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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:

Who else has sinus problems with imbruvica?

posted 7 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 5 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 9 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 5 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 initial… read more

A MyLeukemiaTeam Member said:

Yes. WC went from 49 to over 130 before it started to drop. It took 3 months to go down to 68.
Do labs again in 6 days so hoping to see another drop.
read more

posted 6 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 4 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:

I also have SLL/CLL. My CLL is very agressive but I have been doing so well on Imbruvica...I keep waiting for the other shoe to drop. I will pray for… read more

posted 5 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 4 months 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:

I had ALL. I got avascular necrosis in both hips and one shoulder. But that was due to the treatments and not the cancer itself.

posted 2 months 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 9 months ago
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