Gleevec Holidays

[Guest guest]

Dear Barb,

You have such a close relationship with your doctor in Lyon, France and he

is sensitive to your needs and recognizes your knowledge and input as valuable.

I think you have also worked on projects with him and you have earned his trust.

I do remember when you were on the Ara-C combo and you didn't fare very well

with that.

I understand how you felt about getting off Gleevec for 10 days, in our

minds a lot can happen in that time. Maybe you still had enough Gleevec in your

body to arrest any further decline, so you relatively remained the same. When

you change drugs, there is always a washout period of at least a week, and

anything less than that could create a dilemna, by mixing two powerful drugs

together - full strength. I did hear of someone who went from one to the other

in just a few days and had a very bad reaction. Thanks for sharing that, your

input is always helpful. Your experience is backed by your doctor's approval,

but I would be afraid to try something on my own, unless I had a scientific

basis for it and I thought the doctor was making a huge mistake. Sometimes we

have to make a judgment call on our own.

You must feel terribly isolated from the CML community in France, except for

your relationship with Rees and a few others you met at conventions in

the UK. I hope everyone realizes how sequestered you must feel, not having the

opportunity to have physical contact with other CML patients that many of us

have had. Do feel you can direct your posts to any individual, then it becomes

more personal and less awkward. Over the years, I have learned much about you

and know how you devote your time to different causes on behalf of CML and your

children's school projects. I think it is to unique to be from the UK and had

the distinction of being elected to a community organization to make services

more available to others in yet another country. I thought opening the door to

a small portion of your life would help others to know you as I have, a very

warm, hospitable and caring person, so I hope you are not embarrassed that I

spoke of you so glowingly.

I have not forgotten that when I was staying in Houston, you reached out to

me and called from across the big pond to encourage me and lift me up. Just one

of the nice things you do for people. My best wishes go with you and your

family always,

Lottie