Hi Livia, I can understand your concern. I guess we keep on learning that until we ask the questions we will never know the answers - so unless you ask what your counts are - well....
It is good that your PCR is trending down and has been doing so for the past year. I think Dr. Douglas Smith is a very good Dr. I actually spoke to him once as I was really interested in trying the clinical trial he is doing with Gleevec and Interferon. It is complicated for me as I am in Canada. When I was first dxed in November 2000, Gleevec wasn't approved. After much research on my own, I decided I wanted to try Interferon as it is the only drug currently available that offers some patients an opportunity to achieve a long term drug free sustainable remission (I am not going to use the word cure here). Interferon works by teaching your immune system to go after the leukemia. Some reports say that up to 20% of patients may achieve a level of remission with interferon that would allow them to go off the drug, all drugs and be drug free - we don't know how long this will last. Like transplants, some patients relapse. It is something that has always intrigued me. Anyway, I stayed on IFN (abreviation for Interferon) for over 18 months at a very low dose with only very minimal side effects. I switched to Gleevec rather than increase my dose of IFN in 2003. I had a good response to Gleevec but in 2006 I went back to IFN due to complications with side effects. Again, I was on a very low dose of IFN with minimal side effects, but I only achieved a 2.5 log reduction, so in February 2007 I went to Sprycel (70 mg QD). I really think that a low dose IFN with a reasonable dose of Gleevec is a very good idea. I think if you could be on 400mg of Gleevec and a low dose of pegylated IFN this would be a good trial to try. I am very biased towards it because if I would do it if I could access it. The chance to perhaps achieve a drug free sustainable remission is incredibly appealing to me and worth the well guided risk. Some patients do have a hard time with IFN. Before Gleevec was approved patients were on very high doses of IFN which caused horrible side effects, however, the much lower doses of IFN being tried with the trial you are thinking about significantly reduce the side effects. My theory is that you will never know until you try. I imagine that you will have to go through "pre-trial" check up and you will know your base starting points with regards to your liver, blood counts, etc. On the other hand the vaccines are very interesting too and I have to say I do not know much about Sargramostim, but I will look it up. Some people think that vaccines will work much like the GVL effect you get with a transplant without the high risk of a transplant. It is an agonizing decision to make no matter how you look at it. You are young and relatively healthy (except for CML). Ask Dr. Smith how side effects will be managed and how closely will you be monitored? Gleevec, like Sprycel will never entirely kill all your CML cells. These are drugs that we will have to take for the rest of our lives and we are still not sure about the long term effects of constantly taking these drugs. Besides, severe water retention is a serious problem on the long term. I had big issues with water retention with Gleevec and I did not have the same problem with IFN. I would like very much to read the information you have about the trial. If you get a chance to scan them, please email them to me. I will write to you privately and you can call if you would like to talk to me directly about this trial. Cheers, Cheryl-Anne On Jun 25, 12:19 am, livia klescova <[EMAIL PROTECTED]> wrote: > Just a little bit of my history with CML. I have been diagnosed in > February 2005. I am on 600 mg of Gleevec. I have a water retention side > effect and that's it... oh well also I am tired ... of course. I am almost > forgetting about this side effect : ) Anyway, I have been a patient of prof. > John Goldman for over a year and last PCR he has done (June 06?) showed "not > detectable". I was happy. Then prof. Goldman left and I went back to Johns > Hopkins and I am treated by the best doctor I have ever had - Dr. Doug Smith. > I like that guy so much. However, last month I have learned that since June > 06 he has been doing Q-PCR test and they all have been positive... WHAT??!! I > was confused. I have never called for the results, he has never called me... > so I was thinking, EVERYTHING IS OK. But my CML is still positive on a > Q-PCR. He said that if he would do a regular PCR test it would probably show > negative, but quantitative PCR is more accurate and it shows that my results > go down all the time. So, I am glad for this trend :) > > Now he said that I am doing very well on Gleevec, but my leukemia is still > there and it is detectable. He told me that there are two studies right now. > One is the combo of Gleevec with Interferon and the other one is I believe a > combinaiton of Gleevec and some vaccine. Now, I have been approved by my > insurance company for either of this trials .... but!! Do I want it? Why is > he suggesting me this? Because my leukemia is still detectable? When I asked > him he said that he would try it, because he really hopes that I can reach > the point where they will be able to take me out of the medication and my CML > may not return back, OR I will have some time to give my body a break from > medication and probably can try to have a baby (that's my thinking). Now, I > have like nine pages regarding this trials and I am going to scan them and > post it to the group - sometimes next week, because I need to find a scanner > and time :) As always. Now, I heard a lot of stories about Interferon > and I would have to inject it by myself every day to my arm or somewhere > (hope not stomach - I can't do that) and vaccination is like a series of > shots, like 10 or something and it's once in a month. Now I am reading now > that vaccines would be a combo with Gleevec, but Interferon would be with > Sargramostim??? Gosh, I am confused now. I need to scan it and post it to > the group. Guys, I just need to know what do you think. I am not against it > if it should help me & others who decide to go this way, but I am afraid that > it will be a little bit too much for me, my body - liver, kidney... I can't > afford to lose a job, I am still at school. I am afraid that I will have bad > side effects, I am wondering what if Gleevec will kill all of my cancer > cells... maybe a little bit later... they are stil decreaseing. > Now, is anybody on a similar trial now? > Good luck to eveyrbody and let me know your opinion please. > Livia > > --------------------------------- > Be a better Globetrotter. Get better travel answers from someone who knows. > Yahoo! Answers - Check it out. --~--~---------~--~----~------------~-------~--~----~ [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 -~----------~----~----~----~------~----~------~--~---
