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Dasatinib and exercise

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Hi All

I hope you're all safe and well.

Well I've now been moved onto Dasatinib 100mg a day. It's been 2 weeks since I started taking it and I have to admit I feel quite tired.

I managed a steady walk of about 3 miles yesterday and whilst I have been quite active previously when on Imatinib, I now find any heavy exercise exhausting.

Can anyone please tell me if this will improve once my body adjusts to this new medication. I certainly do hope so as I'm feeling quite low right now.

Many thanks for all your advice, it is very much appreciated.

Deni x

Hi Deni,wow 100 mg no wonder you are tired on that toxic dose .Sorry no it won't get better ,what is your BCR ABL ?.I doubt you need to be on that much, 50 mg would be a much better start .I totally refused to go on that dose and started  on 50 mg ,soon got down to 20 mg .Denise .

Hi

Thank you for your reply.

My last BCR ABL was 1.93 % and increasing. Apparently I had a mutation develop whilst on imatinib. I had a BMB done and fortunately no abnormal cells were found and all other blood work was normal. I'm back to see consultant on 1st April.

I'm hopeful we can reduce the dose in the near future if the BCR ABL reduces again.

Take care

Deni x

Hi, hopefully your BCR ABL will reduce quite quickly,if it does please don't struggle on 100 mg for very long ,you don't want to have pleural effusions which can happen on this dose .50 mg for me never resulted in problems with that .My Doc is not a CML specialist so insisted on 100 mg  but less is more with Dasatinib.I hope it works for you ,Good Luck .Denise.

Hi, Deni,

I started on 100mg dasatinib in 2009 after imatinib and my liver refused to play well together. From Thanksgiving Day to March of the next year I experienced such fatigue that I often just wanted to hide under my desk at work and hope the world would go away. I was determined not to fail my second drug so I perservered. In March the fatigue slowly lifted for me and dasatinib became my life saver. I did develop pleural effusions twice in the 11 years I took dasatinib. After the first my dose was reduced to 50mg and I did well until 6 years later I developed another which did not go away. My dose was reduced to 25mg every other day (to get rid of my 50mg tabs) and then to 20mg daily. I maintained CMR but finally had to make a switch to tasigna. 

Talk to your doc about trying 50mg. to see how you do, I bet you'll be fine. If not, you can slowly increase if you need to. The important thing is to take enough of the drug so it works for you and little enough so you can tolerate it. Good luck!

Pat x

P.S. Please tell me about the little "x" I on see after the signature on so many posts. I assume it means "hug" or "kisses". I use XOXO in the US for "kisses and hugs" on cards, etc.

 

Deni - I second all that has been said about the 100 mg.  You need to get that down as soon as you can - if you reach (have reached) MR3, you should definitely reduce.  I don't know why the "news" about dasatinib dosing is so slow to get to clinicians, but I believe I saw a paper given at this year's ASH recommending that the guidelines be changed to a STARTING dose of 50 mg for dasatinib.  It is just as effective as 100 mg (other different studies have shown this as well), but the side effects are (demonstrably, by a different study) lessened.  That includes fatigue.  This is not "news," but has been anecdotally tried and shared among CML patients for many years now, and there are definitely CML experts (like Drs Cortes and Druker) who endorse it.  Pleural effusion is an adverse event in about 30% of dasatinib patients, but again, there's been no study that I know of that has compared starting dosages with a first pleural effusion.  I would never have had the wit or courage to defy my onc if I hadn't had this (and the LLS) forums to even alert me to this.  I personally emailed and got responses from Drs Cortes and Druker advising me to go ahead.  I am on 20 mg dasatinib and have been for 4 or 5 years - my PCR took an immediate nosedive after I LESSENED the dosage, and has remained at the 0.006 level, with an occasional undetectable.  I had 4 pleural effusions on 70 mg and 50 mg dasatinib, but seem to be able to keep it to minimal residual fluid standard on 20 mg.  

Pat.... yes x means a kiss.

Sandy x