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Facial Swelling with Dasatinib

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Hi All,

Has anyone experienced facial swelling while being on Dasatinib. If yes, what are the ways to reduce it. Is this temporary or permanent. 

Thanks

Very sorry to have to be the one to tell you this:  it's pretty much common and yes, permanent.  And, worse, there isn't really anything to be done about it EXCEPT for reducing the dose.  That can really help, although at 20 mg dasatinib, I still have some puffy eyes and bags.  However, all of this is much worse for imatinib people!  The reason for it is (simplified) the dasatinib hits off-target stuff, in this case through PDGFR, the ability to regulate the fluid balance within and without cell walls.  This shows up in the areas of the body where there are the least firm or stiff walls, like the area around the eyes.  Collagen is also hit and its ability to "hold things up" is diminished.  You might see more wrinkles and general bagginess.  Sorry.

Hi, no I have not had any facial swelling at all .I did have the hooded eyes look when I was on Imatinib but when I changed to Dasatinib it disappeared within a few days as if by magic .What dose are you on ,is it too much ?

Hi SS86, Kat had explained it spot on. I didn't really understand the reason, until I read Kat's reply.

I am on Dasatinib 20mg, feeling good, but yes, complete with puffy eyes and bags....don't like it at all.

Still, as there is nothing we can do about it, I suppose the way to look at it is that it is a very small price to pay for that little Miracle Pill!

pigeon.

Thank you so much for the detailed response.. this is really helpful.. though not in favor :( the face has swollen n eyes are puffed at times.. it’s not the same.. 

Thanks, 100 mg is the dose

Indeed, the explanation seems spot on.

Oo 100 mg ,probably that could do it .How long have you been on that dose and what is your BCR  ABL .Were you On Imatinib first .

 

It's been 8 months now. Dastinib from day 1. Thanks

What is your BCR ABL record,it could be time for a reduction.

49% to 0.5%.. but doctor told us that the dosage might not change for years :(

0.5 is brilliant ,you don't need to be on 100 mg now, not change for years is absolute rubbish  it's too toxic  .50 mg is more than enough maybe even 20 mg .Less is more with Dasatinib,look at recent research and take copies into your doc to read. .I take it your doc isn't a CML specialist as mine isn't .Dont be afraid to have the conversation and ask for a reduction ,it's your body don't suffer or put up with stuff .Be brave , Good Luck .

Well, you certainly want to get to 0.1 (MMR), but it is also true that dasatinib is a bit different from the other TKI's in that less MAY be more - there are studies that more than hint at this.  One thing is accepted now, however, and that is: more is definitely not more. There are studies showing that 50 mg is equally effective as 100 mg, and even some that advocate 50 mg as a preferred starting amount.  In the presence of troublesome side effects, and having reached MMR, there is no excuse for not going lower.  You don't want to court pleural effusion (almost 30% of dasatinib users will experience this, but again, this data might be skewed because in former years people were taking 100 mg). So, first, get to 0.1%.  Do the research and find the studies. Discuss the studies with your doctor.  If it's a no go on lowering the dosage, find a CML specialist. Oh, and one more thing, don't let anyone prescribe diuretics for the puffy eyes - completely ineffective and possibly harmful over the long haul.

Hi, 

Thanks for the revert. have consulted 3 hematologists and all had the same opinion. Can you share some links which I can discuss with my doctors next time. 

Thanks

Thanks. have consulted 3 docs and all had the same dose recommendation. While i was hopeful that the dose would reduce that doesnt seem to be the case. One of them was of the opinion that dose would continue for atleast 7 years before we try a TFR,  which was a heartbreak to hear. 

Thanks

Here is one study, with fairly long-term data that supports 50mg dasatinib:
https://acsjournals.onlinelibrary.wiley.com/doi/full/10.1002/cncr.32504

This is the same study, I believe, with earlier results:
http://sci-hub.pl/https://doi.org/10.1002/cncr.31357

I am not aware of other studies investigating the same, so while this is promising it is just one study in isolation. A promising one, but just one. All treatment guidelines still recommend 100mg as a starting point. 

That said, I would advocate reducing dosage in line with improving results but with caution.

David.

Thank you David. Will try to share this with the doctor and convince.