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Hi
Hi my partner has been diagnosed with TPLL which is a rare form of
leukaemia
, he is due to start chemo tomorrow and is really worried. I was wondering if anyone else here has been diagnosed with this and what their experience is. Thank you x
Hi my partner has been diagnosed with TPLL which is a rare form of
leukaemia
, he is due to start chemo tomorrow and is really worried. I was wondering if anyone else here has been diagnosed with this and what their experience is. Thank you x
Hiker_chick
in
Leukaemia Support
3 years ago
CLLAN/ALAN´s joint webinar on COVID-19 vaccination and immune challenges for leukemia - 11 Feb 2021
Be aware that it's quite long at 90 minutes but you can skip the acute
leukaemia
parts. https://www.youtube.com/watch?v=1TQjSqyikt0 Jackie
Be aware that it's quite long at 90 minutes but you can skip the acute
leukaemia
parts. https://www.youtube.com/watch?v=1TQjSqyikt0 Jackie
Jm954
Administrator
in
CLL Support
3 years ago
NPlate and hair thinning
Hi from a very wet and windy Dartmoor. I’m on nPlate and have been for the past two months, platelets are stable at 123 which is good. Have had a few side effects, joint pain, headaches but am also noticing my hair is thinning, even my hairdresser said I had lost a noticeable amount. Has anyone else
Hi from a very wet and windy Dartmoor. I’m on nPlate and have been for the past two months, platelets are stable at 123 which is good. Have had a few side effects, joint pain, headaches but am also noticing my hair is thinning, even my hairdresser said I had lost a noticeable amount. Has anyone else
DevonMaid1
in
ITP Support Association
3 years ago
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COVID-19 vaccine and CLL patients: An analysis of the first published results
https://www.leukaemiacare.org.uk/support-and-information/latest-from-
leukaemia
-care/blog/covid-19-and-cll-patients-an-analysis-of-the-first-published-results/
https://www.leukaemiacare.org.uk/support-and-information/latest-from-
leukaemia
-care/blog/covid-19-and-cll-patients-an-analysis-of-the-first-published-results/
NicoleLeukaemiaCare
in
Leukaemia Support
3 years ago
No Antibodies shown after taking the Moderna Vaccine
I am new to CLL only a year on W&W. My Lymphs are #10.26 and % is 69.7. WBC is 14.73. I had the Moderna vaccine in Feb and March. Just had an antibody test and the result was negative - no antibodies. To say the least I am heartbroken and disappointed. Does anyone have any ideas as to what I should
I am new to CLL only a year on W&W. My Lymphs are #10.26 and % is 69.7. WBC is 14.73. I had the Moderna vaccine in Feb and March. Just had an antibody test and the result was negative - no antibodies. To say the least I am heartbroken and disappointed. Does anyone have any ideas as to what I should
CBME
in
CLL Support
3 years ago
Radiotherapy for sarcomatoid sccs related to ruxolitinib: would welcome dosage experiences
Hi. Thank you in advance for your time. I’m having 50 grays of radiation split into 20 doses ( 5 days a week) to prevent further recurrences of SCCs. on my face. Removed surgically. . Nasty stuff , and face is already sore and itchy after 6 treatments. Can’t find any evidence base for that level of
Hi. Thank you in advance for your time. I’m having 50 grays of radiation split into 20 doses ( 5 days a week) to prevent further recurrences of SCCs. on my face. Removed surgically. . Nasty stuff , and face is already sore and itchy after 6 treatments. Can’t find any evidence base for that level of
Rachelthepotter
in
MPN Voice
3 years ago
It’s official Study shows T cells are activated against Covid after vaccination
Just heard on the Irish Radio from Professor Luke O’Neill, a super immunologist in Trinity College Dublin, results of a study on Leukemia patients show T Cells show response to the vaccine. Sorry I can’t remember the name of the study he mentioned . Great news he thought. It’s nature.com and Eureka
Just heard on the Irish Radio from Professor Luke O’Neill, a super immunologist in Trinity College Dublin, results of a study on Leukemia patients show T Cells show response to the vaccine. Sorry I can’t remember the name of the study he mentioned . Great news he thought. It’s nature.com and Eureka
Hidden
in
CLL Support
3 years ago
Supporting you to make decisions around clinical trials - a free online webinar - Friday 18th June at 3pm
Clinical trials are an important part of the treatment of blood cancers, and for some people can offer access to new treatments that aren’t available routinely. Some people may be invited to participate in a clinical trial by their healthcare team, and some may like to raise the question of suitability
Clinical trials are an important part of the treatment of blood cancers, and for some people can offer access to new treatments that aren’t available routinely. Some people may be invited to participate in a clinical trial by their healthcare team, and some may like to raise the question of suitability
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
Has anyone that’s prone to depression taken PEG INF / Pegasys?
