Yes, Regarding An Unusual Side Effect To Imatinib.
I've been on Imatinib 5 months and my upper eyelids are so very swollen I haven't seen my eyelashes for months. Worse though is the fluid filled eye bags under my eyes. I use ice gel packs in the AM, raised my headboard, ophthalmologist has tried everything but we know it is chemo related. I've even slept upright which may or may not help. Anyone else having this issue?
Brenda, I have the same thing, but it usually seems to go down during the day. Cooling it down seems reasonable. Are they less swollen during later in the day? We have been on Gleevac almost the same amount of time. I have to tell you that during the last week I'm almost back to normal. Just a little fatigue (which may just be my body being so out of shape for not doing anything for so long), and no nausea for about 2 months. Still swelling around my eyes, but that is getting less. I'm hoping that the worse is behind me. I took another ABL test but won't find the results for a few more days. Hoping for the molecular change soon. My hematologist said that when it is achieved I will take Gleevac, but half dose (200 mg). Fingers crossed.
Hello, Mario here. I did not have issues with my eyes, but the right side of my face swelled so much that my jaw could no longer close. This side effect, combined with a noticeable swelling of the right arm and day long, painful leg cramps, convinced me and my oncologist to stop Imatinib. I have since started Bosutinib, which looks promising, but only time will tell. All the best and best wishes of a better treatment.
Daryl13, I saw my eye dr for 4 months and we tried everything.......restasis for dry eyes, which i can't afford but didn't work any better than Systane OTC drops. We tried antibiotics to no avail. Sleeping with two pillows and in recliner or sleeping sitting up all night helps but I don't rest well that way. I'm a side sleeper. Last resort, my oncologist sent me to PT for massage therapy to reduce the edema, not the fluid. My fluid not sticky but almost a little oily. No crusting or sticking together. The therapist gave me exercises to do (I also found them on google and they help). I can almost see my eyelashes which I have not seen since last August. Some days are better than others. But nothing helps the fluid filled sacs under my eyes as they even stick to my glasses some days. imatinib had me send photos of my eyes to them but offer no advice. I believe this will last as long as I'm on this TKi. Look on google this is what my eyes look like:
severe peri orbital edema secondary to imatinib Let me know what you think. I hope yours are not as bad as mine, but i remember my blood work is getting better and pray prognosis is positive so this is just vainity.
Okay everyone........I appreciate your responses. I continue to deal with what we are calling it severe peri orbital edema secondary to Imatinib. It is not getting better and so far has not affected my vision. i just look a FRIGHT! Look it up on the net and you will see what I'm talking about. It is not just puffiness! I have fluid filled bags below my eyes which touch my glasses. The eye lids are puffy and haven't seen my eyelashes for months. The imatinib is working as all labs and test are looking good. Please pray I can stay on this tki because i know what the side effects are and really don't want to come off it. If it affects my sight, then no question! I can deal with the GI issues, fatigue and leg cramps but the eyes are a challenge.
Brenda, when I started imatinib, my doctor also put me on allpurinol ( anti-gout) to prevent and or control swelling. I didn't love the combo, but I didn't swell. I have only been on any meds since 8/14/23.
Been Recently Diagnosed With CML In The Cronic Phase. Im Currently Taking Sprycel. It Sounds Like The Other Medication Has Better Survival
How Soon After Starting Imatinib Did Your Side Effects Start?
Yes, About Side Effects Of Imatinib