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Dasatinib (Sprycel) Side Effects

I am now approaching 3 years on this treatment, having been Glivec intolerant, and in the past 10 months have had occurencies of swollen lip - always on top lip and can be either side, to add to the normal puffy eyes. Again the problem appears overnight and, following a couple of anti-histamine tabs, disappears by the end of the day. Assume this to be a manifestation of the odema problem and , in my case, the worst such side effect of this excellent treatment. I am fortunate that Dasatinib has brought my life to a norm without having to suffer many of the problems others experience. Just wonder if anyone else has 'Big Lip' and how they deal with it. Best wishes to all,
Irene

When I was on Glivec and getting swollen eyes, I put blocks under the head end of my bed so that at night, the drainage went downwards - it seemed to help. Don't know about the lip though!

Beth

Dear Irene, I have not heard of this as a side effect of TKI therapy. However, given that it responds to anti-histamine it might be an allergic reaction to something?  Given that TKI therapy can suppress certain kinds of white cells - like neutrophils- it might be that this swelling is the kind that you get from herpes virus? Most of us live with the presence of this virus in some form but it is usually controlled very well be the immune response- i.e the swelling and blisters that transform in to the common 'cold sore' is a case in point.

When there is extra pressure or stress (part of everyday life these days) the herpes virus often shows itself in the form of a swelling that blisters etc. I recently suffered painful swelling and blisters on my lips this summer- I put it down to having too much work to do in too little time... hence the appearance of not one but two swellings which turned into not very pretty cold sores on both my upper and lower lip! My consultant at Hammersmith confirmed it was probably the herpes virus and suggested that next time I let them know and take an anti-viral. He was bemused that I had only used sea salt in warm water to deal with it- but although it took a little longer it went away in the end.

I wondered if this might be what is causing the swelling on your lip? ... 

Best wishes,

Sandy

Hi Irene

Weirdly enough I seem to get the same thing. It is normally my bottom lip and mostly on the right hand side. I had put it down to eating things that were causing a reaction but maybe not after reading your post. I do get cold sores but they are always on the upper lip and feel very different from this type of swelling.

I have been on Dasatinib for nearly 2 years and this has only happened in the last few months

K

Thanks for the interesting comment and suggestions, I should have stated 4 instead of 3 years on Dasatinib - my doesn't time fly!
I have always tried to associate the 'Big Lip' occurrence with recent diet etc. but have not reached any conclusion as to an allergy cause, I do suffer with cold sores occasionally so perhaps it all comes down to the immune suppression side effect. As long as it only take about 24 hours to clear then I will tolerate it - not sure my old bed would take too kindly to elevating ;o).
Thanks again.
Irene

i am on dasatinb have been for 3 years was on glivec for 4 years prior to that

i sometimes have the big lip going on it feels like i have botox ! it happens in both lips, cant really pin point when it happens or why just now and again,i have never had a cold sore

hope this helps

I have the same problem dear and swelled my lips. Tell me what I do I have checked many specialist doctors some time well after some time this problem again started. Let me know the some opinion about that. ------------------- Now a days I am busy in my final testking mcdst exams the problem is now again started its look not well :( I have meet my friend s daily.