Hi all, As Imatinib has stopped working for me after just over a year I have been on Dasatinib for a week and I have to say I feel great on it.I was so scared of changing over.My energy levels are so much better ,I can walk with a spring in my step,I don't need to nap in the afternoon and I don't drop off in front of the telly in the evening.My eyelids had become quite hooded, well the swelling has gone down a bit so now I can see my eyelids.I have started on 50mgs as Scuba recommended and taking Magnesium morning and night ,I have a bit of a headache when I wake up but by the time I have my one cup of coffee of the day and get going it's gone .No sick feeling and no diarrhoea ,touch wood.I just hope I don't get the bad side effects as time goes by .So anyone thinking of changing but worried like me maybe give it a go ,I can't believe the difference in such a short time ,I feel like me again .I just hope it's doing it's job .I see my doc on Wednesday so will see how my bloods are doing .Fingers crossed.Denise.
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One week on Dasatinib and I feel great
Denise that's great to hear. Look forward to a good PCR result.
Hi Alastair,I haven't got a clue what my blood is like since November.I mentioned to you that I had a few rises in my BCR-ABL and wanted to see a specialist consultant .I went there in January they took bloods and I specifically asked if they would do a BCR - ABL ,when I rang for results they had done a full blood count but not bothered to do the most important one so I was really angry and upset.I had a bone marrow test done end of January ,saw my usual consultant middle of February and still I haven't been informed of any results.Dasatinib had to be ordered in for me specially so I didn't get them till last week.So my blood has probably still been rising since November and now it's the middle of March .I see my usual Doc next week so who knows what I am going to find out .
Felix - Happy for you on the easy switch to Sprycel - it was like that for me, too. I think you are probably not going to get any new side effects if you have none now, with the exception of possible pleural effusion showing up later. It can occur a few months to a couple of years in, but it will be interesting to see if you can avoid it by having started at a lower dose. Hope so!
I started at what was then the standard dose for dasatinib, 100 mg, but I didn't stay there long. I was in transition from one onc to another, one center and lab to another, and I had a very, very good initial response to Sprycel, so it was decided to try and tackle the remaining myelosuppression by lowering the dose to 70 mg after a couple of months at 100 mg. That dose did indeed vanquish the myelosuppression and I was still continuing a downward trend with the CML. All was well until the pleural effusions. When I came back on Sprycel after one of them, we lowered to 50 mg. (My PCR numbers continued to fall, allowing for this option.) Now, at year 10, I have minimal residual fluid around one lung, am on 20 mg Sprycel, and the past 4 or 5 PCRs have been 0.005. Still, keeping my fingers crossed, on all fronts. I have good energy, no aches or pains, no GI disturbances upper or lower, no headaches or rashes, good skin color, no depression or anxiety. I'm still puffier-faced/eyed than 10 years ago, but nowhere NEAR what it was on Gleevec, and it's probably more kidney-related than dasatinib. So, I predict smooth sailing for you in terms of SE's. Just be on the watch for pleural effusions, that's all.
Come a cropper. Haven't heard that since my Daddy died. He was from Dayton and my mother was from Columbus.
Ah, Denise, of course - I forgot I was on the British site, since I monitor both. Well, come a-cropper is also a Midwestern US saying, or at least it was in my parents' day. (Dayton and Columbus are in Ohio.) Isn't this delightful! I'm sure it means failing to pay proper attention to a plow or something and falling off machinery or screwing up a row of plantings. CML farmers out there, enlighten us!