Visit with Dr Druker

[Guest guest]

Hi all, I had a visit with Dr Druker this past week and it was very

interesting and informative. I had posted before about being

concerned because my doctor was calling me a " slow responder " to

Gleevec--I have been on it 5 months and my counts are still not

normal. I was concerned that there was something wrong.

Dr Druker agreed with me! He said that with my disease in such an

early stage, I should have responded to " waving a Gleevec tablet

under my nose " basically, and that there had to be a reason why in 5

months I have not responded better. He took blood to test for ABL

gene mutation causing resistance, and also did a blood level (trough)

to see if I am perhaps not absorbing Gleevec properly. He said that

in 8 years of using Gleevec on patients, he has only seen 3 not

respond almost immediately (or within 3 months) to the drug. Two of

these were caused by drug interactions with meds they were taking,

and they corrected immediately when he changed their meds.

He said that if I am resistant to the drug due to a gene mutation,

then I will need to go to bone marrow transplant right away. He said

that a mutation of that sort would likely cause resistance to Sprycel

and other drugs of the same type as Gleevec. I am praying that that

is so rare that it could not possibly be the case for me.

We are also looking at possibly a gastroparesis caused by my

diabetes, which could cause a malabsorption syndrome--not absorbing

the drug correctly, which could mean I am not getting high enough

blood levels of Gleevec for it to be effective. A workup with a

gastroenterologist is the next thing to figure this out.

I was so very impressed with Dr Druker and his ARNP, Carolyn. I felt

like I was the only patient he had. He spent an amazingly long time

with my husband and me, going over all my symptoms and the course of

my illness thoroughly and completely, listening carefully to all our

questions, and in general just being a real sweetheart. I can't

imagine a better doctor to go to with a serious illness like CML--he

obviously truly knows the illness and its hallmarks and can see into

situations with intelligence and understanding based on his

experience treating many patients and doing the research.

Many thanks to for sending me in this direction (to seeing Dr

Druker). I believe it definitely improved my care and perhaps has

huge implications in other ways, too. I will keep you all posted on

what we learn.

Vicki

[Guest guest]

Hi Viki

I have severe gastroparesis due to cancer of the esophagus surgery I

had 18 years ago. When I started Gleevec 400, 2 years ago, the

gastroparesis worsened. My onc was convinced it was not the Gleevec

since no one had upper gastric side effects. I however knew it was

since I could keep NOTHING down and started loosing weight. I was

stable with the GP for so many years until the Gleevec...I worried so

much about absorbing enough of the drug since I vomited everything I

put in my mouth.But I did not want to stop the med.I was however

responding to Gleevec so it must be absorbing. Of course, what should I

do now. The gastro doc said stop the med. At that point I lost over 20

lbs (6 months post gleevec),which was<90lbs and now was dx with sever

malnutrition. A weight management specialist intervened and put me on a

Picc line w/TPN feedings for 4 months.

During that time, July 06 I became PCRU! Since July I remain PCRU and,

kept on most of the weight (20 lbs). I also started taking Domperidone,

which increases stomach motility which helped alot. It is not

avavailable in US can be order on the internet from New Zealand.

Hope this may help, Gastroparesis is avery complicated disease.

This is my email address (I posted under kids account)if you have any ?

ellunpark@...

Ellen P