Re: Going to the Mayo Clinic

[Guest guest]

,

Check the recent archives...a message posted by Dan Lake on 2/4 had some

WONDERFUL suggestions for getting the most out of doctor's appointments. Also,

how long have you been on the MTX? It can take 3 months to really start

working.

in VA

[Guest guest]

Hi Cheryl -

I was treated at the Mayo Clinic (another rare condition) and it was the best

medical care and treatment that I have ever received. They treat the whole

person, not just the disease. I am currently working with staff from the Mayo

Clinic on an event with LLS and they have been extremely involved and

supportive. When I was admitted to the hospital last September I had to choose

between Mayo and another hospital system here that is #2 for cancer care but

closer to my home. I went there only after Mayo gave their seal of approval. I

would not hesitate for one minute to go to Mayo if I had a mutation now or any

complication that needed specialized care.

Pat in Phoenix

>

> Hi - my name is Cheryl K.(yes - another Cheryl) and I've been lurking for a

couple of years. My CML was diagnosed in March of 2007. I've been in and out

of remission as my onc and I try to figure out the maximum dosage of Gleevec vs.

side effects. Right now I taking 500 mg over all by taking 400 mg one day and

600 mg (a pill and a half) the next day. I can live with the 400 mg - side

effects wise (except maybe the fatigue), but not so good on 600 mg. As of May

4th, I was undetectable per my latest fish test. So I'm back into remission

once again. Zavie - may I have a number please?

>

> Next week I have an appointment at the Mayo Clinic in Rochester, MN to consult

with a specialist. I am seeing Dr. Hogan. I hope to learn more about

my CML and how to cope with it. I know I have an unusual mutation of the

Phildelphia chromosone(at least one that U of MN labs hadn't seen before). So I

hope to learn more about that. Also at 61, I bring a host of other medical

issues to the table so it will be good, I think, to look at the whole picture.

>

> Has anyone been to the Mayo? If so, what was your experience?

>

[Guest guest]

Thanks for the words of encouragement, Pat. I have no doubt that the Mayo is an

excellent medical center. I just want all issues taken into consideration when

I consult with them. I hope that will happen. Right now, my experience is that

my onc tends to look for things other than Gleevec as being the cause of some of

my side-effects (and I'm sure that's true.) And then when I see my family

practioner, he thinks the cause is usually Gleevec. I feel caught in middle and

consequently nothing gets figured out.

Cheryl K.

> >

> > Hi - my name is Cheryl K.(yes - another Cheryl) and I've been lurking for a

couple of years. My CML was diagnosed in March of 2007. I've been in and out

of remission as my onc and I try to figure out the maximum dosage of Gleevec vs.

side effects. Right now I taking 500 mg over all by taking 400 mg one day and

600 mg (a pill and a half) the next day. I can live with the 400 mg - side

effects wise (except maybe the fatigue), but not so good on 600 mg. As of May

4th, I was undetectable per my latest fish test. So I'm back into remission

once again. Zavie - may I have a number please?

> >

> > Next week I have an appointment at the Mayo Clinic in Rochester, MN to

consult with a specialist. I am seeing Dr. Hogan. I hope to learn more

about my CML and how to cope with it. I know I have an unusual mutation of the

Phildelphia chromosone(at least one that U of MN labs hadn't seen before). So I

hope to learn more about that. Also at 61, I bring a host of other medical

issues to the table so it will be good, I think, to look at the whole picture.

> >

> > Has anyone been to the Mayo? If so, what was your experience?

> >

>