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Webinar - 3.30pm Thursday 20th October - "How do I decide between a fixed duration treatment versus Continuous therapy for CLL?"
Panel:
Leading CLL specialist haematologists, co- authors of BSH Guidelines: Dr Renata Walewska, Consultant Haematologist at the Royal Bournemouth Hospital, Universities Dorset Hospitals NHS Trust and Chair of the UK Chronic lymphocytic
leukaemia
(CLL) Forum.
Panel:
Leading CLL specialist haematologists, co- authors of BSH Guidelines: Dr Renata Walewska, Consultant Haematologist at the Royal Bournemouth Hospital, Universities Dorset Hospitals NHS Trust and Chair of the UK Chronic lymphocytic
leukaemia
(CLL) Forum.
HAIRBEAR_UK
in
Leukaemia Support
2 years ago
Ruxolitinib and NSAIDs
Would anyone care to comment on the Jakafi label warnings against using NSAIDs? There is reportedly an increased risk of bleeding. If this is really the case, I guess I'm limited to acetaminophen for pain management.
Would anyone care to comment on the Jakafi label warnings against using NSAIDs? There is reportedly an increased risk of bleeding. If this is really the case, I guess I'm limited to acetaminophen for pain management.
sbs_patient
in
MPN Voice
2 years ago
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
in
Leukaemia Support
2 years ago
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Scientists hail autoimmune disease therapy breakthrough - implications for CLL patients?
[/i] CAR-T-therapy, first used in 2015 to treat an infant with acute lymphoblastic
leukaemia
, has since been used with some success in other forms of
leukaemia
including CLL.
[/i] CAR-T-therapy, first used in 2015 to treat an infant with acute lymphoblastic
leukaemia
, has since been used with some success in other forms of
leukaemia
including CLL.
bennevisplace
in
CLL Support
2 years ago
Navigating the Hidden Costs of Clinical Trials on Patient Power
Navigating the Hidden Costs of Clinical Trials https://www.patientpower.info/navigating-the-hidden-costs-of-clinical-trials Nearly two years ago, Brad Adams’ doctor presented him with a few options to treat his chronic lymphocytic leukemia after it returned. Adams could continue taking an oral treatment
Navigating the Hidden Costs of Clinical Trials https://www.patientpower.info/navigating-the-hidden-costs-of-clinical-trials Nearly two years ago, Brad Adams’ doctor presented him with a few options to treat his chronic lymphocytic leukemia after it returned. Adams could continue taking an oral treatment
lankisterguy
Volunteer
in
CLL Support
2 years ago
Save the date! Our first conference for over two years! We're very pleased to invite you to our conference in Glasgow later this month.
We are excited to announce that our first conference for over two years will be held in Glasgow.
Topic: 'Managing CLL in 2022- Treatment guidelines explained'
When:
Tuesday 18 October
Where:
Voco Grand Central, 99 Gordon Street, Glasgow, G1 3SF. The centre is within the
We are excited to announce that our first conference for over two years will be held in Glasgow.
