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
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