Re: pcr test & down day.

[Guest guest]

Hi Joan,

I'm sorry you are having a rough time of things lately.

You know, every time I have tests run, I get a bit anxious and

nervous about things. All the " What if's? " have a way of creeping

into my brain, and you go back to all the uncertainty that you first

felt when you were dx'd. But, you know what? I try to just tell

myself, " Okay, whatever happens, HAPPENS, and I will deal with it

when it comes. Until then, I'm going to look forward, and keep on

going. Keep moving and keep living, and keep smiling.

When I'm having a down day, with side effects or whatever, I try to

do things that make me feel good. I like a nice bath, a good book,

homemade cookies and/or chocolate! :-), a movie, or go play in my

flower garden. It takes my mind off of things, and I tell myself,

that tomorrow is a fresh new day, and things will be better. More

often than not, it usually is too.

I won't give you medical advise. I'll leave that up to the other

CML'ers that have a great working knowledge of protocols etc. I just

wanted you to know that you are not alone. I think all CML'ers and

their caretakers have the " down " days. (it goes with the territory)

Please just know that there is a big CML community of people out

there who love and support you. A big hug is being sent your way.

Best Wishes,

Lynn (Snickersunny)

Dx'd 12/03 w/305,000 white count

PCRU

Zavie #692

400 mg Gleevec

> Hi all,

> It has been awhile since I posted. I have shared before that my Dr.

> told me he saw no need to do a Pcr that a Fish was good enough. My

> last fish is Nov 04 was 0.07% to the best of my knowledge I can't

> find the test results. To make a long story short I returned again

> for my 3 months vist last week and he agreed to a pcr quantitative.

I

> am going to have it done at Mayo this week. My question is should I

> still be having a fish or forget the fish for now. My Hemoglobin is

> down and he put me back on Procrit again. Today I am very weak

> feeling and my toes are cramping and some diarrhea. I guess side

> effects from Gleevec and Procrit. Any suggestion I have some

> magnesium and calicum, but I'm afraid more diarrhea. I am not

> complaining about the Dr. I really do like him, but he worries me

> when I have to ask him for tx that others are getting. I hate to

come

> on and start complaining I am having a down day. Thanks for

listening.

> Joan

> ville, Fl.

> dx'x 8/4/03

> Gleevec 400 mg 8/8/03

> ccr 3/28/04

> Zavie's #662

[Guest guest]

> My question is should I

>still be having a fish or forget the fish for now. My Hemoglobin is

>down and he put me back on Procrit again. Today I am very weak

>feeling and my toes are cramping and some diarrhea. I guess side

>effects from Gleevec and Procrit. Any suggestion I have some

>magnesium and calicum, but I'm afraid more diarrhea. I am not

>complaining about the Dr. I really do like him, but he worries me

>when I have to ask him for tx that others are getting. I hate to come

>on and start complaining I am having a down day. Thanks for listening.

Hi Joan,

With you being CCR, a quantitative pcr is a good test to follow your

progress. I think most cml specialists would say have a bmb with a

cytogenetics test once a year to check for any other chromosomal

abnormalities. I don't think you also need FISH....the pcr will be more

sensitive at this point. You seem to be doing well....except for the side

effects and sometimes that just takes some experimenting. I use Procrit and

it occasionally causes diarrhea the next morning but then I just use Imodium.

Also, I wanted to say that you should not necessarily compare the testing

you are having with all the tests that some of us at major cancer centers

seem to be getting. I see Dr. Druker and he does everything when I see

him.....bmb/bma....FISH....pcr.........but he is also collecting specimens

for research and using some of this information for research purposes (with

our permission). I don't think it is necessary to have all this

done.......but how can I turn the guy down! with all he has done for us!

If he can get it, he actually takes an additional vial of bma for his

research.

If you are not as a major cancer center doing research, I think it is

adequate to have regular CBCs (every 4 weeks or so), blood chemistries

(every 2 months) and maybe the pcr every 3-6 months, with an annual

bmb.........that would be what I would want. The point is just to catch any

changes early on and then monitor them or adjust treatment. Hope this info

is helpful for you.

C.

Dr. Druker's patient since Feb. 2000