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New parent with a daughter diagnosed with CML

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Hi All,

My daughter 24 was diagnosed with CML last 2 weeks ago not sick just went for a blood test for women problems.  She is in Australia and is an Australian.  We are still waiting on the Prescription for the nilotnib to come through.  I have been reading a lot as you can imagine about the side effect.  Are they as bad as I read on line?  I live in Hong kong with my husband and other daughter.  We are looking into into treatment in Hong Kong does any body have any contact or information about cases or groups their.

thanks all  it has been a total shock to all of us flying by the seat of our pants at the moment trying to catch up.

Charron

 

Dear Charron,
I hope all the best for your daughter!I know this feeling but trust me everything will get better!I am 31 years old diagnosed 9 months ago with CML. I started with nilotinib 600mg on a daily basis and had an immediate response to therapy.I hope the same for your daughter too!Personally the only side effect that I experienced was itchiness in my body the first two months and hair/eyebrow loss.
I will be happy to help if you have any other questions.
Vicky

Thank you will keep you posted

 

Hi Charron,

It’s really important to remember that patients who are doing really well, and suffer no / little side effects (and there are a lot of them!) don’t tend to post to online forums saying how good they are feeling - they just get on with their life.

Reading forums, such as this one, could freak you out more than is necessary because people who need help with CML are a self-selecting group. With luck, your daughter will have a great response and be one of those people who don’t have many problems. But if she does, we have massive experience here so there’ll always be help to turn to.

For young women, fertility (if that’s something on their radar) is a complex problem with CML and it’s the the fault of the meds we take not the disease. It’s not impossible, absolutely far from it, but it takes a bit more planning than would be ideal.

David.