Re: what condition my condition is in.

[Guest guest]

Hi Group,

I want to say that I am very glad that we have 'new' voices

speaking up on this list.....and I hope this will be a list for

everyone. Professionally, I instructed others in medical care

for over 30 years, so it is 2nd nature for me. I retired as a

physical therapist just last year. I will do an introduction to

the group later, but I want to address some of 's IM

side effects or other concerns:

1. blood in the urine...and urinary urgency.....I would ask the

doctor to do a work-up again, with the information about the

urgency, sometimes poor control and the pain in your side.

I think Tracey offered you some good suggestions. This doesn't

sound like it is related to CML or Gleevec?? but could be if

all else checks out normal (in medicine this is called 'ruling out

other causes''.) I will tell you that I had a very unusual deep eye

bleed (remember these Margot) and when I asked Dr.Druker if

he thought that Gleevec was the cause, even though it is not

a typical problem......he said " yes, Gleevec is known to cause

hemorrhage " . So, Gleevec can be the cause of some unusual

bleeding, but it also seems to not create a big problem when it

does.

2. Gleevec and tummy issues.....you seem to have more than

your share of this side effect. I am pretty strong into complementary

medicine and work with a naturopath. Gleevec is an acid drug and

I think especially for those prone to the GI problems, it is worth

trying an alkaline diet to offset the acidity of Gleevec. Such a diet

is less meat....more veggies, fruits, etc. There are a couple simple

things to experiment with to see if this might help at all. Squeezing

fresh lemon or lime into your drinking water is very alkaline. Also,

right now I am finding nice little watermelons....they are alkaline.

Anything with 'greens' is alkaline......there are many supplement

options, like barley greens, etc. Juicing of veggies can be a big help.

I don't think we can be on Gleevec for years without doing something

to offset the acidity of the drug.

My own history here is that I was on 400mg for just over a year and

have been on 800mg for about 3.5 years.....and I know that I have

to juice or get alkaline foods in some way.

3. , you are not alone with the memory or concentration issue.

It seems to be a Gleevec side effect.....and about all you can do is

have the little lists to keep track of things.

4. the watery eyes.....my opthalmologist told me to use Vicine AC

every morning....it is a decongestant and seems to help. When he

tested tear formation, it was about 3 x normal. With Gleevec, they

talk about 'small vessel leakage' so I think this is also creating the

watery eyes.

5. a rash can be common with Gleevec......you might try a cortisone

ointment for this and see how it responds. It is an Rx, so you need

someone to write it up for you.............

Triamcinolone acetonide ointment 0.1% has been approved for this.

6. I know what you mean about being so pale! I say that my hands look

'morgue white'. I do find that I slowly get some color....so maybe a walk

in the AM sunshine would help. If it bothers you a lot and interferes with

being more social, you could use a make-up made for medical conditions.

7. Fatigue....I think a key thing is to learn to adjust your expectations and

do small amounts of work at a time. Dr. Druker recently said that the

fatigue can be from some anemia (so check the hgb and hct) or is just

a side effect of the drug. You can experiment with when you take Gleevec.

If you don't already, you could try taking Gleevec with dinner, and see if you

can sleep off some of the side effects. Or you could try splitting the dose

and taking it twice a day? different options work for different people.

8. As Tracey mentioned, if the drug you are taking for depression doesn't

seem to be helping that much, you might try another one. Also, getting

some exercise can really help with depression.

Hope some of this might be helpful......

and thanks for sharing with the group and getting some discussion

going. Everyone has something to add to our 'pot of knowledge'.

C. or Maui Nanc