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Proximal onycholysis
Just wondering if anyone taking hydroxyurea or ruxolitinib has had any nail problems. Two of my fingernails (thumb and ring finger) started with bruises under the cuticles and then white areas around the base of the nail which have actually started to peel off. I went to a dermatologist this morning
Just wondering if anyone taking hydroxyurea or ruxolitinib has had any nail problems. Two of my fingernails (thumb and ring finger) started with bruises under the cuticles and then white areas around the base of the nail which have actually started to peel off. I went to a dermatologist this morning
Buggerbear
in
MPN Voice
3 years ago
No Antibodies after Vaccine
Just got my results back for Covid Antibodies after Vaccination. It was Negative with a reported level of less than 0.4(U/mL). I took two doses of Pfizer, 8 weeks apart. I've been on Ibrutinib for CLL for 7 months now, and the first vaccine dose was 3 months after starting treatment. Really peed off
Just got my results back for Covid Antibodies after Vaccination. It was Negative with a reported level of less than 0.4(U/mL). I took two doses of Pfizer, 8 weeks apart. I've been on Ibrutinib for CLL for 7 months now, and the first vaccine dose was 3 months after starting treatment. Really peed off
MovingForward4423
in
CLL Support
3 years ago
AbbVie Pharm--positive phase 3 for CLL!
Hey, all, see this article about AbbVie pharma! AbbVie Sees Continued Positive Results for Leukemia Treatment 7:05 am ET June 11, 2021 (Dow Jones) Print By Chris Wack AbbVie said it saw continued positive results from a four-year follow-up analysis of its Phase 3 CLL14 trial. The pharmaceutical company
Hey, all, see this article about AbbVie pharma! AbbVie Sees Continued Positive Results for Leukemia Treatment 7:05 am ET June 11, 2021 (Dow Jones) Print By Chris Wack AbbVie said it saw continued positive results from a four-year follow-up analysis of its Phase 3 CLL14 trial. The pharmaceutical company
Vlaminck
in
CLL Support
3 years ago
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[CASE-STUDY] Myocarditis Concurrent with Sweet Syndrome: A Presentation of Acute Myeloid Leukemia.
In this case, the Sweet's syndrome (SS) developed secondary to
acute
myeloid
leukaemia
(AML). In AML, the heart muscle can be infiltrated by malignant leukaemia cells, but SS can also cause heart problems, including myocarditis (inflammation of the heart muscle).
In this case, the Sweet's syndrome (SS) developed secondary to
acute
myeloid
leukaemia
(AML). In AML, the heart muscle can be infiltrated by malignant leukaemia cells, but SS can also cause heart problems, including myocarditis (inflammation of the heart muscle).
Shell567
Sweet's Syndrome UK
in
Sweet's Syndrome UK
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
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
Screening and monitoring of the BTK C481S mutation in a real-world cohort of patients with relapsed/refractory chronic lymphocytic leukaemia
On line abstract report 21 May 2021 The Bruton's tyrosine kinase (BTK) inhibitor ibrutinib has revolutionised the therapeutic landscape of chronic lymphocytic leukaemia (CLL). Acquired mutations emerging at position C481 in the BTK tyrosine kinase domain are the predominant genetic alterations associated
On line abstract report 21 May 2021 The Bruton's tyrosine kinase (BTK) inhibitor ibrutinib has revolutionised the therapeutic landscape of chronic lymphocytic leukaemia (CLL). Acquired mutations emerging at position C481 in the BTK tyrosine kinase domain are the predominant genetic alterations associated
Jm954
Administrator
in
CLL 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 3.30pm, Tuesday 6th April - Acute lymphoblastic leukaemia (ALL) treatment update
Please join us for the 3rd in the series of
acute
leukaemia
treatment updates. This webinar will update on how ALL is treated today and what is on the horizon: how is a therapy chosen, how is prognosis determined and what level of involvement should patients expect in their care decisions.
Please join us for the 3rd in the series of
acute
leukaemia
treatment updates. This webinar will update on how ALL is treated today and what is on the horizon: how is a therapy chosen, how is prognosis determined and what level of involvement should patients expect in their care decisions.
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
Webinar 3.30pm, Thursday 11th March - Acute myeloid leukaemia (AML) treatment update
Please join us for our 2nd webinar in the
acute
leukaemia
treatment updates series. This webinar will update on how AML is treated today and what is on the horizon: how is a therapy chosen, how is prognosis determined and what level of involvement should patients expect in their care decisions.
Please join us for our 2nd webinar in the
acute
leukaemia
treatment updates series. This webinar will update on how AML is treated today and what is on the horizon: how is a therapy chosen, how is prognosis determined and what level of involvement should patients expect in their care decisions.
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
Webinar 9.30am, Wednesday 3rd March - Acute promyelocytic leukaemia (APL) treatment update
Please join us for the 1st in our series of free treatment updates in
acute
leukaemia
. This webinar will update on how APL is treated today and what is on the horizon: how is a therapy chosen, how is prognosis determined and what level of involvement should patients expect in their care decisions.
Please join us for the 1st in our series of free treatment updates in
acute
leukaemia
. This webinar will update on how APL is treated today and what is on the horizon: how is a therapy chosen, how is prognosis determined and what level of involvement should patients expect in their care decisions.
HAIRBEAR_UK
in
Leukaemia Support
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
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