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Leukaemia
Care Online Support Group -
Leukaemia
Care AML group -
Leukaemia
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Leukaemia
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
3 months ago
On another subject …
Inspired bya post on another site I’d like to ask if anyone has high risk mutations and has NOT had a stem cell transplant and has NOT progressed to
leukaemia
?
Inspired bya post on another site I’d like to ask if anyone has high risk mutations and has NOT had a stem cell transplant and has NOT progressed to
leukaemia
?
lizzziep
in
MPN Voice
7 days 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
3 months ago
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Low vitamin d high serum ferritin
Is the high serum ferritin a sign of
leukaemia
as I have read it may be? Thanks in advance for any replies.
Is the high serum ferritin a sign of
leukaemia
as I have read it may be? Thanks in advance for any replies.
Debs4
in
CLL Support
14 days 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
8 months ago
Myelodydisplasia (?)Leukaemia
So can someone tell me if this is what CLL can turn into? and how much worse than CLL is it? Many thanks, Veronica
So can someone tell me if this is what CLL can turn into? and how much worse than CLL is it? Many thanks, Veronica
Veebeegeebee
in
CLL Support
28 days 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
5 months 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 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
1 year ago
Advice welcome
He is starting to walk more after lengthy treatment for
leukaemia
. Has anyone out there any advice as to how to manage this sometimes debilitating condition? Thank you in advance
He is starting to walk more after lengthy treatment for
leukaemia
. Has anyone out there any advice as to how to manage this sometimes debilitating condition? Thank you in advance
Limpet72
in
Lung Conditions Community Forum
21 days 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
5 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
8 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
5 months ago
sct update so far
I just wanted let you all know how iam getting on I have been in since the 29 and have been having chemo daily I have had no side effects so far my doctor said I can take chemotherapy like water but don’t get to ahead of myself as this is the easy bit which I knew from countless hours of research but
I just wanted let you all know how iam getting on I have been in since the 29 and have been having chemo daily I have had no side effects so far my doctor said I can take chemotherapy like water but don’t get to ahead of myself as this is the easy bit which I knew from countless hours of research but
Leighcox85
in
MPN Voice
6 hours ago
Rusfertide (for HCT Control)- FDA status
I came across this info today. Mar 28 2024: "Protagonist Therapeutics said it plans to seek FDA approval for rusfertide for treating polycythemia vera in late 2025" https://www.cancer.gov/news-events/cancer-currents-blog/2024/rusfertide-polycythemia-vera-fewer-phlebotomies and an explanation why it
I came across this info today. Mar 28 2024: "Protagonist Therapeutics said it plans to seek FDA approval for rusfertide for treating polycythemia vera in late 2025" https://www.cancer.gov/news-events/cancer-currents-blog/2024/rusfertide-polycythemia-vera-fewer-phlebotomies and an explanation why it
EPguy
in
MPN Voice
2 days ago
Switch from Besremi to Jakafi
I am a PV patient 57 years old diagnosed at age 50 and considered low risk. First five years after diagnosis I was treated with monthly phlebotomy and baby aspirin only. 5 yrs of monthly phlebotomy took its toll and iron deficiency and high platelets led me to besremi which had just been approved
I am a PV patient 57 years old diagnosed at age 50 and considered low risk. First five years after diagnosis I was treated with monthly phlebotomy and baby aspirin only. 5 yrs of monthly phlebotomy took its toll and iron deficiency and high platelets led me to besremi which had just been approved
mfh7
in
MPN Voice
3 days ago
Anyone turn down a stem cell transplant?
I have post ET MF. Currently I'm on Rux and getting monthly cycles of 5 aza. I don't need transfusions. Day to day I feel pretty good and can do most of what I want. The SCT was recommended because of the risk of progression to AML. I'm finding the decision making to get the SCT very difficult. My
I have post ET MF. Currently I'm on Rux and getting monthly cycles of 5 aza. I don't need transfusions. Day to day I feel pretty good and can do most of what I want. The SCT was recommended because of the risk of progression to AML. I'm finding the decision making to get the SCT very difficult. My
LongETinUS
in
MPN Voice
3 days ago
Different mutation?
I was just checking via my NHS app what had been sent to my GP, when I noticed on a letter from Guys this - it listed my mutations - CGN - normal karotype, NGS - CALR, L2AF1, ASXL2. (High risk markers) Previously I thought I was ASXL1, it could be a typo I suppose but does anyone know the difference
I was just checking via my NHS app what had been sent to my GP, when I noticed on a letter from Guys this - it listed my mutations - CGN - normal karotype, NGS - CALR, L2AF1, ASXL2. (High risk markers) Previously I thought I was ASXL1, it could be a typo I suppose but does anyone know the difference
lizzziep
in
MPN Voice
7 days ago
Effective Management of Polycythemia Vera With Ropeginterferon Alfa-2b Treatment
Discussion; The results in our study demonstrate that the new dosing regimen of 250-350-500 µg of ropeginterferon alfa-2b is well-tolerated and highly efficacious in patients suffering from PV. This dosing regimen was associated with a rapid achievement of CHR without the need for phlebotomy or erythrocyte
Discussion; The results in our study demonstrate that the new dosing regimen of 250-350-500 µg of ropeginterferon alfa-2b is well-tolerated and highly efficacious in patients suffering from PV. This dosing regimen was associated with a rapid achievement of CHR without the need for phlebotomy or erythrocyte
Manouche
in
MPN Voice
12 days ago
Jakavi advice please
Hi everybodyI learned today that my ET has progressed to MF. I had a bone marrow biopsy which seems to confirm it, although a spleen scan showed my spleen is completely normal. I'm on Pegasys 135ml at the moment but platelets are 729 (going up) and not well controlled. The consultant suggests moving
Hi everybodyI learned today that my ET has progressed to MF. I had a bone marrow biopsy which seems to confirm it, although a spleen scan showed my spleen is completely normal. I'm on Pegasys 135ml at the moment but platelets are 729 (going up) and not well controlled. The consultant suggests moving
Sivasi
in
MPN Voice
15 days ago
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