Newly diagnosed

Hi David and welcome.
It might be that you will tolerate dasatinib without too many side effects. However you are only on day 3 so this may well change as time goes on. There are many on this forum who are treated with dasatinib so will be able to advise in more detail.

Meanwhile please let us know if you have any further questions or need further advice as you go on with your treatment.
Sandy

I thought the same way .... after a few days, no big deal, no side effects. And then the headaches, aches in joints and muscles and the mouth sores .... wow.
It can take a few months to set in.

You can minimize their impact on you by doing a few things now. Dasatinib suppresses the immune system somewhat. This enables opportunistic bacteria to get a foothold in places like your mouth (mouth sores). Have a mouthwash handy for that purpose. Dasatinib can also cause magnesium depletion (Lindner S, Bassermann F, Bader P, et al. Hypomagnesaemia caused by tyrosine kinase inhibitors. Lancet Oncol. 2011;12(2):155-156. doi: 10.1016/S1470-2045(10)70292-9.). Magnesium depletion will lead to muscle aches (especially at night) most noticeable in the legs. You can avoid this by supplementing with magnesium now (citrate or taurate forms). I take 400 mg per day split in two doses, morning and night. I no longer take dasatinib, but I still take magnesium!

Let us know your CML trend line. You should have your blood (CBC) tested weekly to verify you are not experiencing myelosuppression. Your doctor should know this (i.e. test weekly with new dasatinib prescriptions). This will establish your baseline. In my case, I was started on70 mg dasatnib and in days, my blood counts plummeted to very low levels and I had to stop treatment after 5 days. It's somewhat rare this happens (my luck), but it can happen. You want to verify it is not happening to you. If it does, a much lower dose of dasatinib is recommended.

Keep us informed on your journey. Over 95% of CML patients who are "caught" in chronic phase outlast the disease (i.e. you die of something else).

A transplant is a last resort when all else fails. By 2014, the need for bone marrow transplant to treat CML dropped to less than 6%. Today it is less than 1%.
You will never need a transplant, I will wager on that.

You are in the very early stages of treatment. Dasatinib is likely to work for you, but the 100mg dose your doctor prescribed is at the high end. You may not need that dose and you should be prepared to lower your dose for an even better CML response. More drug does not equal better response when it comes to dasatinib.

My doctor never prescribed 100 mg for me. And I ended up on 20 mg per day which cratered my CML (but I also added other nutrients to help it along).

It's good you are having a blood test after only a few days. That is the correct step to take so you can see how you are responding. If your neutrophils are dropping too low you may need a much lower dose and or dose interruption to get adjusted.

(Right now you have a leukemic blood system. Dasatinib is killing off the leukemic cells creating a "hole" in your white cell count as your normal blood system works to replace the missing cells. This transition from leukemic to normal takes months and is the key phase in CML treatment. As your body transitions, you will feel better)

Hi David - in a similar situation, I am 31 and turning 32 in a week. Lack of data for our age group is scary but we're probably stronger in numbers than is published. Stay strong and stay in touch! - O