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?
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.
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?
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
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.
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.
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
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?
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?