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Leukaemia CARE

1,274 members • 804 posts

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Community Guidelines

Welcome to the Leukaemia Support Community for support of Leukaemia! We’re very glad you have chosen to be a part of our community. The Leukaemia Support...

Welcome to the Leukaemia Support Community for support of Leukaemia! We’re ve...

HealthUnlocked•7 days ago

A message to all community members

We want to let you know that Leukaemia Care will no longer be moderating this community. Over the past few years, Leukaemia Care has provided moderation and...

We want to let you know that Leukaemia Care will no longer be moderating this c...

HealthUnlocked•7 days ago

My dad has CLL with TP53 mutation

As i am writing this im very frightened And i need someone with similar condition My dad was diagnosed back in 2019 With CLL he did about 3 sessions...

As i am writing this im very frightened And i need someone with similar co...

•2 months ago

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Any news

Hi all has anyone heard from Drunkjam_Uk. No update for a while. Hoping she is okay x

Hi all has anyone heard from Drunkjam_Uk. No update for a while. Hoping she is...

•3 months ago

Be the first to reply

CLL travel I insurance

My husband was diagnosed with CLL last July 2023. He desperately needs a holiday. We would like to visit our daughter and grandsons in Italy. We are...

My husband was diagnosed with CLL last July 2023. He desperately needs a holiday...

•4 months ago

We're closing this forum

After thorough consideration and evaluation, we want to inform you that Leukaemia Care's HealthUnlocked Online Forum Service will be closing on the 30th April...

After thorough consideration and evaluation, we want to inform you that Leukaemi...

NicoleLeukaemiaCare

•4 months ago

Christmas Eve with HCL

Hi guys bloods going in right direction feeling positive but have lots of aches and pains ..hoping to feel better soon ✨️

Hi guys bloods going in right direction feeling positive but have lots of aches ...

•6 months ago

AML hidac

I am a current AML patient having chemo treatment. Soon after Christmas, it will be my 3rd cycle of chemotherapy, it is my very first time having High dose...

I am a current AML patient having chemo treatment. Soon after Christmas, it will...

•6 months ago

Our friend Drunkjam

Has anyone heard from our lovely friend DrunkJam of late. Bit worried xx

Has anyone heard from our lovely friend DrunkJam of late. Bit worried xx

•6 months ago

AML and stem cell 12 months on

Anybody struggling with adapting to the new person they have become after all the trauma of AML?

Anybody struggling with adapting to the new person they have become after all th...

•6 months ago

Hairy cell leukemia

Anyone out there?

Anyone out there?

•7 months ago

Anyone taken Azacitidine sub Q?how many cc?where? any reactions?

anyone taken azacitine sub Q how many CC where? reactions? better to inject slow or fast?

anyone taken azacitine sub Q how many CC where? reactions? better to inject ...

•7 months ago

Abnormal smear test post transplant

Anybody had an abnormal smear test post transplant?

Anybody had an abnormal smear test post transplant?

•8 months ago

Childhood vaccines

Hi. Had my childhood vaccines just over a week ago. No issues apart from sore arm early on. However not sure if just a busy week and dsrk mornings to work but...

Hi. Had my childhood vaccines just over a week ago. No issues apart from sore ar...

•8 months ago

Taste and smell issues 11 months post transplant

Interested to hear if anybody else has experienced this?

Interested to hear if anybody else has experienced this?

•9 months ago

Post stem cell transplant vaccinations

Hi. I am 11 months post transplant (AML). I am due to have my childhood vaccines next week. Just worried about reactions etc and it not being in the safety of...

Hi. I am 11 months post transplant (AML). I am due to have my childhood vaccines...

•9 months ago

CLL /mbl

Hi newbie here and finding my way! Been a diagnosis with mbl in last few years but somehow after being unwell in recent months with higher than ever...

Hi newbie here and finding my way! Been a diagnosis with mbl in last few years b...

•10 months ago

Hello

Hi,Very new to this. Diagnosed with LCC this month. So here to find information and what to do next

Hi,Very new to this. Diagnosed with LCC this month. So here to find information...

•1 year ago

AML 7 months post transplant chimerism

I am 7 months post transplant with no MRD and blood work normal. 97% donor cells in BM. Platelets always slow to pick up, hovering around mid 60's but cause no...

I am 7 months post transplant with no MRD and blood work normal. 97% donor cells...

•1 year ago

If you have/have had an acute leukaemia, please help us by completing this survey

We’re working with ALAN (Acute Leukaemia Advocates Network) and OHE (Office of Health Economics) to understand the outcomes of people with acute leukaemia and...

We’re working with ALAN (Acute Leukaemia Advocates Network) and OHE (Office of H...

•1 year ago

Be the first to reply

introducing myself...

hello all, i'm new to this community and happy to be a part. i was diagnosed with AML in late august of last year and just underwent a Stem Cell Transplant...

hello all, i'm new to this community and happy to be a part. i was diagnosed w...

•1 year ago

Prefibrotic Myelofibrosis and I hate Hydroxyurea (HU)

Recently diagnosed, first with ET. And put on 500mg hydroxyurea daily with platelets at 617. After bone marrow aspiration and biopsy, diagnosis changed to...

Recently diagnosed, first with ET. And put on 500mg hydroxyurea daily with plate...

•1 year ago

CLL Patients Needed

Hi, I am a patient engagement manager for Patient Power. We engage cancer patients to share their stories to advocate, educate and create better outcomes for...

Hi, I am a patient engagement manager for Patient Power. We engage cancer pati...

•1 year ago

Wellbeing Workshop

Do you struggle to cope with anxiety, stress, or fatigue? Do you have trouble sleeping? Join our online wellbeing workshop on 25th April from 6pm-8pm and...

Do you struggle to cope with anxiety, stress, or fatigue? Do you have trouble sl...

•1 year ago

March 2023 Treatment Update Webinars

Our treatment update webinars are fast approaching! Webinar dates... THIS WEEK: ‘Latest advances in the treatment of acute myeloid leukaemia (AML)’...

Our treatment update webinars are fast approaching! Webinar dates... THI...

•1 year ago

Rituximab

Hi all. I am 100+ days post transplant for AML. Doing well, driving, walking, working. Have been told though that a blood test has flagged up positive for the...

Hi all. I am 100+ days post transplant for AML. Doing well, driving, walking, wo...

•1 year ago

Chemo brain

Hi does anybody else struggle with what is called chemo brain?

Hi does anybody else struggle with what is called chemo brain?

•1 year ago

Acalabrutinib and headaches

I started taking acalabrutinib in December last year. All went well for the first couple of weeks. However for the last 6 weeks I have been getting severe...

I started taking acalabrutinib in December last year. All went well for the firs...

•1 year ago

Anxiety/panic attacks

Hi, but if background. Husband has AML with FLT 3 and is going for transplant in 17 days. I’ve recently been having panic/anxiety attacks as we get closer to...

Hi, but if background. Husband has AML with FLT 3 and is going for transplant in...

•1 year ago

Wait and watch approach

I had CLL for 3 years now, I see my oncologist every 3 months, I have many enlarged lymphnods around my stomach and on both sides neck, the Dr said not in any...

I had CLL for 3 years now, I see my oncologist every 3 months, I have many enla...

georgiegirl9254

•1 year ago

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