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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 was just diagnosed with stage 1 of CLL, I have a lot of fatigue. I agree with you. Why get treatment if no cure.

posted 5 days ago

What Advice Do You Have For Others About Managing Fatigue?

What Advice Do You Have For Others About Managing Fatigue?

A MyLeukemiaTeam Member said:

Do they contain caffeine? I have AFIB so even a cup of coffee makes my heart go crazy. What kind do you use?

posted 2 days 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 heard good things about venclexta

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 took it.and the booster. I did fine so far. No covid but I'm very careful.🙏

posted 3 months 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 had to stop taking them with Sprycel & Tasigna. I watched my coffee intake, no greasy foods,and absolutely no pop or chocolate. I'm on Imatnib now. I can take the generic pepsid.

posted 2 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 6 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 6 months 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 8 months ago

So I Have CLL My Doctor Says We Should Watch And Wait My WBC Is At 19 At What Point Should I Be Having Some Kind Of Treatment

So I Have CLL My Doctor Says We Should Watch And Wait My WBC Is At 19 At What Point Should I Be Having Some Kind Of Treatment

My CLL is in my marrow just wondering should I get a second opinion
Thanks
Victor

A MyLeukemiaTeam Member said:

I'm not a doctor and certainly not an oncologist but I did work in a medical lab for years doing hematology. The white cell count (WBC or leucocytes if you will) are the first indicators of things… read more

posted 1 day 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 11 months ago
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