You are here

At last news from Basil from RSA

Hello all,
It has been 21 weeks since I last posted my findings on eye bleeds
Well since that time I have had 2 minor ones that cleared in max 2 days. So Iam still on my strong cuppa coffee first thing in the morning.
I have now been on Gleevec for 3 years and have been very fortunate to date. No major side effects except for peri orbital swelling.
Reliable PCR tests were only established here a couple of years ago. My bone marrow was used in the trials.
Results at present:
5/4/2005 BCR/ABL undetected BCR/ABL:GUS undetected
1/8/2005 BCR/ABL undetected BCR/ABL:GUS undetected
17/1/2006 BCR/ABL undetected BCR/ABL:GUS undetected
19/10/2006 BCR/ABL undetected BCR/ABL:GUS undetected
I am on 400mg per day and normally take my pil at night with supper.
During 2004 I was on 600mg per day as my results were on the up. After 6 months I reduced my dose back to 400mg per day, and only later informed my Docter. The side effects were becomming intollerable. Regular eye bleeds, swollen eyelids, bone pains etc.
Well he accepted my decision on condition that my results did not deteriote. The above results speak for themselves.
I will be seeing my Docter next week,so I trust all is still in place.
BOY! I AM BLESSED
Love to you all
Basil

Well done Basil - whatever you are doing is obviously right for you. Good luck for your next visit and wishing you a PCRU 2007.
All the best
Elizabeth

Thank you for your kind words Elizabeth.
I can only add that I wish all patients a wonderful and sucessful year in fighting their "condition".
Basil

Basil,

By eye bleeds, do you mean actual blood or having red eyes?

I'm pleased that you have managed to find the solution. It is quit often the patient who has to suggest something!

All the best

Phil & Babs

Yes Phil & Babs the white of the eyes fill with blood due to a vein bursting. It is not a serious condition and fairly common amongst Gleevec users. It can look quite scary and comes in handy at Holloween time. I found that it did not affect my sight at all.
The blood is under the surface of the white of the eye and depending on the severity of the bleed it can take anything up to a month to fully clear up. A sharp mild pain is often felt as the vessel bursts. I found that when the eye is busy healing the colour changes from red to yellow to white. This only occures in the whites of my eyes.
Thats my experience, and I trust it answers your question.
I agree that suggestions may come from patients but the word of the Docter is final.
Kind Regards,
Basil

Basil,

Yes, similar to my condition - has happened now whilst flying. As you say, it doesn't hurt makes you a bit scary. It happens to a lot of us on Glivec but a small price to pay for good blood results.

Phil & Babs