Re: Still confused...

May 30, 2009

Hi , I know this is all confusing, and it takes a long time to get

acquainted with the words and letters, and all the info on cml. But most

important at this time is taking the drug. How do you take it? Gleevec is

best taken with a substantial amount of food, whether you are hungry or

not. You can't take it on an empty stomach, you will get sick. I'm sure

your dr. will not care if you split it up, some after breakfast, some after

dinner, but always with food. Drink lots of water. And do NOT lie down

after taking your pills, that can make you nauseous or make you throw up.

As for fatigue, you will learn to pace yourself, do what you can when you

are feeling better, and rest when you are not. it took me two months to get

used to Gleevec, that was when it was still in trial. I have had cml for 14

years this May, and although Gleevec did not work for me, I do remember how

it was in the beginning.

It's too soon I think to ponder over what will happen if it does not work.

Wait and find out, then worry about it. There are other drugs out there

that may work, but Gleevec is the first line approach, and it is worth

giving it a try. Lottie and I and others have been doing battle with cml

for up to 14 years, and one of our members is going on 35 years, how's that

for a record??

You have no idea how fortunate you are that there are sites like this one to

help you to deal with cml. In

the " :old days " we were not so fortunate, and were on our own. What I

would have given when I was in the Gleevec trial to talk to a site like this

one, and know I was not alone. Having every one's support is one of the

most important factors, and having their experience tops that. Hang in

there, things do get better, and remember, when Lottie and I were dx, they

gave us about 5 years to live!! Now they do not give you a time, because it

is now a chronic disease, like diabetes, or high blood pressure, and with

meds you can live a nice long happy life - it just takes some getting used

to. And remember this too, it is better than a lot of other cancers out

there, much better. I like to think we're sort of an elite group - we have

cancer but don't have to go through the radiation, or surgery, or heavy

chemo that other cancers require. Couples are even having babies, that's

how good their future looks to them! Marcos climbs mountains, others run

marathons, and ski, and here I am, almost 80, and feel better and do more

than most my other friends, who not only look 80, the ACT it!!!

Most of us call memory loss " chemo brain " , and laugh it off. And I would

surely say stress is not something you want, so if you can, get rid of it.

Eat with your pills, don't lie down after taking them, drink fluids, rest a

lot, and accept cml like it is something that is a lot better than a lot of

other things you could have. And you too will live to be 80 !!!!!

blessings, Bobby

On Sat, May 30, 2009 at 12:17 AM, wendyphillips54 <wendyphillips54@...

> wrote:

>

> You all seem so educated on CML. I am brand new to this and have no idea

> what some of the posts mean. What is pcru? I also have no appetite. I have

> to make myself eat or my husband makes sure that I eat something. I also

> can't stand to be in the sun or get very hot. Is that normal? I also have a

> lot of shortness of breath. I give out really easy. What am I looking at in

> the future? If the increased dosage of Gleevec doesn't start working then

> what would be the next step? Does anyone know of a cancer clinic in TN that

> will take patients with no insurance and low income? What about memory

> loss...has anyone experienced that? Does stress make the disease worse? I

> just need some answers and peace of mind. Thanks to anyone who can give me

> some answers to my questions...

>

--

a Doyle/dob 1929

DX 1995/Hydrea

2/00 - Gleevec Trial, OHSU, Dr. Druker

6/02 - Gleevec/Arsenic Trial, OHSU,Dr. Druker

6/03 - Gleeved/Zarnestra Trial, OHSU, " " " "

7/06 - Sprycel Trial, MDACC, Dr. Talpaz

4/08 - XL228 Trial, U. of Michigan, Dr. Talpaz

4/09 - Ariad Trial, U.of Michigan, Dr. Talpaz

May 30, 2009

Hi ,

I had some intolerance to heat in the first couple of weeks, but it

went away. Same for appetite and I lost a lot of weight but that also

got better. Bobby say it better than I could, the beggining is very

stressful and it takes time to get back to a normal life. But for the

majority it gets better and life is close to normal. PCRU is when the

disease is not detectable anymore (PCR Undetectable).

The stages of remission are

CHR : Complete Hematologic Remission (blood counts back to normal)

MCR : Major Cytogenetic Remission (2/3 of blood stem cells normal in

bone marrow biopsy)

CCR : Complete Cytogenetic Remission (100% of blood stem cells normal

in bone marrow biopsy and in FISH test, or 2 log reduction (100 times)

in PCR test)

MMR : Major Molecular Remission (3 log reduction (1000 times) in PCR test)

PCRU : CML undetectable by PCR test

Getting to CCR and staying there for some time is most of the way,

reducing chances of relapse to a few %. Now some patients do not get

the bone marrow biopsy and are tested by PCR from the start.

Marcos.

On Fri, May 29, 2009 at 9:17 PM, wendyphillips54

<wendyphillips54@...> wrote: