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B-PLL: Ibrutrinib Monotherapy or Obinutuzumab (aka Gazyva) & Venetoclax Combination as first-line treatment for transformed CLL
Hi Everyone, I'm new to this group. My Dad has CLL with a B-PLL transformation in his lymph nodes. He has good genetic markers (TP53 unmutated, 17P undeleted) but is IGHV unmutated. We have two CLL experts who propose different treatment plans for first-line therapy: 1) Monotherapy Ibrutinib or Acalabrutinib
Hi Everyone, I'm new to this group. My Dad has CLL with a B-PLL transformation in his lymph nodes. He has good genetic markers (TP53 unmutated, 17P undeleted) but is IGHV unmutated. We have two CLL experts who propose different treatment plans for first-line therapy: 1) Monotherapy Ibrutinib or Acalabrutinib
Phs2385
in
CLL Support
4 years ago
Covid Crisis and Volunteering.
NewsHealth NHS volunteering: how to volunteer to help during the UK coronavirus lockdown, and roles available The government initially appealed for 250,000 to help the health service out - but more than double that number signed up By Benjamin Butterworth Thursday, 26th March 2020, 2:44 pm Updated
NewsHealth NHS volunteering: how to volunteer to help during the UK coronavirus lockdown, and roles available The government initially appealed for 250,000 to help the health service out - but more than double that number signed up By Benjamin Butterworth Thursday, 26th March 2020, 2:44 pm Updated
dembonesDAMNBONES
in
Lung Conditions Community Forum
4 years ago
Transfusions
I have to go for five-weekly transfusions. (I have Myelofibrosis and am on Ruxo and Epo injections) I am extremely worried about going to the hospital. Two weeks ago none of the medical staff was wearing protective clothing, and as I am there for at least 5 hours the possibility of catching Coronavirus
I have to go for five-weekly transfusions. (I have Myelofibrosis and am on Ruxo and Epo injections) I am extremely worried about going to the hospital. Two weeks ago none of the medical staff was wearing protective clothing, and as I am there for at least 5 hours the possibility of catching Coronavirus
skipperL
in
MPN Voice
4 years ago
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Confused
I have hypersensitivity pneumonitis with fibrosis and live alone, I haven't received a letter but am I a high risk person. I would like to know. I live on my own any way so I don't have baby contacts except possibly shopping.
I have hypersensitivity pneumonitis with fibrosis and live alone, I haven't received a letter but am I a high risk person. I would like to know. I live on my own any way so I don't have baby contacts except possibly shopping.
Almaz65
in
Lung Conditions Community Forum
4 years ago
MPN + Neurofibromatosis Type 1 (RASopathy)?
Have been wondering how many others on the MPN forum have been diagnosed with both a MPN and Neurofibromatosis Type 1 or another RASopathy? Specifically wondering about what you have experienced or learned about the impact of having both of these conditions. A few factoids: the JAK2 mutation and the
Have been wondering how many others on the MPN forum have been diagnosed with both a MPN and Neurofibromatosis Type 1 or another RASopathy? Specifically wondering about what you have experienced or learned about the impact of having both of these conditions. A few factoids: the JAK2 mutation and the
hunter5582
in
MPN Voice
4 years ago
CLL - Extremely Vulnerable clarified
People with specific cancers: o people with cancer who are undergoing active chemotherapy o people with lung cancer who are undergoing radical radiotherapy o people with cancers of the blood or bone marrow such as
leukaemia
, myelodysplastic syndromes, lymphoma or myeloma who are at any stage of treatment
People with specific cancers: o people with cancer who are undergoing active chemotherapy o people with lung cancer who are undergoing radical radiotherapy o people with cancers of the blood or bone marrow such as
leukaemia
, myelodysplastic syndromes, lymphoma or myeloma who are at any stage of treatment
bennevisplace
in
CLL Support
4 years ago
ET Hydroxurea and Covid 19
Hi Everyone, wishing you all well at this incredibly sad time. Covid19 is so scary but I also wonder if taking low dose Hydroxurea (I take 2 per day, so1000mg) for Essential Thrombocytosis (JAK2 mutation) makes you more susceptible to a virus like Covid19. All my other markers are fine eg white cells
Hi Everyone, wishing you all well at this incredibly sad time. Covid19 is so scary but I also wonder if taking low dose Hydroxurea (I take 2 per day, so1000mg) for Essential Thrombocytosis (JAK2 mutation) makes you more susceptible to a virus like Covid19. All my other markers are fine eg white cells
Elzbietta
in
MPN Voice
4 years ago
CLL Society's Expert Access Online Free 2nd Opinion/ No office visit involved
These days, when home is safer than the CLL doctor's office, an online HIPPA-compliant Expert 2nd Opinion from CLL Society's Access Program is just what you need! Those with a CLL expert as part of their team, live longer than those without this advantage. Apply now! https://cllsociety.org/cll-society-expert-access
These days, when home is safer than the CLL doctor's office, an online HIPPA-compliant Expert 2nd Opinion from CLL Society's Access Program is just what you need! Those with a CLL expert as part of their team, live longer than those without this advantage. Apply now! https://cllsociety.org/cll-society-expert-access
bkoffman
CLL CURE Hero
in
CLL Support
4 years ago
CORONA VIRUS
Husband is JAX-2-V617 mutation positive MPN consistent with Polycythaemia Vera Ruxolitinib 15grms twice a day. Is he classed in the current situation as vulnerable.
