Does anyone have chronic myeloid leukemia (CML)?

Posted by ilahiRameez @ilahi, Oct 25, 2023

Hi I am Rameez, 28 years old. I was diagnosed with chronic myeloid leukemia about 14 months ago. I take dasatinib tablets for the treatment. Almost an year went alright, lately I am feeling continues problems physically and emotionally. I am planning to take another opinion again. I would like to hear from someone who has the same condition and to know what medications or treatment they have done!?

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I had my bone marrow aspiration and bone biopsy yesterday, no sedation, just lidocaine to numb my skin. I was really dreading it, but the procedure was not nearly as bad as I imagined. The doctor who did it was amazing. So, should I need to have another one in the future, I won't stress about it. I have another appointment with my oncologist tomorrow. I'm hoping he will have some results of the biopsy to share with me.
Since I'm still very tender at the biopsy site, the back side of my pelvic bone, I plan to do as little as possible today and just take it easy.
To some of you facing a bone marrow aspiration and bone biopsy with only local anesthesia, I can tell you in my case it was not really painful at all, but I think I have a fairly high tolerance for pain, so your experience may not be like mine. I hope it is.

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I’ll be taking a TKI soon and am curious what Tasigna or Sprycel will cost per month. Tasigna has no generic as I understand it and is in Tier 5 on my drug formulary. I have a Medicare Advantage plan through United Healthcare. I’ll be joining a clinical trial soon but have started to stress whether I’ll be able to afford the drug after the trial ends.

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Hi can you pls suggest what were your wbc at diagnosis?

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@phulwanik0611

Hi can you pls suggest what were your wbc at diagnosis?

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11.34. I don’t recall WBC being the issue. For me it was very high platelets, up as high as 2034.

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@ortina2023

11.34. I don’t recall WBC being the issue. For me it was very high platelets, up as high as 2034.

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Thanks for the reply...i have been having borderline high wbc since last 1.5 years ..it keeps fluctuating but i was worried. .
Peripheral blood smear report came normal...my haematologist suggest it looks benign but i am super anxious anyway

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@suzie71

I do not have any issues anymore. I was diagnosed in 1998 with CML and after 18 years of taking Gleevec I had to stop due to bad edema throughout my body and eyes. I was undetectable since 2002, but stayed on my Gleevec. I am now almost 6 years of Treatment Free Remission this coming Feb. I just get monitored every 6 months to be sure I am still PCRU. The Invention of these TKI drugs has saved many a life. Anyone can e-mail me at anytime if they need some support of any kind.

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Dear @suzie71
hope you are doing well
can you tell me how they said to you that u have CML , what a reason , we made blood film and
cbc only said netropenia whithout any thing else ,due to low neutrophil and high lymphocytes?

Regards

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@sonia85

Dear @suzie71
hope you are doing well
can you tell me how they said to you that u have CML , what a reason , we made blood film and
cbc only said netropenia whithout any thing else ,due to low neutrophil and high lymphocytes?

Regards

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I had a blood test with a high WBC, and they repeated it two more times. Everytime they did it it got highter. Doctor said the only way to find out what was going on was to have a Bone Marrow Biopsy. The results were CML They look at the whole break down of your blood results, and other tests are done also to verify diagnosis.

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@suzie71

I had a blood test with a high WBC, and they repeated it two more times. Everytime they did it it got highter. Doctor said the only way to find out what was going on was to have a Bone Marrow Biopsy. The results were CML They look at the whole break down of your blood results, and other tests are done also to verify diagnosis.

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Dear @suzie71
Hope you are doing well now
Hmm i got sorry for remind you those moment😓
What about your netrophil and lymphocytes in your blood test! High as well?

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You can ask me anything at anytime. I do not remember what my other numbers were, as it was such a long time ago. Were you diagnosed with CML? Maybe I missed something. Are you still waiting for a diagnosis of why your blood is not in normal range.

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@suzie71

You can ask me anything at anytime. I do not remember what my other numbers were, as it was such a long time ago. Were you diagnosed with CML? Maybe I missed something. Are you still waiting for a diagnosis of why your blood is not in normal range.

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Dear @suzie71
Hello dear
Actually my husband made blood test before 25 days there was some abnormal things
Wbc ok
But lymphocytic high
And netrophil very low
So they made another test
The Lym was in range
But the lym % was high
As well neu 0.6
So they checked his liver it was ok
But now maybe we should make bone marrow test
So am very weirded about everything because no. Thing clear😓😓😓
Some doctors says that maybe only infection so am very fear
He is 37 year

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