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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 have had fatigue even before diagnosed but with a nap daily I was okay but this week I am more tired than before. I get up at 6 and after a couple of… read more

posted 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.

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… read more

posted 11 months 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?

A MyLeukemiaTeam Member said:

Did you have a Bmt?

posted about 1 year ago

Imbruvica Use

Imbruvica Use

I have been on Imbruvica for about 1 month now for CLL. When my WBC count hit 68 in mid March 2020, the doctor put me on it. 2 weeks after starting the drug my WBC count was 95. Today I had another blood test and it is up to 111. I spoke with the oncologist today and he said to not be alarmed and to expect a spike when starting the Imbruvica for the 1st month or 2 (it can double according to him), but after that it should drop dramatically. Has anyone else that is on Imbruvica noticed this initial… read more

A MyLeukemiaTeam Member said:

Yes my white blood 89,000 then spiked up all the way to over 300,000.. within one month and half....so dnt be alarmed ..then had to get immunotherapy… read more

posted about 1 month 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.

A MyLeukemiaTeam Member said:

Thank you Wesd, appreciate your response!

posted 11 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:

My donor was a 8 out of 10 match, a 40 year old May from Germany
My transplant was 6/1/2020
It has been a tough 6 months but am finally starting to feel… read more

posted 13 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… read more

A MyLeukemiaTeam Member said:

Actually you numbers seem low to me. I started it at 12,000 and was blessed to be in watch and wait for 6 year. WBC is the count of the bad cells,… read more

posted 15 days ago

Is A Swollen Lymph Node In Groin A Symptom That Should Necessitate Treatment?

Is A Swollen Lymph Node In Groin A Symptom That Should Necessitate Treatment?

A MyLeukemiaTeam Member said:

Husband had a very large lymph node in his groin and it bruised so much that by the end of the week the bruise was almost down to his knee before it… read more

posted 9 months ago

Imbruvica Treatment

Imbruvica Treatment

Hi! I have been on Imbruvica for CLL for 52 months. I wonder if there will be a time when it won't work. Does anyone have an experience where they have taken this for a long time?

A MyLeukemiaTeam Member said:

Thank you Richard for sharing. Prayers

posted 3 months ago

CLL Zap 70 +

CLL Zap 70 +

When I was diagnosed with CLL my “fish” panel showed I am Zap 70 positive.
My oncologist didn’t really say much about it. I’m on watch and wait with no symptoms other than wbc and lymphocytes are high.
Anyone else have this on their bloodwork?

A MyLeukemiaTeam Member said:

Will the neem leaf extract affect some meds? My husband is taking Lipitor, losartin, and metropolol. would a pharmacist know?

posted 9 months ago
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