Hi,
I am doing this trial, because after three years on Gleevec my CML is still
detectable. My other reason why I am doing this is that I would like to become
pregnant. After six months being on this trial if my PCR will come not
detectable (I believe three months in a row), they will take me off the
medication (Gleevec+IFN+Sargamostim). And this is a third reason why I am
doing it. I would like to get off the pills (for a short or a long time).
Nothing is guaranteed, so we will see. It is a trial, so I am trying :) Long
time ago I posted the trial info to the group. Have you seen it? This trial is
at Johns Hopkins University with Dr. Doug Smith.
Please ask me if you have more questions.
This weekend was a little bit hard. I have stayed in bed for all the weekend
because I got sick. I am not sure if it is a treatment or if I got sick for
real, since on Friday and Saturday it was hot, almost 80 F and today it is 45
F. Crazy weather and tomorrow I have to go to work. Ugh... not ready.
Livia
[EMAIL PROTECTED] wrote:
wow, i feel uneducated and in the dark both at the same time. I read
this whole posting and was awed. I havent heard of any of this. I was
dxed in 2004. I was given 400 mg of Gleevac and went into full
remission in 8 months. I have remained so. I have minor other
problems, and feel well. Please explain to me why your doing this drug
because I guess I missed the beginning. Sorry. Good luck with what
your doing. Jackie
On Apr 14, 10:31 pm, livia klescova
wrote:
> 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
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