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MPN Specialists in Uk
As my father died 3 days after his diagnosis of
Acute
Myeloid
Leukaemia
I am feeling concerned about the rapid changes I am experiencing. I have known my haematologist for over 14 years as he was also my husband's consultant for his Mantel Cell Lymphoma.
As my father died 3 days after his diagnosis of
Acute
Myeloid
Leukaemia
I am feeling concerned about the rapid changes I am experiencing. I have known my haematologist for over 14 years as he was also my husband's consultant for his Mantel Cell Lymphoma.
16Gardinia
in
MPN Voice
1 month 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
in
Leukaemia Support
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
7 months ago
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What are the stages of myelofibrosis
My husband of 81 was diagnosed with myelofibrosis last week after having Jack2 negative essential thrombocythaemia since 2009. His consultant will be watching him closely for the next few months and has not yet prescribed any treatment. She gave us an information pamphlet to read, which we found very
My husband of 81 was diagnosed with myelofibrosis last week after having Jack2 negative essential thrombocythaemia since 2009. His consultant will be watching him closely for the next few months and has not yet prescribed any treatment. She gave us an information pamphlet to read, which we found very
Richinspirit
in
MPN Voice
2 days ago
Deep Brain Stimulator
I know this is way out of this forum, but I can't find a group to discuss with. I had a deep brain stimulator surgical procedure to help with an Essential Tremor in my hand. I had my dominate hand done 11 yrs ago at a different hospital. Had no issues with the results. At the end of May I had my other
I know this is way out of this forum, but I can't find a group to discuss with. I had a deep brain stimulator surgical procedure to help with an Essential Tremor in my hand. I had my dominate hand done 11 yrs ago at a different hospital. Had no issues with the results. At the end of May I had my other
Beth1949
in
Lung Conditions Community Forum
3 days ago
Wales.
I live near Carmarthen. South wales. I have blood cancer MPN Essential thrombocythemia. Does anyone else have this condition as I haven't been given a PALS or anyone to talk to. In England I here I would have had one, or been able to speak to someone. Any help to speak to someone would be great. This
I live near Carmarthen. South wales. I have blood cancer MPN Essential thrombocythemia. Does anyone else have this condition as I haven't been given a PALS or anyone to talk to. In England I here I would have had one, or been able to speak to someone. Any help to speak to someone would be great. This
mag123ben
in
MPN Voice
10 days ago
Jakafi/Weight Gain
I will preface this by saying that I am truly grateful that I am feeling better on Jakafi. It has only been two months, but my numbers are better and most importantly, I am not having the debilitating side effects of GI issues that were ruining my life on Besremi. So, I do realize that health is number
I will preface this by saying that I am truly grateful that I am feeling better on Jakafi. It has only been two months, but my numbers are better and most importantly, I am not having the debilitating side effects of GI issues that were ruining my life on Besremi. So, I do realize that health is number
Miriammusic
in
MPN Voice
13 days ago
A Blip in time!
I am 74 (F) and was diagnosed in Nov, 2019 with PV and JAK 2 positive. I have been in clinical remission for 18 months and take Jakafi 10mg 2x daily. I have an allele burden of 15 currently down from 60 at diagnosis. My blood draws have been within limits for 18 months with only a blip in the blood calcium
I am 74 (F) and was diagnosed in Nov, 2019 with PV and JAK 2 positive. I have been in clinical remission for 18 months and take Jakafi 10mg 2x daily. I have an allele burden of 15 currently down from 60 at diagnosis. My blood draws have been within limits for 18 months with only a blip in the blood calcium
Barney50
in
MPN Voice
15 days ago
Jakafi - Chronic Myelofibrosis
I’m 72 years old hispanic female & was diagnosed with Chronic Myeloproliferative Disorder - Primary Myelofibrosis on January 2024. I started with Jakafi 10 mg (bid) on February 2024 & my symptoms have been very interesting. During the 1st two weeks I experienced nauseas & dizziness with both dosages
I’m 72 years old hispanic female & was diagnosed with Chronic Myeloproliferative Disorder - Primary Myelofibrosis on January 2024. I started with Jakafi 10 mg (bid) on February 2024 & my symptoms have been very interesting. During the 1st two weeks I experienced nauseas & dizziness with both dosages
Fresa7
in
MPN Voice
24 days ago
Myelofibrosis- GVHD graft, versus, host, disease.
Hi, thanks for accepting me onto your site. My name is Gary, I am 64 years old and was diagnosed with Myelofibrosis in July, 2024. It all started when I began to feel lethargic and very tired, I had no inspiration to do anything. I was a taxi driver and was only managing to work one or two days a week
Hi, thanks for accepting me onto your site. My name is Gary, I am 64 years old and was diagnosed with Myelofibrosis in July, 2024. It all started when I began to feel lethargic and very tired, I had no inspiration to do anything. I was a taxi driver and was only managing to work one or two days a week
FreemanSaviors
in
MPN Voice
25 days ago
Myelofibrosis - GVHD - graft, versus, host, disease
Hi, thanks for accepting me onto the site. My name is Gary, I am 64 years old and was diagnosed with Myelofibrosis in July, 2024. It all started when I began to feel lethargic and very tired, I had no inspiration to do anything. I was a taxi driver and was only managing to work one or two days a week
Hi, thanks for accepting me onto the site. My name is Gary, I am 64 years old and was diagnosed with Myelofibrosis in July, 2024. It all started when I began to feel lethargic and very tired, I had no inspiration to do anything. I was a taxi driver and was only managing to work one or two days a week
FreemanSaviors
in
MPN Voice
25 days ago
STEM CELL TRANSPLANT FINALLY SCHEDULED (WE HOPE)
Hi everyone. As you may know, my husband was diagnosed with CLL back in 2013, treated with six cycles of FCR, and achieved a "full response with incomplete recovery of the bone marrow." He had severe complications after treatment, but the CLL never recurred. In November 2023 he began to experience
Hi everyone. As you may know, my husband was diagnosed with CLL back in 2013, treated with six cycles of FCR, and achieved a "full response with incomplete recovery of the bone marrow." He had severe complications after treatment, but the CLL never recurred. In November 2023 he began to experience
dwolden
in
CLL Support
28 days ago
Clinical impact of mutated JAK2 allele burden reduction in polycythemia vera and essential thrombocythemia
»The variant allele frequency (VAF) of driver mutations (JAK2, CALR) in myeloproliferative neoplasms is associated with features of advanced disease and complications. Ruxolitinib and interferon were reported to variably reduce the mutant VAF, but the long-term impact of molecular responses (MR) remains
»The variant allele frequency (VAF) of driver mutations (JAK2, CALR) in myeloproliferative neoplasms is associated with features of advanced disease and complications. Ruxolitinib and interferon were reported to variably reduce the mutant VAF, but the long-term impact of molecular responses (MR) remains
Manouche
in
MPN Voice
1 month ago
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 community - offered by HealthUnlocked (HU) - supports individuals affected by leukaemia. Whether you are an individual who has been diagnosed, a
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 community - offered by HealthUnlocked (HU) - supports individuals affected by leukaemia. Whether you are an individual who has been diagnosed, a
BrettHU
HealthUnlocked
in
Leukaemia Support
1 month 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
2 months 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 months 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
2 months 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
2 months 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
2 months 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
2 months ago
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