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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

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 Tasigna stopped working, Sprycel and Bostifnib… read more

posted about 2 years 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

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 about 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?

A MyLeukemiaTeam Member said:

Did you have a Bmt?

posted over 2 years 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

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

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… 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 treatments with rituxan once a week before it… read more

posted over 1 year ago

Has Anyone Had Any Bone Issues With CML, ALL, AML, CLL?

Has Anyone Had Any Bone Issues With CML, ALL, AML, CLL?

I ask because I had an MRI recently for my shoulder. I've got some tears in my rotator cuff muscles which was the basic reason for the MRI but they noted some lesions in the humerus. Given my history they said it was possibly leukemic infiltration or bone infarction. Not sure if that is a serious problem or not. I gather it could be part of degenerative bone disease and age related. Just curious as to whether anyone else has had this.

A MyLeukemiaTeam Member said:

My 86 yr old Aunt with AML
Diagnosed 1 yr ago has been on Chemo IV Txs for 1 yr
Now she’s been diagnosed with a fractured vertebrae and spine doctor wants to do a Kyroplasty.
Does anyone know… read more

posted 4 days ago

Does Anyone Know Of Natural Methods Like Herbs, Etc.to Use While On Wait And Watch?

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.

A MyLeukemiaTeam Member said:

(Email address can only be seen by the question and answer creators)
Thank you

posted over 2 years ago
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