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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?

edited, originally posted over 3 years ago
A MyLeukemiaTeam Member said:

Yes I have lymph nodes that I notice from time to time. I never connected it to colds etc. but will be more aware when they become enlarged.

posted 6 days ago

What Advice Do You Have For Others About Managing Fatigue?

What Advice Do You Have For Others About Managing Fatigue?

posted 5 months ago
A MyLeukemiaTeam Member said:

I also use the marijuana tincture. I can usually sleep well for about 6 hours. I only wish it did not take two hours to take effect

posted 3 days ago

Acronyms

Acronyms

Hi Every one, just got back from my morning jog, did some exercises in my back garden, then out of the blue I fell to my knees on the lawn and couldn't breath but no pain!!. As I was near my shed I just punched the wall as hard as I could and my breathing returned. Bit odd as I don't usually have any problems with breathing, how ever that isn't to do with my question. (smile) My question is that we all on the site use acronyms for various medical conditions ye! t I don't know what they are… read more

posted 3 months ago
A MyLeukemiaTeam Member said:

Mike, your right and I used to use Tiger-Balm in the Jungle in Borneo, great stuff. keep safe

posted about 2 months ago

Gleevec

Gleevec

How long do you need to take Gleevec. I have been taking it for twenty years. Have been in remission for at least 18 years. Still in remission.

posted about 3 years ago
A MyLeukemiaTeam Member said:

As I understand it for the rest of your life. I saw my oncologist this week and we decided that my best option would be to try Gleevec again because the Tasigna stopped working, Sprycel and Bostifnib… read more

posted over 2 years ago

What Are Your Top Tips For Managing Leukemia In The Summer Heat?

What Are Your Top Tips For Managing Leukemia In The Summer Heat?

posted 3 months ago
A MyLeukemiaTeam Member said:

I found that I suffer some excruciating leg cramps during nighttime sleep after having sweated profusely doing yard work during the day. After a little research, I found a product, Laird's Superfood -… read more

posted 16 days 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

posted about 2 years ago
A MyLeukemiaTeam Member said:

😉

posted about 1 year ago

I Have CLL. What Exactly Am I Watching And Waiting For?

I Have CLL. What Exactly Am I Watching And Waiting For?

Am I waiting for the pain to reach a threshold? The numbers? The size of my lymph nodes? I am not getting a straight answer from my doctors.

posted about 2 years ago
A MyLeukemiaTeam Member said:

I have CLL, watch & wait since 2009. Had chemo in 2016. Have continued IVIG infusions, before & after chemo, every 4 weeks
My biggest problem now is complete exhaustion all the time. I still have… read more

posted 3 months ago

I Have Not Seen Information About Mutated Vs Unmutated CLL. I Am Unmutated. Has Anyone Else Dealt With This?

I Have Not Seen Information About Mutated Vs Unmutated CLL. I Am Unmutated. Has Anyone Else Dealt With This?

My doctor has told me that due to being Unmutated I should be made more aware of the increased chances of tumors on lungs, spleen as well. Mixed bag of autoimmune diseases here as well.

posted over 2 years ago
A MyLeukemiaTeam Member said:

Thank you Wesd, appreciate your response!

posted over 2 years ago

Anyone Dealing With CML Accelerated Phase?

Anyone Dealing With CML Accelerated Phase?

I was diagnosed with CML Accelerated phase in April 2019. Several additional mutations as well. Been on Sprycel and in total molecular remission now. Some doctors advising transplant and others say it's reasonable to watch and wait. Anybody been in this situation?

posted almost 3 years ago
A MyLeukemiaTeam Member said:

Did you have a Bmt?

posted almost 3 years 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.

posted almost 2 years ago
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 12 months ago
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