Re: Lynn and the big edema issues!

[Guest guest]

Lynn:

What you said about Dr. Druker, does not even sound like him at all.

I say that because I see him every six months. And side effects...I

had all the common ones, the not so common, the rare and the almost

rare ones!!! I have not known him to dismiss any of them...he seems

so pro quality of life...anyway, this is not to say that this did not

happen. Will you be seeing him again? Perhaps your doctor could

talk with Dr. Druker since you did go out there for a consult. Also,

Carolyn, his nurse, knows what to do for each side effect (even knew

what to do with me and I was complicated!!) The only side effect

that I was lucky to avoid completely was the skin rash---I am very

thankful for that! I have not had a trasnfusion since November

16, 2005--so I have a lot to be thankful for! i think that if there

had to be a queen of side effect...it had to be me!

I have been a challenge to him needless to say! I am still on

Gleevec. I am taking 300mg...per Dr. Druker's request.

This has been a wonderful summer and relaxing and enjoying it! I had

my first wonderful classroom of Kindergarten children in five years!

Has your Potassium level been taken lately? That also needs to be

monitored!

With the edema, the only thing that REALLY helped me was elevating my

feet almost all the time except in school---even then I would just

sit!

Hugs,

>

> Hi ,

>

> Thanks for writing back about this subject. I hope you are doing

> well! Are you still on Gleevec (reduced dose) or on BMS? Are

you

> getting to have a nice summer break from teaching? You deserve a

> good rest after everything you have been through.

>

> Yes, I have been taking a potassium pill once a day since starting

> Lasix. I also make sure I eat potassium rich food regularly. My

> levels are also monitored regularly and are great. No problems,

> luckily.

>

> I have had many tests done to make sure it's not an underlying

> condition... like diabetes, thyroid, cardiac, GYN, etc.. and

> everything has come back normal.

>

> I am also aware of the strength of BMS and AMN and it's side

> effects. Gleevec is working great for me.. except for the edema..

> So, I am just going to work with my reg Hem/Onc to figure this one

> out. Nobody said having CML was easy right? Just have to keep on

> keeping on..

>

> Thanks again for your input. I really appreciate it.

>

> Sincerely,

>

> Lynn