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Leukaemia
Care Online Support Group -
Leukaemia
Care AML group -
Leukaemia
Care APL group -
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
4 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
1 month 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
4 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
1 month 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
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
8 months ago
Struggling Financially with Leukaemia?
I was diagnosed with CLL in July 2013 and had already been registered with Macmillan in 2004 when I had bowel cancer, although at that time I didn't need much help other than problems with stoma bags and local support groups, both of which they helped me with. Financially I was okay being paid by my
I was diagnosed with CLL in July 2013 and had already been registered with Macmillan in 2004 when I had bowel cancer, although at that time I didn't need much help other than problems with stoma bags and local support groups, both of which they helped me with. Financially I was okay being paid by my
clifflee
in
CLL Support
4 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
6 months 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
2 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
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
6 months 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
Administrator
in
CLL Support
9 months ago
MF and anemia
Recently diagnosed, 56 years old on my 3rd month of Ruxolitinib, now have anemia and been put on ferrous fumerate. Consultant didnt want to put me on them, Anyone else had this issue?
Recently diagnosed, 56 years old on my 3rd month of Ruxolitinib, now have anemia and been put on ferrous fumerate. Consultant didnt want to put me on them, Anyone else had this issue?
Lallybroch1
in
MPN Voice
1 day ago
A bit of advice please.
Hello Everyone I have ET JAK2 and currently taking Hydroxycarbamide. I have be reading about ruxolitinib and wondered if anyone out there takes this medication to treat ET JAK2 ? I have read that this is to treat PV whilst also read about it being used for ET JAK2 so I’m a bit confused 🫤 Yvonne
Hello Everyone I have ET JAK2 and currently taking Hydroxycarbamide. I have be reading about ruxolitinib and wondered if anyone out there takes this medication to treat ET JAK2 ? I have read that this is to treat PV whilst also read about it being used for ET JAK2 so I’m a bit confused 🫤 Yvonne
YBSx
in
MPN Voice
2 days ago
Choices.
My name is Tania - I was diagnosed with myelofibrosis 8 1/2 years ago at the age of 50. I have been on ruxolitinib for the last 3 1/2 years and am now in a position where it is no longer working as it was and I need to decide where to go from here. I have been offered places on trials which are taking
My name is Tania - I was diagnosed with myelofibrosis 8 1/2 years ago at the age of 50. I have been on ruxolitinib for the last 3 1/2 years and am now in a position where it is no longer working as it was and I need to decide where to go from here. I have been offered places on trials which are taking
Petsgalore
in
MPN Voice
3 days ago
Sorry it has been a while with an update on Ruxolitinib
The last time I wrote to you all was about 2/3 years ago when I started Ruxolitinib. The first 6 to 8 months I was a different person, I felt great. I started to swim, (200 lengths in 1.5 hours) then I started to get water infections, one after the other, chest infections, ear infections and shingles
The last time I wrote to you all was about 2/3 years ago when I started Ruxolitinib. The first 6 to 8 months I was a different person, I felt great. I started to swim, (200 lengths in 1.5 hours) then I started to get water infections, one after the other, chest infections, ear infections and shingles
wendycu
in
MPN Voice
5 days ago
Ruxolitinib - declining efficacy?
Hi everyone I’ve had PV for 12 years or so and have been on Ruxolitinib for the past 7 years with great success. My platelets dropped to around 450 and my haematocrit has been stable, with no side effects. My general health and fatigue levels have improved markedly. However over the past 18 months my
Hi everyone I’ve had PV for 12 years or so and have been on Ruxolitinib for the past 7 years with great success. My platelets dropped to around 450 and my haematocrit has been stable, with no side effects. My general health and fatigue levels have improved markedly. However over the past 18 months my
Rob58
in
MPN Voice
6 days ago
Jak2 question and PV question (have medical anxiety so nervous)
Hey everyone sorry for such a long message. I'm a 28M and have had consistent high RBC, HGB, HCT counts for about 8 years now. The numbers though are ever so slightly elevated and range from (5.9-6.1 RBC), (16.7-17.2HGB),and(49-50.4 HCT) during those 8 years they each either went up or down and did NOT
Hey everyone sorry for such a long message. I'm a 28M and have had consistent high RBC, HGB, HCT counts for about 8 years now. The numbers though are ever so slightly elevated and range from (5.9-6.1 RBC), (16.7-17.2HGB),and(49-50.4 HCT) during those 8 years they each either went up or down and did NOT
HockeyFan47
in
MPN Voice
10 days ago
Myelofibrosis - pain in quad muscles
Hi All, I have previously posted the group about this (and drew a negative response), but am interested to ascertain whether any newcomers with Jak 2 myelofibrosis are experiencing pain in their quads (thigh muscles) when walking or running. My specialists are baffled by this, and I can find no mention
Hi All, I have previously posted the group about this (and drew a negative response), but am interested to ascertain whether any newcomers with Jak 2 myelofibrosis are experiencing pain in their quads (thigh muscles) when walking or running. My specialists are baffled by this, and I can find no mention
TimGS
in
MPN Voice
13 days 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
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