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Leukemia

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Real members of MyLeukemiaTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.
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Has Anyone Experienced Extreme Fatigue Before Getting Treatment For CLL?

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?

A MyLeukemiaTeam Member said:

I did. I still have severe fatigue after my diagnosis.

posted about 2 months ago

Is There Anyone Who Was Diagnosed With CLL While In Their 40’s?

Is There Anyone Who Was Diagnosed With CLL While In Their 40’s?

I was diagnosed with CLL at the age of 41. My hematologist says 1 in 6 million have CLL at my age. I’ve not met another in my age group with CLL and just curious.

A MyLeukemiaTeam Member said:

I have 3 brothers. I and my two older brothers are all in our 80's. We all have been diagnosed with CLL or SLL
A strange thing!! I was the first diagnosed, my oldest brother next, then my next… read more

posted 3 months ago

Covid Vaccine

Covid Vaccine

I have cll and am thinking about taking the covid vaccine but I'm concerned about it because it hasn't been tested on people with lukeima. Should I still take it?

A MyLeukemiaTeam Member said:

I got the moderna shots in Feb 2021,and no side effects. And 🙂 I'll get the booster one when it become available,and I had my flu shot August 2021. To me better safe then sorry. I did ask my… read more

posted 3 months ago

Sprycel

Sprycel

I would like to know if anyone with CML has had trouble with their eyes. I am on sprycel. Before I was n gleevac.

A MyLeukemiaTeam Member said:

Yes three months after my annual eye exam, which was fine with no change in prescription that I’ve had for 15 years, I noticed blurring. Made An appt for fundoscopy. It’s showed after 3 months on Spryread more

posted 15 days ago

Acid Reflux

Acid Reflux

Anyone experience acid reflux while taking leukemia meds? Dr said I cannot take any of the meds available to treat it because they decrease the acid needed to absorb the leukemia drug. anyone have any treatment that helps?

A MyLeukemiaTeam Member said:

I have terrible GERD. Take 40mg of Pepsid daily must take 2 hours before chemo

posted 10 months ago

Covid Vaccinations

Covid Vaccinations

Hi My Leukemia family. Has anyone on our team had a covid vaccine yet? I haven't got the nerve up to take it yet. I'm to afraid of the side effects. I'm afraid it would interfere with my treatment. It's been 13 years since my CML diagnosis. I've been doing very well so far. Stay Safe 😷 Everyone please stay safe 🙌

A MyLeukemiaTeam Member said:

Had 3 Moderna shots....all is well

posted 9 days ago

Donor Cells

Donor Cells

I am interested to learn from those who have had a stem cell transplant for AML or any leukemia for that matter. I would like to ask what you percent of donor cells did you have after transplant? How long since your transplant. Anyone who transplant has not cured? Thanks for any information.

A MyLeukemiaTeam Member said:

Or should I just be grateful to make it through the SCT - which was the hardest thing I have ever done. Did not think I was going to make it.

posted 2 months ago

I Don't Understand What The Numbers Mean

I Don't Understand What The Numbers Mean

Hello all and thank you for allowing me to join this group! I was diagnosed with CLL one year ago after my PCP noticed that my while cell count was a little high after being treated for a bad infection in my finger. She watched my bw for 3 months before sending me to a Hematologist, who gave me the diagnosis. This doctor told me that I don't need any treatment and I see her every 3 months for bw and a physical exam, checking my lymph nodes. My white cell count has gone from 11 up to 27 in a… read more

A MyLeukemiaTeam Member said:

😉

posted 5 months ago

Breathing

Breathing

Does anyone have difficulty with shortness of breath

A MyLeukemiaTeam Member said:

Mine now seems to come and go. Not sure why.

posted 5 months ago

WBC

WBC

I was diagnosed with CLL several years ago. I have regular appointments with my oncologist. I have been in the "wait and see" stage since diagnosis. My most recent visit, which was after a year, my WBC went from 23.4 to 56.6. My Absolute Lymphocyte Count was 44.75 K/uL. My oncologist mentioned maybe starting treatment but was not definite. My next appointment will be in 3 months. My question is how high does the WBC get before aggressive treatment is started.

A MyLeukemiaTeam Member said:

Sometimes the reason for starting treatment isn’t always your WBC. Mine was the size of my nodes

posted 9 months ago
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