Has anyone been treated with Midostaurin as an inhibitor during remission of AML?

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A MyLeukemiaTeam Member said:

thanks. I am not on any meds either but my Dr. wanted me to go on this to inhibit the genetic problems i show

posted 2 days ago  

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What caused a DNA change

I was just diagnosed with CLL in May. I still don’t understand what caused a DNA change. I have read and read but how does this just happen. Why can’t they just replace my chromosome 13 with one of my normal
Cells before they all turn to this defective cells

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A MyLeukemiaTeam Member said:

My bro died of Aml 2001 I also when. To see if it was hereditary. Said no. Really?

posted 8 days ago  

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Does anyone know of natural methods like herbs, etc.to use while on wait and watch?

I want to build my immune system but many suggested protocols only increase white blood cells. Are there any other kinds of immune boosters?I was diagnosed 8 months ago.
Thank you.

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A MyLeukemiaTeam Member said:

Mimosa bark

posted 15 days ago  

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Need any kind of information

For over a year and a half now I've been dealing with this same thought that plays on repeat. "What I don't know won't hurt me". Reality is I just want to grab a shovel and I'll gladly dig my own hole in the ground. It's been now almost 2yrs that my neck started swelling. Huge lumps protruding out the sides. (Obviously lymph nodes) my armpits,breast and groin area are swollen also. Labs have been abnormal for over a year. My weight will go from 120lbs to literally 104lbs in less than… read more

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A MyLeukemiaTeam Member said:

Right now my husband is on respirator since June 17, the Dr. said is through the AML that he cannot breath. Any idea how bad it is anyone. I’m really… read more

posted 20 days ago  

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Second day on Bosutinib? How much worse are side effects compared to Sprycel and Gleevec?

A MyLeukemiaTeam Member said:

I had enlarged node in my neck with a normal CBC and chest X-ray for over a year.I went back to s
The surgeon who had dismissed it as nothing and… read more

posted 6 days ago  

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Has anyone else been diagnosed with Chronic Neutrophilic Leukemia (CNL)?

They’ve also talked about a possible bone marrow transplant.

What's the difference between ibrutinib and imbruvica

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A MyLeukemiaTeam Member said:

Thank you! Hugs back to you!

posted about 2 months ago  

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Sprycel

Is there a possibility that Sprycel affects the middle ear and cause vertigo?

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A MyLeukemiaTeam Member said:

I was in trials for it and yes I had vertigo and dizziness and inner ear fluid.

posted 2 days ago  

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Has anyone experienced extreme fatigue before getting treatment for CLL?

I am in watch and wait mode for CLL after being diagnosed a couple of years ago. Pain and fatigue are what originally sent me to the doctor before diagnosis. Has anyone else experienced worsening pain and extreme fatigue before treatment?

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A MyLeukemiaTeam Member said:

Same here

posted 6 days ago  

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Has anyone had a lumbar injection to get chemo to brain and spine?

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A MyLeukemiaTeam Member said:

Yes, I highly recommend you request to do it with a radiologist under an x-ray machine. I was stuck multiple times by the team, they called in the "A"… read more

posted about 2 months ago  

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