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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
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
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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
8 hours 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
22 hours 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 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
4 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
5 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
8 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
12 days ago
Bone loss, due to any CLL treatments?
This is not strictly related to CLL. My sister has had chemotherapy for breast cancer, which caused bone loss/reduction of bone density, especially in the jaw area. Are there any CLL treatments that cause bone loss?
This is not strictly related to CLL. My sister has had chemotherapy for breast cancer, which caused bone loss/reduction of bone density, especially in the jaw area. Are there any CLL treatments that cause bone loss?
MistyMountainHop
in
CLL Support
18 days ago
Muddled
Hi All - the brain is muddled and I can’t find what I’m looking for but remember seeing a discussion about taking Vit D3 while on Jakafi (rux) for my PV. Also I’ve developed a pain just below my left knee and it’s down to some osteo as well as osteopenia, alongside a “fracture” in the tibial plateau
Hi All - the brain is muddled and I can’t find what I’m looking for but remember seeing a discussion about taking Vit D3 while on Jakafi (rux) for my PV. Also I’ve developed a pain just below my left knee and it’s down to some osteo as well as osteopenia, alongside a “fracture” in the tibial plateau
Anouchka
in
MPN Voice
22 days ago
New to Rux
Hi everyone. Thank you all for all the useful replies I got to my last question. Two more queries here: I'm newly diagnosed with post-ET Myelofibrosis and I've just collected my first prescription of Jakavi which I haven't taken yet.I noticed that the tablets are 20mg, and I have to take 2 a day. Someone
Hi everyone. Thank you all for all the useful replies I got to my last question. Two more queries here: I'm newly diagnosed with post-ET Myelofibrosis and I've just collected my first prescription of Jakavi which I haven't taken yet.I noticed that the tablets are 20mg, and I have to take 2 a day. Someone
Sivasi
in
MPN Voice
22 days ago
Shingles and Ruxolitinib
I note that on the Blood Cancer web site is states that [i]Aciclovir is an anti-viral medication that prevents shingles, which can be a side effect of Ruxolitinib.[/i] [i]If you’re on Ruxolitinib, you have to be careful about your skin,[/i] I was told to be aware and careful of my skin when taking
I note that on the Blood Cancer web site is states that [i]Aciclovir is an anti-viral medication that prevents shingles, which can be a side effect of Ruxolitinib.[/i] [i]If you’re on Ruxolitinib, you have to be careful about your skin,[/i] I was told to be aware and careful of my skin when taking
nanmc
in
MPN Voice
25 days 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
25 days 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
27 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
28 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
28 days 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? On the other site there were a few who had had MF for quite few years but with treatment were doing ok, and weren’t having transplants, for
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? On the other site there were a few who had had MF for quite few years but with treatment were doing ok, and weren’t having transplants, for
lizzziep
in
MPN Voice
1 month 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
1 month ago
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