Topic: 'Managing CLL in 2022- Treatment guidelines explained'
When:
Tuesday 18 October
Where:
Voco Grand Central, 99 Gordon Street, Glasgow, G1 3SF. The centre is within the
pkguk2
CLL Support Association
in
CLL Support
2 years ago
Breakthrough in laboratory production of red blood cells towards saving lives of those with Chronic Lymphocytic Leukaemia in the future
One of the triggers for starting treatment for CLL is haemoglobin dropping below 100. The most common use of donated blood is transfusions for those undergoing cancer treatment. Even targeted therapies for CLL like acalabrutinib or venetoclax have an impact on bone marrow production. While there's
One of the triggers for starting treatment for CLL is haemoglobin dropping below 100. The most common use of donated blood is transfusions for those undergoing cancer treatment. Even targeted therapies for CLL like acalabrutinib or venetoclax have an impact on bone marrow production. While there's
AussieNeil
Partner
in
CLL Support
2 years ago
Atypical CF -diagnosed in UK? Results back
After the better part of a year, I finally received my results for CF and PCD testing. The initial brush biopsy for PCD indicated no mucociliary clearance amongst other things. However, they regrew the cilia and decided this was caused by mucus trapping the cilia. I was told they had to retest the
After the better part of a year, I finally received my results for CF and PCD testing. The initial brush biopsy for PCD indicated no mucociliary clearance amongst other things. However, they regrew the cilia and decided this was caused by mucus trapping the cilia. I was told they had to retest the
Person99
in
Lung Conditions Community Forum
2 years ago
Richter transformation of chronic lymphocytic leukaemia: a British Society for Haematology Good Practice Paper
Richter's - we all dread that word and try not to think about it but if the worst does happen then it's good to be well informed, preferably beforehand. This short paper from the British Society for Haematology was written by the leading CLL/Richter's doctors in the UK and sets out best practice for
Richter's - we all dread that word and try not to think about it but if the worst does happen then it's good to be well informed, preferably beforehand. This short paper from the British Society for Haematology was written by the leading CLL/Richter's doctors in the UK and sets out best practice for
Jm954
Administrator
in
CLL Support
2 years ago
pre fibrotic myelofibrosis
Hi all hope your well. Could anyone help me I had a BMB nad results say I have Pre Fibrotic myelofibrosis changes not sure what this means I have ET My Haemotoligist has suggested changing to Pegylated Interferon Has anyone had same diagnosis Is anyone on htis medication to and can tell
Hi all hope your well. Could anyone help me I had a BMB nad results say I have Pre Fibrotic myelofibrosis changes not sure what this means I have ET My Haemotoligist has suggested changing to Pegylated Interferon Has anyone had same diagnosis Is anyone on htis medication to and can tell
JeniMac
in
MPN Voice
2 years ago
PV and CML?
hi just diagnosed with PV JAK2+ve. I also have 1 type of my white cells slightly high. Could I have CML at the same time as PV. My hospital notes had CML?
hi just diagnosed with PV JAK2+ve. I also have 1 type of my white cells slightly high. Could I have CML at the same time as PV. My hospital notes had CML?
DougyW
in
MPN Voice
2 years ago
1st day on Ruxolitinib
The doctor took me off both Hydroxy and Anagrelide to start on new medication Ruxolitinib 20mg x2 daily. im a bit nervous about it, as I gained a lot of weight with the other medication and shielding, I don’t want to gain more. I know I have to lose some weight (I’ve done it before and I’ll do it again
The doctor took me off both Hydroxy and Anagrelide to start on new medication Ruxolitinib 20mg x2 daily. im a bit nervous about it, as I gained a lot of weight with the other medication and shielding, I don’t want to gain more. I know I have to lose some weight (I’ve done it before and I’ll do it again
wendycu
in
MPN Voice
2 years ago
essential thrombocytosis
I was diagnosed with et almost 4 years ago,had all the tests investigations etc,my platelets are now almost normal but apparently my hb is slightly low.i am very worried in case I have myelofibrosis which apparently is quite serious, can anyone help . Thanks.
I was diagnosed with et almost 4 years ago,had all the tests investigations etc,my platelets are now almost normal but apparently my hb is slightly low.i am very worried in case I have myelofibrosis which apparently is quite serious, can anyone help . Thanks.
glyndale
in
MPN Voice
2 years ago
Fibrosis, Grade 0 does not mean None
In another thread we've been discussing cellularity and fibrosis. I've found an unexpected (to me) result in my study. None is not an answer, we all need some fibers of fibrosis to support the marrow. The MPN condition starts when "some" becomes "more". "Structural fibrils constitute a physiological
In another thread we've been discussing cellularity and fibrosis. I've found an unexpected (to me) result in my study. None is not an answer, we all need some fibers of fibrosis to support the marrow. The MPN condition starts when "some" becomes "more". "Structural fibrils constitute a physiological
EPguy
in
MPN Voice
2 years ago
Does Covid boost ALS?
