85 year old not coping with nor responding to treatment

[TKB2020]

Hi, I am new. My Dad has CLL which has just become symptomatic after 5 years. He has had 3 treatments of Obinutuzimab and Chlorambucil , the first one made him so ill he was rushed to ICU. Now he seems to have hemalosis, as his RBC is very low at 70 and will not increase even after 8 blood transfusions this week! We are so worried. Anyone in a similar position?

[Jacksc06]

Hi Welcome to the family. I am not in a position to give advice regarding your fathers plight but i am sure some of the more learned on this forum will be able to advise. Wishing you and your father well.

[TKB2020 in reply to Jacksc06]

Thank you!

[JigFettler Volunteer]

Hi and Welcome!

Very worrying - I do understand.

You give only a few details, and much of what is happening to you Dad at 85 may have a bearing on other medical conditions and medication that he may have or be on.

Which country are you from? The response may vary.

Do you have a good relationship with the Haematologist?

Haemolysis needing 8 transfusions is a lot, Hb 70 is low, and not the normal experience of the CLL journey, although not unheard of.

This is complex real time CLL medicine - and I would hope the Medical Advisors would discuss in full what is happening.

Others here may have personal experience in deed.

Best wishes to you

Jig (UK)

[lankisterguy Volunteer]

Hi TKB2020-

As JigFettler says, we would like to help, but our suggestions can be far more valuable and actionable if we know what country and health system is involved with your Dad. And we cannot give medical advice and should not dispute what the medical professionals are doing since they have far more training and knowledge of your Dad's condition and medical history than we do.

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The choice of Chlorambucil would be strange in many of our countries, and depending on the health system / insurance involved we would suggest getting a 2nd opinion from a CLL expert doctor on an urgent basis to suggest a better - more modern treatment that may be less harsh and more effective.

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If you and your dad are in the USA we would recommend this:

cllsociety.org/cll-society-...

or this: cllsociety.org/toolbox/cll-...

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Len