Looking for anwers

[Guest guest]

Frist off I would like to say hi to eveyone and that I'm still

trying to figue out all of these site.But anyway here I go ,some

of

you already know of and me But for those of you who don't I

will make a long story short.Segio was dx Oct 13 2003 and was put

on

400 mg of gleevec and have blood test evey wk. and doing fine.In

fact one day about 6mo into the meds. his blood work came back and

the dr said that he was in remission we were so happy and at last

we could go back to living a some what normal life. Zavie gave him

a number and I kept on reading all the posting and tried to learn

what I could it all so greek to me and than one day I saw that a

lot you had had 2,3,4 bmb the frist year and only had the

frist one when they found the cml, so at the next dr. visit I asked

the dr why he had not order any follow up bmb and he look at the

chart and order one which has cause a lot of trouble.Frist he

couldn't get aneedle in as he said his bone were to to hard and

neede to send him to the hospital,there they did it and the test

came back saying that the blood was ok but the morrow wasn't and

there was a muntion 1in 25 or something like that ,so out toucla

and there was told he was under medicateand order him to have

another bmb for his number and to start to take 800 mg of gleevec

So now he is on 800mg sick weekly blood test and needs a bmb in a

month to compare the number .Now he has return to be mad sad and

not a happy person and basically just want to dead.I think I can

understand but I do'nt know what to do for him.I know the med. make

him sick and he go to the bathroom a lot and sleep alot and doesn't

get around alot because of alot of pain in his bone and he gained

about 30lbs. This illness has changed our life and goals so much

and our rows in life that one dosen,t kown if they are coming or

going or if its just a bad dream and we haven't woken up yet. Tank

you for listening it kinda help a little

maggie=wife

sergio dx10-2003

[Guest guest]

At 11:15 PM 6/5/05 +0000, you wrote:

>the test

> came back saying that the blood was ok but the morrow wasn't and

> there was a muntion 1in 25 or something like that ,so out toucla

> and there was told he was under medicateand order him to have

> another bmb for his number and to start to take 800 mg of gleevec

> So now he is on 800mg sick weekly blood test and needs a bmb in a

> month to compare the number .Now he has return to be mad sad and

> not a happy person and basically just want to dead.I think I can

> understand but I do'nt know what to do for him.I know the med. make

> him sick and he go to the bathroom a lot and sleep alot and doesn't

> get around alot because of alot of pain in his bone and he gained

> about 30lbs. This illness has changed our life and goals so much

> and our rows in life that one dosen,t kown if they are coming or

> going or if its just a bad dream and we haven't woken up yet. Tank

> you for listening it kinda help a little

> maggie=wife

> sergio dx10-2003

Hi Maggie,

Where does your husband get his medical care? do you know if he is seeing a

cml specialist?

The usual starting dose is 400mg......but when another problem is found

(and I think you said your husband has another mutation?? can you get more

information about that)............

it is typical to try to increase the dose, sometimes doubling it to

800mg......but not all patients

do OK with that dose, and sometimes they have to lower it to 600mg. You and

need to tell the doctor that he is having too many problems with

this dose.

And also.....maybe there are some remedies for his side effects.

For the diarrhea, most people try Imodium....it is available in the drug

store without a prescription.

Some people do need to take medication for bone pain. Fatigue is pretty

common with the higher dose and sometimes it gets less after a

while.............

but it sounds like you both need to discuss the problems he is having with

his doctor.

Also, some people find an anti-depressant helpful for a period of time.

The dose he is not taking is interfering with his qualify of life.....so

that is what you need to talk to the doctor about. Hope this helps some.

C.