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.
I was diagnosed about a year ago with stage 1 CLL. I was also put into that "cautiously wait and watch" period for the first 6 months...but my fatigue and anemia grew so quickly, that I am now at a stage 3 diagnosis. Actually, my blood work says stage 2...but with the extreme anemia, that puts me over the edge into stage 3. My only real advice to you would to make sure you have a really good Oncologist...who you are comfortable with! Have frequent blood draws to monitor what is going on!!
CLL is typically a very slow moving form of leukemia, and many people never have any real symptoms.
Best of luck to you my friend!!!
I also am on the w/w phase
Per my doc, they are looking for a high wbc, anemia, or swollen lymph nodes prior to any treatment
The wbc and anemia is taken from regular blood work
Hope this helps
I think I have finally gotten some thing that approximates a satisfactory answer about watch and wait. it seems as good as they want to tout the treatments to be, they still aren’t perfect. They would rather wait as long as possible before introducing medications that the beast will eventually adapt to and overcome. Does that square with what anybody else is hearing?
I'm with Tom have a really good Oncologist that you are comfortable with and I would also suggest push for specific answers, because you have the right to know what to expect and your doctor should be upfront with you with that information. Good luck and god bless.
Therein is where my confusion lies. What constitutes swollen lymph glands? Swollen glands was how I knew something was wrong almost a year ago, And they said I was at stage zero. My doctor said something about the white blood count Doubling, but I have Heard of people with 10 times my WBC who are still in watch and wait.
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