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Care CLL group Helpline (available Monday - Friday, 9 am - 5 pm) Information Booklets
Leukaemia
Counselling Service WhatsApp Service Our team is dedicated to ensuring a smooth transition
NicoleLeukaemiaCare
Administrator
in
Leukaemia CARE
2 months ago
Cll back after 4yrs
Hospital found lymph nodes in neck and think my
leukaemia
is back. I have been cancer free for4yrs. Has this happened to anyone else. What happens next.
Hospital found lymph nodes in neck and think my
leukaemia
is back. I have been cancer free for4yrs. Has this happened to anyone else. What happens next.
Daisy1993
in
CLL Support
2 months ago
p17 deletion. Can anyone advise or cheer me up?!
I’m 79, living in UK and 18 months into being diagnosed with Chronic lymphocytic
leukaemia
(CLL) and suspected Chronic myelomonocytic
leukaemia
(CMML), I have been still at early stage and not needing treatment.
I’m 79, living in UK and 18 months into being diagnosed with Chronic lymphocytic
leukaemia
(CLL) and suspected Chronic myelomonocytic
leukaemia
(CMML), I have been still at early stage and not needing treatment.
Fogey
in
CLL Support
6 months ago
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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 in doing so we need to understand what aspects of treatment are most important to them.
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 in doing so we need to understand what aspects of treatment are most important to them.
LCAlex
Administrator
in
Leukaemia CARE
10 months ago
confused!!!
Apparently all my tests just show low grade
leukaemia
and so was told if I was given treatment to reduce the CLL he doubts I would feel any better!
Apparently all my tests just show low grade
leukaemia
and so was told if I was given treatment to reduce the CLL he doubts I would feel any better!
Dragonfly766
in
CLL Support
3 months ago
March 2023 Treatment Update Webinars
THIS WEEK: ‘Latest advances in the treatment of acute myeloid
leukaemia
(AML)’ - Tuesday 21st @ 3:30pm NEXT WEEK: ‘Latest advances in the treatment of chronic lymphocytic
leukaemia
(CLL)’ - Monday 27th @ 7pm ‘Latest advances in the treatment of chronic myeloid
leukaemia
(CML)’ - Tuesday
THIS WEEK: ‘Latest advances in the treatment of acute myeloid
leukaemia
(AML)’ - Tuesday 21st @ 3:30pm NEXT WEEK: ‘Latest advances in the treatment of chronic lymphocytic
leukaemia
(CLL)’ - Monday 27th @ 7pm ‘Latest advances in the treatment of chronic myeloid
leukaemia
(CML)’ - Tuesday
LCAlex
Administrator
in
Leukaemia CARE
1 year ago
Venetoclax has been added to the Pharmaceutical Benefits Scheme in Australia for use as a retreatment for CLL/SLL
The PBS Listing states: [i]"Chronic lymphocytic
leukaemia
(CLL)[/i] [i]Treatment Phase: Dose titration occurring at the start of treatment for relapsed/refractory disease[/i] [i]Clinical criteria:[/i] [i]The condition must have relapsed or be refractory to at least one prior therapy,[/i] [i]AND[
The PBS Listing states: [i]"Chronic lymphocytic
leukaemia
(CLL)[/i] [i]Treatment Phase: Dose titration occurring at the start of treatment for relapsed/refractory disease[/i] [i]Clinical criteria:[/i] [i]The condition must have relapsed or be refractory to at least one prior therapy,[/i] [i]AND[
CLLerinOz
Volunteer
in
CLL Support
7 months ago
Sweet syndrome following induction chemotherapy for acute myeloid leukaemia
An uncommon culprit of neutropenic fever: a case of Sweet syndrome following induction therapy for acute myeloid leukemia, 2023. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10660447/ Sweet's syndrome following induction chemotherapy (cytarabine and idarubicin) for acute myeloid
leukaemia
.
An uncommon culprit of neutropenic fever: a case of Sweet syndrome following induction therapy for acute myeloid leukemia, 2023. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10660447/ Sweet's syndrome following induction chemotherapy (cytarabine and idarubicin) for acute myeloid
leukaemia
.
Shell567
Sweet's Syndrome UK
in
Sweet's Syndrome UK
3 months ago
Anyone else out there with both ET & MBL?
This appears to be a relatively benign condition, more common as you get older, where the body produces too many B-lymphocytes and although it can be a precursor to Chronic Lymphocytic
Leukaemia
, in most cases it isn’t!
This appears to be a relatively benign condition, more common as you get older, where the body produces too many B-lymphocytes and although it can be a precursor to Chronic Lymphocytic
Leukaemia
, in most cases it isn’t!
AndyT
in
MPN Voice
3 months ago
UK NICE Approves Ibrutinib +Venetoclax for First Line treatment for ALL Patients from today
This has been addressed by committee because ibrutinib plus venetoclax has been recommended for everyone with untreated chronic lymphocytic
leukaemia
.[/i] Please ask your doctor if this is suitable for you if you are approaching treatment for the first time. Jackie
This has been addressed by committee because ibrutinib plus venetoclax has been recommended for everyone with untreated chronic lymphocytic
leukaemia
.[/i] Please ask your doctor if this is suitable for you if you are approaching treatment for the first time. Jackie
Jm954
Administrator
in
CLL Support
11 months ago
SCT while feeling well
I have Post ET Myelofibrosis, MPL positive, I also have another mutation, which I’ve been told will increase my chances of getting
leukaemia
. I have pretty much decided I will go through with it, but know it will be very tough.
I have Post ET Myelofibrosis, MPL positive, I also have another mutation, which I’ve been told will increase my chances of getting
leukaemia
. I have pretty much decided I will go through with it, but know it will be very tough.
