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CLL Support Association
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Zero neutrophils.

Dad now seems to be needing blood transfusions every couple of weeks. Low red cells. Progression of his cll. In hospital today getting a transfusion, last Monday he had his immunoglobulin therapy. Hospital has phoned to say he is neutropenic, zero neutrophils, keep people away if they have an infection, and have given me a no. to phone if he gets an infection, immediate hospitalisation necessary. Just wonder how long this situation can continue..he's put up an amazing fight, but he's 92. Sad.

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It is sad but he sounds a fighter, you must be proud of him. Hope you both manage to enjoy Christmas

Marc

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Hope you can enjoy Christmas. Not easy.

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You can be reassured that your Dad's medical team haven't given up on him, given the infusions and transfusions they are giving him. Immunoglobulin therapy is very expensive.

Neutrophils take about 10 days to grow from scratch. That process can be forced by G-CSF injections. In your Dad's case, you mentioned he's had chemo recently, so he has likely at least 3 causes of his neutropenia; the CLL infiltration of his bone marrow, the chemo and the Ibrutinib. As the CLL in his bone marrow becomes cleared out by the chemo and Ibrutinib, his neutrophils should recover. Meanwhile he will need to be very careful to avoid any bacterial or fungal infections from skin breaks or abrasions and what he eats: healthunlocked.com/cllsuppo...

Your Dad can recover from this!

Neil

PS I've been neutropenic for 8 years - it's how my CLL was diagnosed. I haven't hit zero, but have been below 0.3. Normal range is 1.8 to 7.5 or thereabouts.

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I agree, my dad is very lucky, he's been getting immunoglobulin therapy for more than a year. My worry is he's not had any other treatment, the Ibrutinib was over a year ago, had to come off it, pneumonia and zero neutrophils then, so hospital saying the neutropenia is caused by his cll. Also the need for transfusions is recent, just seems to be on a downward spiral. I realise he's done well, and had as much treatment as he can cope with, he's had pneumonia 4 times, and an infection last month, he's so frail now, his spirit is still strong, but physically he's struggling.

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Sending immense best wishes to you and your dad for this festive season and I really hope he can dodge any and all seasonal bugs until his neuts recover. We all understand your concerns for him but it sounds like he has a tremendous amount of fight in him. It's clear you're there with him every step of the way through this and that's tough on you too.

Hope you both have the best and safest Christmas and that he shows some signs of improvement in the New Year.

Newdawn

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Praying for your Dad and the family as you fight this with him.

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Thank you so much. Can't stop thinking about him. But he's done so well, twelve years since diagnosis, he was 80. To get to 92 is pretty good!

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you and your dad have done and are doing wonders! it's no wonder you feel low sometimes with challenges that don't seem to quit. as a caregiver, i am reminding you to truly take care of yourself too - "you can't pour from an empty cup", you know.

sending best wishes to you both, for the holidays and the new year!

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You have my sympathy and prayers. My father is 96 and we have been fighting advanced prostate cancer. He is frail and blind but still wants to fight. My goal is palliative care. He is in and out of the hospital and sub acute care. Mentally it is a series of losing battles. I have to force my self to remain positive. As long as my father is comfortable and willing to fight we carry on. I come back to Dylan Thomas' poem Do Not Go Gentle into That Good Night.

“Do not go gentle into that good night,

Old age should burn and rave at close of day;

Rage, rage against the dying of the light.

Though wise men at their end know dark is right,

Because their words had forked no lightning they

Do not go gentle into that good night.”

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Thank you! It is as you say, a series of losing battles, but he fights on! Amazing strength of spirit.

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