I think I am experiencing facial edema from Sprycel. I am not super concerned with the cosmetic aspect of it, it seems to be pretty mild from what I can tell by looking at photos. However, I have this strange sensation of heaviness or fullness feeling in my cheeks and upper jaw area, has anyone else ever expirenced any feelings like this TKIs? It is quite annoying sensation I’ve been dealing with nearly all day this whole week.
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Facial Edema Sprycel
Yup. Not nearly as bad as on imatinib, however. Some days better than others. Chagrined and chastened to admit that salt indulgence directly and noticeably enhances it.
Thought I’d chime in, I have been on Imatinib for almost three years and have puffy eyelids from it. I have tried many products that claim to reduce puffiness but to no avail . It’s one of the effects of TKIs that have to be endured, wearing glasses help hide it but if you are a woman it means no more eye makeup!
John - No, nothing has ever made a difference (beyond not overdoing on salty food). It is just so very, very much better on Sprycel than on imatinib that I was enormously grateful to have anything of the way I used to look come back, and so I think I've just gotten used to it. I must say it's very frustrating to have an increasing need to build up the shape of my hair on the top part of my face in order to counteract and balance and hide the heavier lower part just at the point in my life when all my hair is going. You can't back-comb nothing! lol. I have felt better after trying to keep a really tight smile on my face, clenching my cheeks for a few minutes at a time, but one feels ridiculous . . .
You should get the strange feeling checked out, though. As DebDoodah (I think) pointed out, it could be a problem with salivary glands.
Benedicco - There is nothing that can be done about Gleevec Eyes. Nothing works except getting off Gleevec. It is much better on Sprycel; I don't know about Bosulif; Tasigna is very similar in make-up to Gleevec, but I don't know if the toad eyes are the same or better. You can always spot the Gleevec users in photos in LLS publications! One other thing, regarding the makeup - remember that dark recedes and light comes forward, therefore the WORST thing you can do is put highlighter or light concealer on your undereye bags. Also, if you put dark shadow on your upper eyelids, well up beyond the crease (usually a no-no) the "fat lid" look will recede and your actual eyes be more noticeable.
Reason for all this misery: "PDGFRD in dermal dendrocytes increases interstitial fluid pressure in the dermis, predisposing to edema. The lack of structural support in periobital tissue, particularly the lower eyelids, makes it exceptionally vulnerable to increased edema."
Just wanted to give an update on this sensation eventually got way worse lasting all day and very intense, after MRI, spinal tap and seeing Dr. Kantarjian at MD Anderson this appears to be just a new side affect for me. I took a 7 day vacation from Sprycel and on the 3rd day the sensation disappeared completely for the first time in months. The sensation came back a few weeks after restarting 100mg Sprycel but not as strongly. I may try to drop dose down to 50mg but am a bit timid to do so considering the last time I did this my PCR shot up to .3, I have been in MMR much longer though now so maybe I could tolerate it. My latest PCR was .02 even with the 1 week vacation from Sprycel, which I was very pleased.