SRH55
in
MPN Voice
1 year ago
Still on hold for stem cell transplant
David has now completed 3 cycles of Vidaza. He had a bone marrow biopsy several weeks ago. At first we thought the results were good, that his cancer cells had been reduced sufficiently to proceed with transplant. After our local oncologist spoke to the transplant specialist at Mayo, we received word
David has now completed 3 cycles of Vidaza. He had a bone marrow biopsy several weeks ago. At first we thought the results were good, that his cancer cells had been reduced sufficiently to proceed with transplant. After our local oncologist spoke to the transplant specialist at Mayo, we received word
dwolden
in
CLL Support
2 days ago
Besremi and Rux Combined
I was diagnosed with PV in 2021 and on Hydroxy for about a year. Then in December 2022 was switched to Besremi. I've been on Bes for a little over a year and gradually increased dosage to current 300 mcg. My platelets and HCT kept rising until my last blood work when finally the platelets and HCT
I was diagnosed with PV in 2021 and on Hydroxy for about a year. Then in December 2022 was switched to Besremi. I've been on Bes for a little over a year and gradually increased dosage to current 300 mcg. My platelets and HCT kept rising until my last blood work when finally the platelets and HCT
C_Anne_Orange
in
MPN Voice
11 days ago
Itching in Myelofibrosis
I'm currently taking Fedratinib and Danazol and am having 6 weekly blood transfusions. In the last few months I've noticed increased itching. Last night I woke at 2.30am and the itching made it impossible for me to lie still and go back to sleep. I am on 10mg of Cetirizine Hydrochloride daily and though
I'm currently taking Fedratinib and Danazol and am having 6 weekly blood transfusions. In the last few months I've noticed increased itching. Last night I woke at 2.30am and the itching made it impossible for me to lie still and go back to sleep. I am on 10mg of Cetirizine Hydrochloride daily and though
Bullace
in
MPN Voice
12 days ago
Co pay assistance exhausted for Jakafi
My BCBS coverage through my employer was changed at the new year. Someone decided I was too expensive and changed how drugs were covered. They used to apply toward my deductible and then covered 100%. At the beginning of this year that changed. Drugs no longer factor into the deductible and I have a
My BCBS coverage through my employer was changed at the new year. Someone decided I was too expensive and changed how drugs were covered. They used to apply toward my deductible and then covered 100%. At the beginning of this year that changed. Drugs no longer factor into the deductible and I have a
Wewo01
in
MPN Voice
18 days ago
The prognostic impact of non-driver gene mutations and variant allele frequency in primary myelofibrosis.
The prognostic impact of non-driver gene mutations and variant allele frequency in primary myelofibrosis. To the Editor: Myelofibrosis is a Philadelphia-negative chronic myelo-proliferative-neoplasm (MPN) characterized by alteration of the JAK–STAT path-way, primarily through activating mutations in
The prognostic impact of non-driver gene mutations and variant allele frequency in primary myelofibrosis. To the Editor: Myelofibrosis is a Philadelphia-negative chronic myelo-proliferative-neoplasm (MPN) characterized by alteration of the JAK–STAT path-way, primarily through activating mutations in
PhysAssist
in
MPN Voice
19 days ago
Just wanted to share my Primary Myelofibrosis journey so far…….
Hi all, My diagnosis is Primary Myelofibrosis +Jak-2 &V617F mutation which was in August 2022. This was found after several visits to GP for chest infections and ultrasound scans which found an enlarged spleen. Also had bloods and bone marrow biopsy sent to Bart’s hospital for confirmation. Initial
Hi all, My diagnosis is Primary Myelofibrosis +Jak-2 &V617F mutation which was in August 2022. This was found after several visits to GP for chest infections and ultrasound scans which found an enlarged spleen. Also had bloods and bone marrow biopsy sent to Bart’s hospital for confirmation. Initial
LFCLove
in
MPN Voice
20 days ago
Scientists devise novel strategy to seek and destroy leukemia stem cells
** Scientists at City of Hope, one of the largest cancer research and treatment organizations in the United States, have devised an innovative approach to target and destroy hard-to-kill leukemia stem cells. The journal Blood has published the preclinical findings. By overcoming challenges, such as
** Scientists at City of Hope, one of the largest cancer research and treatment organizations in the United States, have devised an innovative approach to target and destroy hard-to-kill leukemia stem cells. The journal Blood has published the preclinical findings. By overcoming challenges, such as
PhysAssist
in
MPN Voice
20 days ago
BESREMi now recommended as a Preferred First-line Cytoreductive Therapy for PV in Updated NCCN Clinical Practice Guidelines in Oncology
« The National Comprehensive Cancer Network Clinical Practice Guidelines in Oncology (NCCN Guidelines®) have recently been updated to include ropeginterferon alfa-2b-njft, marketed as BESREMi®, as a preferred first-line cytoreductive therapy option for the treatment of adults with symptomatic, low-risk
« The National Comprehensive Cancer Network Clinical Practice Guidelines in Oncology (NCCN Guidelines®) have recently been updated to include ropeginterferon alfa-2b-njft, marketed as BESREMi®, as a preferred first-line cytoreductive therapy option for the treatment of adults with symptomatic, low-risk
Manouche
in
MPN Voice
21 days ago
HU and Osteoblasts
Hi Group, I have ET Jak2 + and am 64yrs old My bone mass has been declining faster than I would have expected given my level of activity, genetic history and diet. I have seen some information that HU affects the production of osteoblasts as well. My info is from a quick read of Hydroxyurea Induces
Hi Group, I have ET Jak2 + and am 64yrs old My bone mass has been declining faster than I would have expected given my level of activity, genetic history and diet. I have seen some information that HU affects the production of osteoblasts as well. My info is from a quick read of Hydroxyurea Induces
nightshadow
in
MPN Voice
21 days ago
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