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Newly Diagnosed CML patient PH+

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Hi all,

I am Ammar from india and i would like to appreciate your efforts and time you spend on this page for knowledge and conform of newly diagnosed patient,I am been member of this community for last 6 months since i was diagnosed with CML PH+ chronic phase.

When i was diagnosed it was by complete surprise for me, and I really found myself comfortable reading all the questions and queries discussed in forum.

Its been almost 6 month i have been diagnosed and i am under treatment of dasatinib 100 mg a day, however after 1 month of treatment i was feeling better but with passing days i feel it very difficult especially the fatigue and continuous fever felling cold and thorat infections and fullness in my stomach i tried to bring this with my hematologist however he said this may be viral every time same answer. Now i am worried as the frequency is increasing and almost all day i feel i have fever with bones pain and fatigue though the temperature is not much high when i check in thermometer, I would like to seek your advice from your past experiences and knowledge is this part of the CML treatment or do i need to be cautious and look for change in doctor.

Currently my last WBC was 9000 and my RT PCR BCR ABL level was 0.0957 in 6 months of treatment with dasatinib 100mg a day

Appreciate your feedbacks and information.

Thanks regards

Ammar

It is good that your BCR/ABL is at a low level. You may not need 100mg and it very well could be a side effect of the medication. It could however, be something totally unrelated. I think going to a regular doctor as if you had no CML for a second opinion to see what is going on would be helpful. I have found at times that my oncologist doesn't look at other concerns beyond my blood labs. Thankfully he has always been correct in that it was not related to CML. A general practitioner can probably refer you to a specialist based on your symptoms without blinders on.

Hi brother,

Thanks for your time, Yes I usually visited general physician and as per them due to the medicine and current medical conditions my immunity is weak due to which i am having frequent infections is it possible? and i needed extra precautions. I also feel 100mg is too high given current BCR/ABL level but as my treatment started just 6 months back he is not lowering the dosage.Thanks hearing back from you means a lot
Thanks!

Ammar, my first 6 months on dasatinib were horrid! Vomiting the first night and then tremors. I had tremors every evening for at least 6 weeks, they did eventually go away. Then the fatigue...I had never experienced fatigue like that before, I thought I was ill. It wasn't until a couple of years later and reading what other people said that I realized what I had been suffering from. I was lucky, the fatigue resolved after 3 months as quickly as it came. I would occasionally have bone pain in my thighs, I developed sinus infections, heat intolerance in the summer, freezing in the winter, the list seemed to go on and on. But, this all seemed to disappear within the first year.

However, dasatinib worked so well for me! After 2.5 years I developed a pleural effusion. When it resolved I was put on 50mg/day and did great for another 6+ years. Unfortunately, I developed an effusion that would not resolve. The doctors, knowing how well dasatinib worked for me, tried to keep me on it by lowering my dose to 20mg daily, then to 25mg. every other day. Dasatinib continued to work well for me but I could not get the effusion to resolve.

It truly was with great sadness that I switched to nilotinib. How weird does that sound? :)

You haven't been on dasatinib for long, it is working and perhaps your doctors would be willing to lower your dose at some point in the near future.

This is just my experience, but sticking with dasatinib worked for me for over 11 years. Good luck!

Hi hanni,

Thanks for sharing experience it means a lot, there are number of unexplained questions with every passing day but this kind of support really helps in forward and keeping faith that tommrow will be better than today

Thanks

Ammar, a PCR reading of 1.0, or less, means that the CML presents no danger to your health. With your last PCR reading of 0.0957, after only six months of treatment, you are in a position to reduce your Dasatinib 100mg TKI dosage which should lessen the side-effects you are experiencing. Talk to your doctor; you are your own best advocate in this matter. Not all oncologists/hematologists believe in dosage reduction. If yours doesn't find one that does. When are you scheduled to test again?

Buzz.