- Original Message -
From: mburwen
To: CMLHope
Sent: Wednesday, September 27, 2006 12:20
PM
Subject: [CMLHope] Re: Randy fish
test
Mayo ought to be pretty good, although I have not heard
anythingspecific to CML from there. You might look into having the
testanalyses
Amen,
The US health care system is totally unfair!! I pay $25 a month for my 400mg Gleevec supply, and for some reason my insurance carrier,(I have BCBS but my meds go through Caremark) will not let me get Gleevec at the pharmacy, instead I have to call Caremark and they overnight it to me?? I stil
Thanks Mike, We just don't want to do any thing unnecessary,because with any insurance company ,there is a limit to how much they will pay.Randy is 55,if he has to stay on 800mg for the rest of his life that is a lot of money.We just got his Gleevec today.We have BCBS,we only pay 35.00 a month.It c
Mayo ought to be pretty good, although I have not heard anything
specific to CML from there. You might look into having the test
analyses done at Mayo since it is likely to have superior equipment and
staff training. As I said before, it is easy to ship blood, and, even
if the blood is 2-3 days
Mike, Randy has had Two PCR test done.One at DX and one at 10 months. He has had mostly fish done,because they said it was not necessary until the fish was 0. I know this goes against every thing else I have heard on here,I will ask about this testing Monday. I'm not sure our Insurance company woul
Sandy, is your Dr. Doing regular PCR tests? If not, he should be.
After 6 months on Gleevec, the FISH test is not terribly useful. Be
that as it may, 6% is not a bad result, and, depending on the
capabilities of the lab that did the test, may even be within the
margin of error of the test proces
Thanks Anjana, Do you mean his last pcr? It was 18% in July.He was back on the 400mg than. He has not had a bone marrow test done sense Dx.They said it was not needed until he was 0 by fish.I'm not sure I agree with that but than I am no Dr either.His counts are what bother me the most right now.He
Dear Sandy,
I am sorry that the 600mg did not put Randy into FISH negative. The
FISH is at low levels, though. Most doctors recommend reaching zero by
one year of Gleevec, and that is one reason your doc is being more
aggressive and also because Randy has been going up and down in the
FISH re
Anjana, I will be so glad when his new Dr. gets here in July.He is an ONC And hematologist,The Dr. he is seeing right now is just a hematologist.I am going to ask about Neupogen though. I read that article on RDW and that is what I thought it said. I asked the Dr. about RDW and she just kind of slu
Except for anc at 1.0, his counts are all better than mine, and I am
staying on 600mg. This seems like a good case for medication to boost
neutrophil counts and stay on 600mg. I would definitely discuss this
with the onc.
As for the RDW indicator, Dr Bessman (Univ. of Texas Medical Branch,
Galv
Dear Sandy,
You are quite right about the high RDW. If Randy is responding well
to Gleevec, the RDW should go down. There is a study done relating RDW
to Gleevec therapy, I may have posted to you before and it may be in
the archives.
Sandy, it is very positive that Randy is responding to t
Thank you Trey,His RBC is not that bad4.48 (HGB 13.2) (HCT40.8) (MCV91.) (MCH29.5) (MCHC32.4) Platelets are218. I thought I read some where that elevated RDW was maybe a sign of relapse later in treatment. I am just wondering if they put him back on 600mg if his blood counts are not just going to b
His news is positive. Depending on what the rest of the blood counts
are showing, you might want to ask the oncologist about taking
additional medications to enhance blood counts to allow him to stay on
600mg.
The combination of CML and Gleevec can make red blood cell sizes vary
more than usual
Hi Allyson,Were you ever on a lower dose of gleevec?Do you have many side effects on that high dose?Randy has gotten along so good on 400 that I just worry about the side effects going to a higher dose.But he will do what ever he has to and we will deal with it as it comes.Thanks,SandyAllyson Morri
Thank you for your prayers and kind words,something I think we all could use dealing illness.Do you think there are things that we eat or drink that can keep the meds from absorbing like they should?Randy drinks green tea every night after super.It does not have gencoba in it.He only takes the glee
Thanks Rob,Hopefully the 600mg will take care of it.I have been following this new drug that they compare to gleevec that does not seem to have as many side effects.I think at this point we still have allot of options.It's all so mind boggling and scary.SandyRob <[EMAIL PROTECTED]> wrote: I hope
Dear Sandy,
I am sorry to hear that Randy's disease levels are not decreasing.
One of my friends had the same trend and when increased to 600mg,
achieved CCR within 3 months of the increase. Most doctors will look
at results again in 3 months' time. Stay positive!
There is still the 800mg
I am on 800mg of Gleevec and have been for over a year. I have a had a great response to 800-
From: Rob <[EMAIL PROTECTED]>Reply-To: CMLHope@googlegroups.comTo: Subject: [CMLHope] Re: Randy fish testDate: Wed, 1 Mar 2006 15:41:11 -0800 (PST)>>I hope the increased dose will help. If it d
I hope the increased dose will help. If it does not some have gone as high as
800 mg and got good results. The new AMN and BMS drugs are in various clinical
trial locations and he should be able to get access to a trial location if that
is needed. Those drugs have had very good results.
Rob
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