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CLL - newly diagnosed

Blood Cancers & Disorders | Last Active: 2 days ago | Replies (108)

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@fortunateoldman

Yes, I certainly had many of the common CLL/SLL signs and symptoms. Intense fatigue and tiredness, frequent night sweats, swollen glands, painful spleen (although not enlarged), itching that wouldn’t go away when scratched, unexplained bruising, shortness of breath and off-the-chart WBC and lymphocyte count along with a shrinking platelet and RBC count.

One of my sisters also has CLL (possibly SLL but she refuses to get her lymph nodes biopsied) and I lost an older sister to aggressive acute lymphoblastic lymphoma. I take quiet issue when doctors say leukemia or lymphoma isn’t hereditary.

Like most oncologists, mine followed published guidelines and recommended the watch and wait approach with follow-up visits and lab work every 3-months. I also received a CT scan, lymph node biopsy, bone marrow biopsy, flow cytometry and a FISH CLL panel. Finally, after close to a year of watch and wait he felt treatment was a worthwhile next step.

The wait was most definitely worth it so far. All the above symptoms diminished or totally disappeared in the first 10-14 days. The Gazyva treatment dropped my WBC and lymphocytes counts from extremely elevated to slightly below normal within 36 hours after the second infusion. It worked so fast that I received repeat bloodwork very often to monitor for tumor lysis. I only had infusion reactions on infusion days 1 and 2 and was fine after that.

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Replies to "Yes, I certainly had many of the common CLL/SLL signs and symptoms. Intense fatigue and tiredness,..."

Hey ! That is awesome ! I can understand why your sister refuses! It could change things and we aren't ready for that ! I was the same
Way when I got my mammogram and my axillary nodes were enlarged and I told them what it was from but they were like hmm no, so I put the biopsy off for a month or so. And it turned out to be SLL. Now back to watch and worry with an appt tomorrow 😔. So I had CLL, now SLL