I guess I’m clutching at straws here but I’m not keen and will probably decide to not start Ruxolitinib at this time, so that just leaves Peg. I will post an update as to what’s going on since my last haem apt which was a couple of days ago but as always the monthly appointments tend to upset me so
I guess I’m clutching at straws here but I’m not keen and will probably decide to not start Ruxolitinib at this time, so that just leaves Peg. I will post an update as to what’s going on since my last haem apt which was a couple of days ago but as always the monthly appointments tend to upset me so
Magentas
in
MPN Voice
3 years ago
First results of a head-to-head trial of acalabrutinib versus ibrutinib in previously treated chronic lymphocytic leukemia.
Background: Increased selectivity of the Bruton tyrosine kinase inhibitor (BTKi) acalabrutinib (Aca) vs ibrutinib (Ib) may improve tolerability. We conducted an open-label, randomized, noninferiority, phase 3 trial to compare Aca vs Ib in patients (pts) with chronic lymphocytic leukemia (CLL). Methods
Background: Increased selectivity of the Bruton tyrosine kinase inhibitor (BTKi) acalabrutinib (Aca) vs ibrutinib (Ib) may improve tolerability. We conducted an open-label, randomized, noninferiority, phase 3 trial to compare Aca vs Ib in patients (pts) with chronic lymphocytic leukemia (CLL). Methods
Jm954
Administrator
in
CLL Support
3 years ago
CLL: from molecular pathogenesis to novel therapeutic strategies
September 2020 An interesting paper "CLL is a well-defined lymphoid neoplasm with very heterogeneous biological and clinical behavior. The last decade has been remarkably fruitful in novel findings elucidating multiple aspects of the pathogenesis of the disease. These include mechanisms of genetic susceptibility
September 2020 An interesting paper "CLL is a well-defined lymphoid neoplasm with very heterogeneous biological and clinical behavior. The last decade has been remarkably fruitful in novel findings elucidating multiple aspects of the pathogenesis of the disease. These include mechanisms of genetic susceptibility
Jm954
Administrator
in
CLL Support
3 years ago
Should I get a COVID-19 antibody test?
If you have any questions regarding the article, there is a handy form at the bottom which goes directly to our advocacy team - they'll get back to you asap with an answer https://www.leukaemiacare.org.uk/support-and-information/latest-from-
leukaemia
-care/blog/should-i-get-a-covid-19-antibody-test/
If you have any questions regarding the article, there is a handy form at the bottom which goes directly to our advocacy team - they'll get back to you asap with an answer https://www.leukaemiacare.org.uk/support-and-information/latest-from-
leukaemia
-care/blog/should-i-get-a-covid-19-antibody-test/
NicoleLeukaemiaCare
in
Leukaemia Support
3 years ago
News - Acalabrutinib approved for Restricted use in Scotland
Following an abbreviated and full submissions, the Scottish Medicines Consortium has approved Acalabrutinib for CLL with the following restrictions:
[i]*for the treatment of adult patients with previously untreated CLL without a del(17p) or TP53 mutation and who are [/i]
[i][u]ineligible[/
Following an abbreviated and full submissions, the Scottish Medicines Consortium has approved Acalabrutinib for CLL with the following restrictions:
[i]*for the treatment of adult patients with previously untreated CLL without a del(17p) or TP53 mutation and who are [/i]
[i][u]ineligible[/
Jm954
Administrator
in
CLL Support
3 years ago
Doctor wants to start Venetoclax today but recent blood work shows evidence of AIHA but Doctor still says start Ven
shouldn't AIHA be treated first? hemoglobin dropping weekly down from 14.7 2 months ago now 10.7 Haptoglobin less than 31 LDH almost 700 Doctor says still start Venclexta tomorrow but why not hold off until AIHA is controlled with steroids or Rituxan? I think the Rituxan will put him in control of
shouldn't AIHA be treated first? hemoglobin dropping weekly down from 14.7 2 months ago now 10.7 Haptoglobin less than 31 LDH almost 700 Doctor says still start Venclexta tomorrow but why not hold off until AIHA is controlled with steroids or Rituxan? I think the Rituxan will put him in control of