I'm W&W for 2 years. Abs lymphs (ALS) were 82K in July. Got 1st Evusheld 8/23. Got Covid 8/31 and started Paxlovid same day. 5 days later, 9/5, felt great then went on a vigorous 31 miles bike ride (probably too soon for such exercise). Then rebound on 9/12 with positive home test. Never got fever but
I'm W&W for 2 years. Abs lymphs (ALS) were 82K in July. Got 1st Evusheld 8/23. Got Covid 8/31 and started Paxlovid same day. 5 days later, 9/5, felt great then went on a vigorous 31 miles bike ride (probably too soon for such exercise). Then rebound on 9/12 with positive home test. Never got fever but
JDG45
in
CLL Support
2 years ago
Painful cutaneous nodules (neutrophilic dermatosis of the dorsal hands) in chronic neutrophilic leukaemia
- Worsens as
leukaemia
progresses. - Requires systemic chemotherapy.
- Worsens as
leukaemia
progresses. - Requires systemic chemotherapy.
Shell567
Sweet's Syndrome UK
in
Sweet's Syndrome UK
2 years ago
A brief update post Venetoclax+Rituximab - treatment number 4
Many of you have been kind enough to ask about my current situation. For those not aware, briefly - I relapsed within days of stopping Ibrutinib (due to funding and end of the trial) which I had received as part of the FLAIR trial. I had 7cm nodes under my arms which had come up almost overnight
Many of you have been kind enough to ask about my current situation. For those not aware, briefly - I relapsed within days of stopping Ibrutinib (due to funding and end of the trial) which I had received as part of the FLAIR trial. I had 7cm nodes under my arms which had come up almost overnight
Jm954
Administrator
in
CLL Support
2 years ago
ET progression to MF - anxiety issues
My ET is now progressing to Post ET Myelofibrisis. My hemo has recommended I start on Ruxolitinib & also to be considered for a stem cell transplant. I know some of you have been in the same situation. Am I correct in thinking MF is life limiting? Also how have any of you coped on Rux? I feel very
My ET is now progressing to Post ET Myelofibrisis. My hemo has recommended I start on Ruxolitinib & also to be considered for a stem cell transplant. I know some of you have been in the same situation. Am I correct in thinking MF is life limiting? Also how have any of you coped on Rux? I feel very
SRH55
in
MPN Voice
2 years ago
See a Dermatologist On a Regular Basis, if possible.
Once I was diagnosed with cll 8 years ago (in my mid-60’s), I was advised to see a dermatologist on a regular basis. I was lucky that my family physician’s partner is a dermatologist, so finding a dermatologist was easy. At least in Ontario, it is getting more and more difficult to find a dermatologist
Once I was diagnosed with cll 8 years ago (in my mid-60’s), I was advised to see a dermatologist on a regular basis. I was lucky that my family physician’s partner is a dermatologist, so finding a dermatologist was easy. At least in Ontario, it is getting more and more difficult to find a dermatologist
Vizilo
in
CLL Support
2 years ago
Covid treatments in the UK - clinical guide
treatments-independent-advisory-group-report/defining-the-highest-risk-clinical-subgroups-upon-community-infection-with-sars-cov-2-when-considering-the-use-of-neutralising-monoclonal-antibodies and include "all people who... are diagnosed with: ...chronic B-cell lymphoproliferative disorders (chronic lymphocytic
leukaemia
treatments-independent-advisory-group-report/defining-the-highest-risk-clinical-subgroups-upon-community-infection-with-sars-cov-2-when-considering-the-use-of-neutralising-monoclonal-antibodies and include "all people who... are diagnosed with: ...chronic B-cell lymphoproliferative disorders (chronic lymphocytic
leukaemia
bennevisplace
in
CLL Support
2 years ago
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