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Hello, my mother also had CLL so I might have a gen-deletion that plays a role but in the Netherlands this is not tested while a CLL patiënt is on
wait&see. Some patiënts remain in a wait&see and never need treatments. Some even get a spontanious lower leukocythes level without treatments. From this specific group we never know the common factors and if there was a gen-deletion (and more interesting: wich one?)
I wonder why this is not researched in my country.
By Reading the internet I only… read more
Yes I have the 13 deletion too I think the one to be careful about is the 17 deletion.
My del13q14 result was determined at diagnosis. Three years later I elected to start treatment with Calquence. I had rough 3 month start(infections) but now am doing fine with WBC in the normal range.
There are several markers (gen deletions) for CLL. Some have a better prognosis than others. When I was tested, I found I have one abnormality, q 13 del. This one happens to have a favorable prognosis. I'm a lucky kid!
Yes I had this done the same time I had my flow cytometry test. I knew my deletions when I went into my first visit with hema/onc.
Hi Heleen.
I have CLL/SLL. When I went to the hospital on January 26,2018 my hemoglobin was 48. I was getting blood every other day until I saw my hematologist in March.
I was diagnosed March 29th with stage 3 CLL/SLL.
We discussed treatment options including chemotherapy. Before we started my treatment, she put me on a very high dose of prednisone and sent my blood for the test you mentioned.
The test took 7 weeks to complete.
When she received the results, she decided that the best treatment for me was 420 mg. of Imbruvica daily.
I have been in treatment 67 months now and living a fairly normal life at 75yrs old.😊
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