Palmetto
in
CLL Support
3 years ago
Webinar for blood cancer patients - 3.30pm 30th March - Next steps with shielding and vaccination for COVID-19
Professor Fegan will focus on chronic
leukaemia
Dr Tobias Menne, Newcastle University and Consultant Haematologist Newcastle Hospitals. Dr Menne will focus on acute
leukaemia
You can register here: https://us02web.zoom.us/webinar/register/WN_rp5koCMlSOWgyNYdpoA8wQ
Professor Fegan will focus on chronic
leukaemia
Dr Tobias Menne, Newcastle University and Consultant Haematologist Newcastle Hospitals. Dr Menne will focus on acute
leukaemia
You can register here: https://us02web.zoom.us/webinar/register/WN_rp5koCMlSOWgyNYdpoA8wQ
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
Pre-fibrotic MF
So I finally seen my Hemo, and the results show I've got Pre-fibrotic MF. Im JAK2 positive. So he would like to put me on ruxolitinib on my next visit. Approval is needed due to my age? I'm 36. My current symptoms are fevers, sweats, burning feet, blurred vision, no appetite, underweight sitting at 47kg
So I finally seen my Hemo, and the results show I've got Pre-fibrotic MF. Im JAK2 positive. So he would like to put me on ruxolitinib on my next visit. Approval is needed due to my age? I'm 36. My current symptoms are fevers, sweats, burning feet, blurred vision, no appetite, underweight sitting at 47kg
Kriddle01
in
MPN Voice
3 years ago
Antibody test
Received the NHS antibody test today. Just done the finger prick blood test and now have to wait ten to 15 minutes for the test results. The accompanying letter states that the test cannot be 100% accurate on an individual basis so if the lines appear on the test it does not mean that you have antibodies
Received the NHS antibody test today. Just done the finger prick blood test and now have to wait ten to 15 minutes for the test results. The accompanying letter states that the test cannot be 100% accurate on an individual basis so if the lines appear on the test it does not mean that you have antibodies
jillydabrat
in
MPN Voice
3 years ago
A day of surprises
Hi all Yesterday I had the first face to face consultation since the pandemic. I must say I was wary of the reasons for this but went along anyway. The consultant reported that my blood tests results were unchanged and stable and the pegasys had reduced my spleen size by 0.7cm. He said that I am quite
Hi all Yesterday I had the first face to face consultation since the pandemic. I must say I was wary of the reasons for this but went along anyway. The consultant reported that my blood tests results were unchanged and stable and the pegasys had reduced my spleen size by 0.7cm. He said that I am quite
ConniesDad
in
MPN Voice
3 years ago
CLL Research: Phase 2 CAPTIVATE Study Suggests Role for Fixed-Duration Treatment of CLL/SLL
https://cllpharmacist.com/cll-research-phase-2-captivate-study-suggests-role-for-fixed-duration-treatment-of-cll-sll/ The data in the uMRD cohort of this trial suggest that fixed-duration therapy is feasible in patients who achieve undetectable MRD (uMRD) status. The selection of durations for these
https://cllpharmacist.com/cll-research-phase-2-captivate-study-suggests-role-for-fixed-duration-treatment-of-cll-sll/ The data in the uMRD cohort of this trial suggest that fixed-duration therapy is feasible in patients who achieve undetectable MRD (uMRD) status. The selection of durations for these
WinJ3
in
CLL Support
3 years ago
Research to investigate how patients with MPN and also CML respond to vaccination against Covid-19
Researchers at Guy's and St Thomas' NHS Foundation Trust are carrying out research to investigate how patients with MPN and also CML respond to vaccination against Covid-19. They would like to recruit patients with a known MPN – who have either not yet received a second dose OR are less than 6 weeks
Researchers at Guy's and St Thomas' NHS Foundation Trust are carrying out research to investigate how patients with MPN and also CML respond to vaccination against Covid-19. They would like to recruit patients with a known MPN – who have either not yet received a second dose OR are less than 6 weeks
Mazcd
MPNVoice
in
MPN Voice
3 years ago
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