CLL Support Association
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CLL and starting initial treatment

Diagnosed with CLL about 3 months ago, platelet count decreased to 76000 and hemoglobin 5.7 and was suggested to start treatment. Does this data alone indicate treatment should be started?

The patient doesn't have any of the other symptoms such as unexplained fever >38°C x 2 weeks with no infection, Unexplained weight loss >10% over 6 months, Drenching night sweats >1 month with no infection and severe fatigue.

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Hi low haemoglobin and platlets are indicators for treatment. I had this with no other symptoms and felt well. I have just started FLAIR trial on Ibrutinib and Rituximab arm 6 days in. Hope this helps you.

Good luck

Ann

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Hi there. I was diagnosed Apr. 2016 by Nov. my hemoglobin went down to 7.8. Had 2 pts of blood. Bone marrow biopsy. Treatment Dec. Just make sure you see a cll specialist.

Cindi

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I had no B symptoms just a trend of falling HB below 10 which triggered my start of treatment. I thought I was well but now after FCR I realise I was living in a fog and over the years adapted to my fatigue to manage and live life normally.

Do not be frightened of treatment.

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I am not a medical person, but think that something needs to be done right away about the falling HGB. 5.7 and falling is dangerously low. The person should have a FISH test before which treatment is decided on, as it can indicate which ones are likely to give a long remission, though the doctor will possibly want to start with transfusions right away.

If you are in the U.K. people here can help you with how the system there works and where the specialists are. You will get more complete answers if you restrict your post to community only - click on the v next to more, then edit, then scroll down to community only.

Please let us know how the patient is doing!

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