7 replies to this topic

[Kellyb333]

Hi, I'm Kelly. I have been following for some time, but haven't posted. I was dx April 2014, WBC 499,000, my spleen took up two thirds of my abdomen. I responded well to treatment, 600 mgs Tasgina, then my platelets fell very low in 7/14, My dose was lowered to 300 mgs. I tripped and hit my face on a corner of the wall. After a few days I had a vitreous detachment in right eye, I was off treatment for a few weeks, was lowered to 150 mgs along with a platelet transfusion! Then in November my left eye started hemorrhaging, he took me off treatment and my PCR went back to 100%, the lowest it got through all of this was 46%. In December my oncologist didn't know what to do with me, he was scared it was the medicine, my spleen was growing again, my WBC was up to 36,000 and PCR at 100%. I had eye surgery in January also. Someone gave me Dr Cortes email and he was able to see me at the end of January. I have been on 300 mgs of Tasigna, on 4/2 my PCR was at 27.5%. The last month I have had vision problems, like my eyes are suspended in liquid, hard to explain, and my heart beats so hard it wakes me at night. I went to my PCP today and had an EKG, she sees a little QT prolongation, and is sending me to a cardiologist. She just wants to be sure if she is right! I'm not sure if I should wait to let Dr Cortes know now or after seeing cardiologist. It has been such a stressful year, I am praying these things even out! I am a 54 year old female.This page has helped my so much! Thank you

[Trey]

That has been a tough year.  The right eye accident was a terrible thing for you to go through.  The left eye hemorrhage you also mentioned could have just been the standard subconjuctival hemorrhage that many of have had, and although they look bad they are really nothing much to worry about -- was it that or something more? 

 

Your PCP and cardiologist can handle a "small" QT prolongation issue, but if it is more significant you would want to switch drugs.  Switching might also improve your platelet condition.  So you would want to inform Dr Cortes of what the docs find, and maybe Bosulif would be better for you.

[Kellyb333]

Thank you Trey, the eye had a vitreous hemorrhage and retina tear, I had no vision for 3 months, until the surgery. They think is was the blow to my face and low platelets that caused it. Now my vision is just not right! I will confess that for the last 2 days I only took half the dose and my heart pounding and eyes were better. Today I did the full dose and my eyes are acting up again, pressure behind them!

[JPD]

Do you remember what the QT # was - I have a friend who is a cardiac PA and she said the number "they" worry about it a bit higher than the number a PCP might worry about.  If it were me, Id call my Onc ASAP and at least discuss.  Keep on fightin'.

[Kellyb333]

Thank you JPD, I don't know the #, but I will contact him!

[Trey]

So both eyes were apparently damaged in the accident?  (I assume you understood my hemorrhage question was about the left eye, not the right one you described.)  The Tasigna is working "just OK" at half dose, but it would be better to switch drugs if that allows higher dosage for you, especially if you still have very low platelets and continued QT issues and arrythmia.

 

Tasigna and all TKI drugs will deplete minerals required for heart electrical function such as potassium, magnesium, calcium.  You might also want to increase your intake of these minerals.

Edited by Trey, 03 June 2015 - 06:12 PM.

[chrissy778]

Kelly keep your chin up, just a little bump in the road, you are Irish so we know you are tough. Keep fighting you will get your numbers down once you get on the right dose and the right medicine....

[Kellyb333]

Thank you all so much!! I will let you know how it works out! I'm so thankful for this group!