to the decision that the only way to go is Glivec. Anybody > cured themselves naturally by dramatically changing their life. I suspect that the majority of individuals who have tried curing CML by alternative treatment methods have passed away and are therefore not able to write about their experiences. Now I have a question for you. One of Gleevec's common side effects is water retention. My doctors refuse to prescribe a diuretic. I've been looking toward homeopathic/herbal remedies like dandelion root, but haven't found one that works. Do you have any recommendations? Mike Burwen --~--~---------~--~----~------------~-------~--~----~ [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 CMLHope@googlegroups.com To unsubscribe from this group, send email to [EMAIL PROTECTED] For more options, visit this group at http://groups.google.com/group/CMLHope -~----------~----~----~----~------~----~------~--~---
