Posts - CLL Support | HealthUnlocked

CLL Support

22,532 members • 38,709 posts

All posts for May 2017

My dads cll

Thanks to everyone on here for all your support just an update: my dad has CLL but it got worse he had to have a blood transfusion. Well his treatment started...

Thanks to everyone on here for all your support just an update: my dad has CLL b...

•7 years ago

Skin issues with CLL and Ibrutinib

I have been on Ibrutinib for over a year. Dosage was reduced because of some side effects, I get petechiae on my arm and under one eye. Has anyone found a...

I have been on Ibrutinib for over a year. Dosage was reduced because of some si...

•7 years ago

Alert - tick borne disease (Powassan virus) found in infected ticks

Coming to an area near you? Forwarded to me from a friend - Note: 1st article reports Powassan virus can be passed on to you in 15 minutes after the tick...

Coming to an area near you? Forwarded to me from a friend - Note: 1st article re...

•7 years ago

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Health Insurance NZ Advice please

We have just moved from Australia to NZ for work. We have private health cover in Australia same company for 22 years. Our Australian health cover provider...

We have just moved from Australia to NZ for work. We have private health cover ...

•7 years ago

Ibrutinib week 1 - gout?

My first week on Ibrutinib has gone fairly well - tummy upset on the 3rd day only when my weight dropped to below 8 stone. It’s stabilised now and I’m enjoying...

My first week on Ibrutinib has gone fairly well - tummy upset on the 3rd day onl...

•7 years ago

Hemoglobin, platelets not responding after chemo

I was diagnosed with CLL 6 years ago. Last month, after a significant spike in WBC (over 400k), I hospitalized for my first chemo treatments. Received 2...

I was diagnosed with CLL 6 years ago. Last month, after a significant spike in ...

•7 years ago

At what point should a bone marrow and lymph node biopsy be done

I am Canadian being treated in London, Ontario. I was diagnosed with SLL in early 2015 with an enlarged spleen and lymph node (but not sure how long it was...

I am Canadian being treated in London, Ontario. I was diagnosed with SLL in ear...

•7 years ago

Spreadsheet for Lab results

Anyone have a link to a spreadsheet that can be used to capture the lab results related to CLL? I thought there was one on this sight. Thanks in advance.

Anyone have a link to a spreadsheet that can be used to capture the lab results ...

•7 years ago

Reaching MRD negative on ibrutinib

Hi all I wondered whether anyone here has reached MRD negative on ibrutinib and stopped treatment. My partner is expecting to start treatment soon, probably...

Hi all I wondered whether anyone here has reached MRD negative on ibrutinib and ...

•7 years ago

Feeling very annoyed

Oh dear.....hubby has a severe urinary tract infection from the catheters......but this started on Sunday whilst on the ward and the dr did not want to...

Oh dear.....hubby has a severe urinary tract infection from the catheters......b...

•7 years ago

Sleepless night

I didn't sleep very well last night, silly thoughts kept going around in my head and I can't get this question out of my head which I think is probably just...

I didn't sleep very well last night, silly thoughts kept going around in my hea...

•7 years ago

Looking for the post on the stage 2 trial of treatment of AIHA (anemia)

I had seen this post recently and could not find it when I wanted to share it with my oncologist. I have AIHA associated with CLL was treated with Rituxin +...

I had seen this post recently and could not find it when I wanted to share it wi...

•7 years ago

CLL Deletion 17p in partially paralyzed father

My father has recently been diagnosed with CLL with deletion 17p. This follows a diagnosis and treatment of Non-Hodgkins Lymphoma 10 years ago. His brother was...

My father has recently been diagnosed with CLL with deletion 17p. This follows a...

•7 years ago

What is it?

Ok I have a fungus in lungs. but need do lung biopsy to see which one. Not thrilled because of pain. I can't even take deep breath. Then if is have take...

Ok I have a fungus in lungs. but need do lung biopsy to see which one. Not thri...

•7 years ago

Delayed 2nd FCR 🙄

Well I was mentally prepared for my 2nd FCR on May 8th but not physically it seems. I had my blood tests today and my WBC was down from 149 to 1.9, fantastic!...

Well I was mentally prepared for my 2nd FCR on May 8th but not physically it see...

•7 years ago

Eye Irratations

Re: eye irritations /blepheritis (sp) I have blepheritis and my doc said to wash 2x day w/ Johnsons baby wash/shampoo and to take fish oil or flaxseed oil 2x...

Re: eye irritations /blepheritis (sp) I have blepheritis and my doc said to wash...

•7 years ago

Feeling confused

Okay yesterday we were all jumping for joy because hubbys bloods were all in normal range but today they are all back in the red. HB 95 WBC 147 What...

Okay yesterday we were all jumping for joy because hubbys bloods were all in nor...

•7 years ago

CLL Ireland

What an emotional and informative day for all that attended Irelands first national CLL day . Honoured to be involved with a fantastic team . Thanks to all...

What an emotional and informative day for all that attended Irelands first nati...

•7 years ago

Treatment starts tomorrow.

Well, here we are - OH was diagnosed in August 2014, so W&W didn't last as long as we had hoped it would. Most figures have remained fairly stable, but...

Well, here we are - OH was diagnosed in August 2014, so W&W didn't last as long ...

shoppingtrolley

•7 years ago

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