I have recently enrolled in Dr Marin's Survey for patients on long term Glivec. My first visit to him will be on 22nd December where I will have to complete an questionnaire and have the usual blood tests, with one extra "tube" I think to test for Glivec levels. The next will be three months later. Has anybody else enrolled in this? I would like to have an idea of how long the two visits will take (we travel and have to put money into the car park machine- pay & display)the second visit sounds particularly lengthy.
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long term side effects of G|ivec - HH Survey
Hi Des - I have been part of this program and did June through August
they take more than 1 extra blood sample, ISTR counting 16 bottles on the first trip!!! and the 2nd visit I had to swap arms as I had dried up :)
The extra tests they did (on the 2nd visit), an ECG and an ultrasound didn't take long themselves but you had to get around the hospital, together these added about an hour to my visit. Both visits there was a questionnaire to fill in which took 10 mins and on the 2nd one an eye test which again was about 10 minutes.
So I would bank on an extra 2 hours for the 2nd visit and maybe an hour for the first.
That was at least my experience anyway :)
Hi Rob,
I'm on this program also. I'm seeing Dr Marin on November 5th. Oh no, not 16 bottles of blood oh my, I'm not looking forward to that!!!!!! Going to discuss my eye bleeds also, as they are becoming more regular. Haven't been on here for a while. Hope all is well with my friends. I am coming to the seminar, so hopefully catch up with you all then.
Take care
Angela
I had a similar experience to the others above - Echocardiogram/Ultrasound, ECG found I had a low heart rate at 59 per minute. Told I must be fit! Eyesight test all OK. Dr. Marin started me on Calcium & Potassium as my levels are now too low. Glivec induced I was told.
Best Wishes,
Phil.
Hi Des,
Maybe you could ask the HH patient support group to take this subject up with the Hospital managers? It is really costly. Otherwise you could ask if you could get a note from the haematology administration office (Lorraine Armstrong: l.armstrong@ic.ac.uk)to allow you free parking as you are taking part in a study.
No harm in asking ;o)
I know they do this for transplant patients for a short period when they are being monitored and have to visit the hospital more often.
Hope you are doing well ;o)
best wishes,
Sandy