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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 profile image
LCAlex
Administratorin Leukaemia CARE
13 days 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 profile image
LCAlex
Administratorin Leukaemia CARE
3 months ago

ET accelerated progression

I now need to be treated to try to halt progression to acute leukaemia and if successful followed by a bone marrow transplant. this has come as rather a shock Is anyone else going through this?
I now need to be treated to try to halt progression to acute leukaemia and if successful followed by a bone marrow transplant. this has come as rather a shock Is anyone else going through this?
Smdg profile image
Smdg
in MPN Voice
8 months ago
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Webinar 3.30pm on Thursday - What can help when talking to others about your diagnosis? - Particularly relevant today during the COVID era.

Panel: Jamie Woods acute leukaemia patient Margaret Miller chronic lymphocytic leukaemia patient Caroline Kerr, Clinical Nurse Specialist for Leukaemia & MPN at Belfast City Hospital, Belfast Health and Social Care Trust Catherine Langton, Myeloid Specialist Nurse at Leeds Teaching Hospitals NHS
Panel: Jamie Woods acute leukaemia patient Margaret Miller chronic lymphocytic leukaemia patient Caroline Kerr, Clinical Nurse Specialist for Leukaemia & MPN at Belfast City Hospital, Belfast Health and Social Care Trust Catherine Langton, Myeloid Specialist Nurse at Leeds Teaching Hospitals NHS
HAIRBEAR_UK profile image
HAIRBEAR_UK
Administratorin Leukaemia CARE
1 year ago

An antibody for myelofibrosis – “that’s a true discovery”

In about 20% of people with myelofibrosis, if left unchecked, this severe type of myeloproliferative neoplasm (MPN) can transform to acute leukaemia. “We still don’t know why some patients progress quickly and some slowly.
In about 20% of people with myelofibrosis, if left unchecked, this severe type of myeloproliferative neoplasm (MPN) can transform to acute leukaemia. “We still don’t know why some patients progress quickly and some slowly.
socrates_8 profile image
socrates_8
in MPN Voice
10 months ago

new mutations

just had my second BMB a couple of months ago. Had been taking aspirin and monthly phlebotomy until 3 months ago when started hydroxyurea. My BMB now showed a new mutation IDH1 and allele burden increased from 24% to 52%. Didn’t need a phlebotomy this month but will be starting Besremi mid d June.
just had my second BMB a couple of months ago. Had been taking aspirin and monthly phlebotomy until 3 months ago when started hydroxyurea. My BMB now showed a new mutation IDH1 and allele burden increased from 24% to 52%. Didn’t need a phlebotomy this month but will be starting Besremi mid d June.
Teachme85 profile image
Teachme85
in MPN Voice
5 days ago

has anyone gotten a rash on their feet from hydroxyurea or just having thrombocytosis

I am reaching out to you wonderful people again. I have a red blotchy rash on my feet and have had this for a year. Someone called it micro vascular but I am not too sure what that is or if this is correct. I have been taking hydroxyurea since the fall of 2020, I have essential thrombocytosis jak
I am reaching out to you wonderful people again. I have a red blotchy rash on my feet and have had this for a year. Someone called it micro vascular but I am not too sure what that is or if this is correct. I have been taking hydroxyurea since the fall of 2020, I have essential thrombocytosis jak
kitttycat profile image
kitttycat
in MPN Voice
13 days ago

update

we’ll I had THE meeting with my haematologist yesterday with my son supporting me. Our meeting lasted the best part of 2 hours (!) during which we thrashed out many of the uncomplimentary things I had said about him. It never needed to escalate to the level it did if he had explained that Claire Harrison
we’ll I had THE meeting with my haematologist yesterday with my son supporting me. Our meeting lasted the best part of 2 hours (!) during which we thrashed out many of the uncomplimentary things I had said about him. It never needed to escalate to the level it did if he had explained that Claire Harrison
beetle profile image
beetle
in MPN Voice
17 days ago

Rusfertide...

I haven't come across any dialog about this drug on this website. It popped up on my many searches for additional info about treatment for Polycythemia Vera. It is currently in phase 2 of a clinical trial at Stanford University and so far, results with patients have been good. It sounds like
I haven't come across any dialog about this drug on this website. It popped up on my many searches for additional info about treatment for Polycythemia Vera. It is currently in phase 2 of a clinical trial at Stanford University and so far, results with patients have been good. It sounds like
K-itty profile image
K-itty
in MPN Voice
18 days ago

Can you manage the psychological impact of treatment relapse?

Audience: Those affected by acute leukaemia treatment relapse, CLL patients whose current treatment has stopped working, or whose disease has returned from previous treatments.
Audience: Those affected by acute leukaemia treatment relapse, CLL patients whose current treatment has stopped working, or whose disease has returned from previous treatments.
HAIRBEAR_UK profile image
HAIRBEAR_UK
Administratorin Leukaemia CARE
1 year ago

Myelofibrosis and fedratinib

Just needing a bit of a moan. I've had high risk MF now for many years. Last year I was assessed for STC transplant but was told I was not robust enough so as I am now over 70 and resident in Scotland, that is no longer an option for me. No transplants available for the over 70s apparently. I had been
Just needing a bit of a moan. I've had high risk MF now for many years. Last year I was assessed for STC transplant but was told I was not robust enough so as I am now over 70 and resident in Scotland, that is no longer an option for me. No transplants available for the over 70s apparently. I had been
Bullace profile image
Bullace
in MPN Voice
19 days ago

