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Does reducing Gleevec dose help with facial/eye edema?

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I was diagnosed March 2016 with chronic phase and have been on 400 mg Gleevec.  I have had positive results with Gleevec; the past year: May 2017-.11 IS,

Aug 2017- .05 IS, Nov 2017 - .06 IS and Apr 2018 - .03 IS.  I have an appt. with my Onc this coming Monday and will ask for a reduced dose of Gleevec.  The worst side effect that I have is facial and eye edema, which is what I wake up to every day as a constant reminder of my disease.  My eyes being the most swollen; which for me I feel like I'm not all there.  Has anyone who reduced their dose have improvement with edema? I'm also wondering how much to reduce my dose.  Not sure if my onc. is on board with this but she isn't taking the tki, I am.  Any thoughts?

This was my biggest problem with Gleevec.  It is so ubiquitous, that you can pick out people in the blood disorders crowd just by their "Gleevec eyes."  In my experience, reducing the dosage helped a little.  But it really didn't change until I switched to Sprycel.  Even now, there's some.  I look different (tired, drunk) but not nearly as much as on Gleevec, when I was, literally, unrecognizable.  Absolutely nobody in the medical establishment cares one bit about this, so you are totally on your own in the misery.  (Except for all of us, of course!)  The fact is, your entire feelings of well-being, your strength to carry on, are so tied to your appearance - it's just a human nature fact.  And when you look in the mirror, or see other peoples' faces when they look at YOUR face, your identity and integrity are so shaken.  You "dis-integrate".  It has enormous repercussions for your psyche and ability to fight and be cheerful.  But, I am telling you, there is no doctor who will care one bit about this, as there is no solution they can give you - no teabags or cucumbers on the eyes, no creams, no diuretics.  As long as you are on Gleevec, this is your new look.  I think the culprit in Gleevec is the PDGFR kinase that is a collateral hit.  Bosutinib doesn't have that (Sprycel does, to a lesser degree than Gleevec), so I would think the eye edema would be best on Bosutinib.  Maybe we'll hear from Bosutinib people on this.

Hi there

My husband just reduced his dose of dasatinib from 100 to 50 because of the eye endema. it was truly getting him down. He is very private and has told very few people and he just felt people were looking at him and wondering what was up. In addition to the puffiness, they were also very itchy.

You are so right Kat that it was a very visible badge reminding you all the time that you had leukemia.

Its not gone completely in the last month but is so much better on the reduced dose and overall he feels much better, mentally and emotionally.

My husband's oncologist is very caring but I took the research paper to him showing that the 50 mg dose had been shown to work and that persuaded him to reduce it. A month in despite my worries, blood results are good so I encourage you to try it. Worst case scenario you need to go back up again but hopefully the lower dose works and less endema.

My husband is also taking curcumin for the inflammation - he was taking 8000 mg but doctor told him to reduce it to 5000. Hoping that also reduces endema . His skin is looking great - far better color and almost glowing so that is a big plus.

bestof luck, Louise

My facial edema with Gleevec has caused a line inside my mouth where I guess I’ve bitten the inside of my cheeks inside my mouth. I had an eye doctor ask me if I bite the inside of my mouth. My response was no, not intentionally, it’s just from the facial swelling with Gleevec. I guess the inside of my mouth isn’t big enough to accommodate the inward swelling.

My husband’s oncologist was checking to make sure he didn’t have a stye ( !) when we described the eye edema he has had on Sprycel. He is super caring and insisted on prescribing eye allergy drops,  but I don’t think oncologists are always aware of TKI side effects........

I have had to hold my upper cheeks down in order to see to walk sometimes.  They do not believe you, they do not care, there is nothing they can offer.

Was at the Hem/Onc on Monday; of course she doesn't notice the swelling even though my eyelashes are non existent; curled into the eyelid.  Asked about dose reduction; she doesn't believe in reduction only increasing if numbers aren't good.  I have very few options of tki's because of my severe emphysema so I'll stay the course with gleevec.  I don't go back for 6 months; was thinking about cutting my pills in half and see how it goes or wait until my results come back in November.  My husband says I should get a second opinion; but not sure who to go to.  My PCP is the one that recommended my current hem/onc. with the Cleveland Clinic. Generally I have not been a risk taker but I'm on the fence about going rogue against my doctors orders.

 

 

Bronson - We can all relate to that feeling of wanting to go rogue every once in awhile!  When you don't feel listened to and you're miserable, and it looks like nothing but more of the same . . . FOREVER.  However.  I looked back at your original post and your course really looks very nice - you're in a good safe spot below MMR, and all your responses have been timely.  I guess I would counsel pushing a little harder for a dose reduction.  I definitely noticed the difference between 400 and 300 (even better 200 - felt pretty darned normal there) when I was on Gleevec.  Maybe this would be enough to help you stay the course.  Unfortunately, it's never a good idea to go rogue.  It's better to keep the trust thing going between patient and doctor.  I have "fought" with mine over a Sprycel reduction to 25 mg to avoid another pleural effusion - he's adamant that drug resistance can be developed even with Sprycel if the dose is too low.  But we argued and discussed until we got to an agreement or compromise - I never could quite bring myself to deceive him. 

Anyway, I believe the going trend in clinical practice is, once MMR is firmly established and stable, it's OK to try reducing the dose in the face of intractable and intolerable side effects.  Good luck.

Thank you Kat for your response.  I'll wait until my next appt. in Nov. and if my numbers are still good; try pushing a bit with my onc for dose reduction.

If they’d just acknowledge the side effects exist and they don’t have much to offer for the side effects would go along way with me.

Use ice pack 3 to 4 times in a day ,to exercise to sweat a lot,do sauna.share the result after three four days