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sofaramnotdead (@sofaramnotdead)

Chronic Lymphocytic Leukemia

Blood Cancers & Disorders | Last Active: Jul 30 8:22pm | Replies (34)

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@ssid

Hello
As of January 29 my hemoglobin and platelets are below the normal low, I went for a second opinion with a CLL specialist at Froedtert in Milwaukee. If my numbers continue to lower he said I will need to start treatment….FCR for 6 months or Ibrutinib 3x a day forever. Does anyone have any thoughts, pros or cons of the two treatments?

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Replies to "Hello As of January 29 my hemoglobin and platelets are below the normal low, I went..."

@ssid, you mentioned quite some time ago that you were going to begin treatment for your CLL. If you are comfortable sharing, how are you doing with your FCR and Ibrutinib treatments? How are you feeling?

I am still wait n watch…my treatment will be Ibrutinib since I am 17p deletion. My numbers are slowly decreasing with a rising WBC of 60,000. I have two large lymph nodes on my left jawline, which are not painful, that I am always trying to hide. My oncologist said the decision is mine as to when I want to start…

Well, I started taking Imbruvica, 420 mg, on July 6th, 2018. Only two days where I felt nauseous with a headache. My wbc # peaked at 100,000 and 78,000 as of last week. My hemoglobin and platelets are also low which they are monitoring this week….blood draw in two hours. Hopefully the numbers will come up on their own. If not I will take a lower dose or stop for awhile…
The anxiety I have with all of this is crazy at times.

@ssid, thank you for updating us. You had mentioned that you were previously on wait and watch protocol, but your numbers must have changed. I think anxiety with these treatments and diagnosis is understandable. How did your blood draw go?

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