Hi Giora and all my friends,
Sargamostim or Leukine is a growth factor that has important biologic
activity on CML cells - it seems to differentiate them and my oncologist - Dr.
Smith said that when they studied Sargamostim in combo with IFN it made the IFN
more effective. I take IFN and also Sargamostim by injections. Sargamostim
looks like a white powder that needs to be mixed with saline and then you can
use it. I am on this trial in Johns Hopkins University with Dr. Doug Smith. I
posted the info about this trial, I can re-post it if you want me to. I am
taking a regular IFN, no Peg IFN, so I am doing shots every day... every day
IFN and every day Sargamostim.
So far I am doing fine on this combo, however they are increasing my dosage
and the last increase was from .30 cc to .45 cc and after three days on .45 cc
I started to have an elevated fever and flu like symptoms. Actually it just
happened today:) Also my belly is a little bit red and hurts... I went to the
aerobics class yesterday and I couldn't do many exercises. Other than that I am
fine, but I hope they will not up my dosage tomorrow to .60 cc because I feel
like it would cause a trouble:)
I also wanted to update group on my blood test results from last week. My
red cells are at 32.8 (I believe the lowest range I have seen, but my doc.doug
says normal), white = 9,280 - first time so high since diagnosed, but my
oncologist warned me that it will happen while on this trial, so he knew about
it and informed me, so i did not freak out !! He said that it is a very good
result. My WBC are usually around 4.2 - 5.8. Platelets 202,000 - stable and
there was some problem with my PCR, so I don't have my results. They will do
one next time I will visit my oncologist - Dr. Doug. I will let you know then.
Hope everybody is doing fine. Cheryl, thank you very much for your email.
Livia
----- Original Message -----
From: livia klescova
To: [email protected] ; [EMAIL PROTECTED]
Sent: Tuesday, April 15, 2008 4:31 AM
Subject: [CMLHope] Almost a month on Gleevec+IFN trial
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
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