Life beyond Myelofibrosis

I progressed from ET to Myelofibrosis a couple of years ago. I had an enlarged spleen and ruxolitinib lowered the platelets too much so I was switched to fedratinib. Depending on what predictive tool was used, I had a median predicted life span of between 2 and 14 years - not terribly helpful! I was
I progressed from ET to Myelofibrosis a couple of years ago. I had an enlarged spleen and ruxolitinib lowered the platelets too much so I was switched to fedratinib. Depending on what predictive tool was used, I had a median predicted life span of between 2 and 14 years - not terribly helpful! I was
Scaredy_cat profile image
Scaredy_cat
in MPN Voice
20 days ago

introducing myself...

hello all, i'm new to this community and happy to be a part. i was diagnosed with AML in late august of last year and just underwent a Stem Cell Transplant at sloan kettering hospital in new york city in late march. i'm wondering if anyone out there has experienced the same? looking forward to hearing
hello all, i'm new to this community and happy to be a part. i was diagnosed with AML in late august of last year and just underwent a Stem Cell Transplant at sloan kettering hospital in new york city in late march. i'm wondering if anyone out there has experienced the same? looking forward to hearing
jmcasbar profile image
jmcasbar
in Leukaemia CARE
21 days ago

Besremi

I keep thinking of additional questions to ask here in addition to my previous posts about Jakafi.When my oncologist suggested that I start this drug after trying to take HU, I suggested Besremi? He said he can't get it although he's tried several places? I'm confused? Is it not offered in
I keep thinking of additional questions to ask here in addition to my previous posts about Jakafi.When my oncologist suggested that I start this drug after trying to take HU, I suggested Besremi? He said he can't get it although he's tried several places? I'm confused? Is it not offered in
K-itty profile image
K-itty
in MPN Voice
25 days ago

Jakafi

I'm to start on Jakafi soon, after not being able to tolerate HU. Are some of you on this site currently on Jakafi and what side effects have you experienced? Weight gain, fatigue, hair loss, high cholesterol? How long before you began noticing side effects after starting the RX? What were your
I'm to start on Jakafi soon, after not being able to tolerate HU. Are some of you on this site currently on Jakafi and what side effects have you experienced? Weight gain, fatigue, hair loss, high cholesterol? How long before you began noticing side effects after starting the RX? What were your
K-itty profile image
K-itty
in MPN Voice
25 days ago

Ruxolitinib plus Hydrea

Hi everyone I was supposed to start on IFN but my heamatologist is asking other consultants if Ruxolitinib and hydrea can be combined. Was on hydrea for Sixteen years but stopped controlling my platelets. Now on Ruxolitinib but can’t tolerate a high dose. She thinking lower dose both. Has anyone tried
Hi everyone I was supposed to start on IFN but my heamatologist is asking other consultants if Ruxolitinib and hydrea can be combined. Was on hydrea for Sixteen years but stopped controlling my platelets. Now on Ruxolitinib but can’t tolerate a high dose. She thinking lower dose both. Has anyone tried
Mudmaker profile image
Mudmaker
in MPN Voice
25 days ago

While on Watch and Wait

When you are newly diagnosed with CLL , is it normal to be placed on W&W and not be given the following test, FISH , TP53 , AND IGHV ? My GP did have me see the oncologist , who order the Leukemia/Lymphoma Eval. and a Flow Cytometry test. It sounds like some Doctors only order the test when
When you are newly diagnosed with CLL , is it normal to be placed on W&W and not be given the following test, FISH , TP53 , AND IGHV ? My GP did have me see the oncologist , who order the Leukemia/Lymphoma Eval. and a Flow Cytometry test. It sounds like some Doctors only order the test when
Seeker090260 profile image
Seeker090260
in CLL Support
27 days ago

Prefibrotic Myelofibrosis and I hate Hydroxyurea (HU)

Recently diagnosed, first with ET. And put on 500mg hydroxyurea daily with platelets at 617. After bone marrow aspiration and biopsy, diagnosis changed to prefibrotic myelofibrosis. HU had brought platelets down to 270 but I suffered from very bad side effects. Dr didn’t want to change med or dosage.
Recently diagnosed, first with ET. And put on 500mg hydroxyurea daily with platelets at 617. After bone marrow aspiration and biopsy, diagnosis changed to prefibrotic myelofibrosis. HU had brought platelets down to 270 but I suffered from very bad side effects. Dr didn’t want to change med or dosage.
Apple238 profile image
Apple238
in Leukaemia CARE
28 days ago

Prefibrotic myelofibrosis and I hate hydroxyurea (HU)

Recently diagnosed first with ET. put on 500mg hydroxyurea daily with platelets at 617. After bone marrow aspiration and biopsy, diagnosis changed to prefibrotic myelofibrosis. HU had brought platelets down to 270 but I suffered from very bad side effects. Dr didn’t want to change med or dosage. I resisted
Recently diagnosed first with ET. put on 500mg hydroxyurea daily with platelets at 617. After bone marrow aspiration and biopsy, diagnosis changed to prefibrotic myelofibrosis. HU had brought platelets down to 270 but I suffered from very bad side effects. Dr didn’t want to change med or dosage. I resisted
Apple238 profile image
Apple238
in MPN Voice
28 days ago

Ruxolitinib Versus Best Available Therapy for Polycythemia Vera posted by Manouche

Manouche posted the very new Majic-PV trial. Some thoughts (sorry it's not better organized, I'm not top of my game these days): Rux is looking similar to IFN for allele reductions (My Dr sort of said "I told you so") This like most other Rux studies have been handicapped by selecting for HU intolerant
Manouche posted the very new Majic-PV trial. Some thoughts (sorry it's not better organized, I'm not top of my game these days): Rux is looking similar to IFN for allele reductions (My Dr sort of said "I told you so") This like most other Rux studies have been handicapped by selecting for HU intolerant
EPguy profile image
EPguy
in MPN Voice
1 month ago
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