Husband is JAX-2-V617 mutation positive MPN consistent with Polycythaemia Vera Ruxolitinib 15grms twice a day. Is he classed in the current situation as vulnerable.
waddles22
in
MPN Voice
4 years ago
Video Interview: Acute lymphoblastic leukaemia (ALL) research updates from ASH 2019. How genetic information aids diagnosis and treatment
Whilst there, the team spoke to a number of experts, in these first two videos we hear from Professor Anthony Moorman on how genetic information about the
leukaemia
cell is used in the diagnosis and treatment of acute
leukaemia
, along with what research was presented on the topic of genetics and acute
Whilst there, the team spoke to a number of experts, in these first two videos we hear from Professor Anthony Moorman on how genetic information about the
leukaemia
cell is used in the diagnosis and treatment of acute
leukaemia
, along with what research was presented on the topic of genetics and acute
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
An Investigation into the Quality of Life and Dietary Behaviours of Young Adult Cancer Survivors
When I was fifteen years old I was diagnosed with Acute Lymphoblastic
Leukaemia
and received three and half years of chemotherapy treatment. I will always be incredibly grateful for the amazing care and support that I received and will remain inspired by the many people I met along the way.
When I was fifteen years old I was diagnosed with Acute Lymphoblastic
Leukaemia
and received three and half years of chemotherapy treatment. I will always be incredibly grateful for the amazing care and support that I received and will remain inspired by the many people I met along the way.
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
War on blood Car -t cells
Did any one watch BBC war on blood and see how incredible brave the two unsuccessful patient faced their pain and subsequent deaths from
Leukaemia
. Certainly made me appreciate how fortunate my ET never developed into AML. So get on with life now. town Crier Et for 30 years.
Did any one watch BBC war on blood and see how incredible brave the two unsuccessful patient faced their pain and subsequent deaths from
Leukaemia
. Certainly made me appreciate how fortunate my ET never developed into AML. So get on with life now. town Crier Et for 30 years.
catkinspolymer
in
MPN Voice
4 years ago
ALL of us with CLL are immune compromised, so what does it mean to be immunocompromised? Why does this increase our risk of coronavirus?
Vincent, Research Fellow; Rheumatology Research Group, Centre for Inflammatory Diseases: https://theconversation.com/what-does-it-mean-to-be-immunocompromised-and-why-does-this-increase-your-risk-of-coronavirus-135200 Tips from Australia's
Leukaemia
Foundation on preventing infection and illness https
Vincent, Research Fellow; Rheumatology Research Group, Centre for Inflammatory Diseases: https://theconversation.com/what-does-it-mean-to-be-immunocompromised-and-why-does-this-increase-your-risk-of-coronavirus-135200 Tips from Australia's
Leukaemia
Foundation on preventing infection and illness https
AussieNeil
Partner
in
CLL Support
4 years ago
UK CLL Forum Advice for CLL Patients and a survey for the UK patients - Please complete the survey if you can.
They have partnered with CLL Support (who moderate this site) and
Leukaemia
Care to promote a survey and provide information support.
They have partnered with CLL Support (who moderate this site) and
Leukaemia
Care to promote a survey and provide information support.
Jm954
Administrator
in
CLL Support
4 years ago
Richter syndrome. Ganglion below the neck
Hello friends A month ago I wrote, because a small node had grown out from under my jaw. I did an ultrasound and they found a 4X3 millimeter node. Do not call my hematologist because I have a consultation in two weeks. I took antibiotics and I have not left. I had fungus in my mouth that I'm treating
Hello friends A month ago I wrote, because a small node had grown out from under my jaw. I did an ultrasound and they found a 4X3 millimeter node. Do not call my hematologist because I have a consultation in two weeks. I took antibiotics and I have not left. I had fungus in my mouth that I'm treating
Priss69
in
CLL Support
4 years ago
Are these early symptoms of cll?
The problem is that now I have symptoms that could be early indications of a cll or indolent t-cell
Leukaemia
which are low grade fever around 99 with now apparent reason, sometimes swollen and tender to touch nodes under my jaw, base of throat and waistline (can it be a lymph node there?
The problem is that now I have symptoms that could be early indications of a cll or indolent t-cell
Leukaemia
which are low grade fever around 99 with now apparent reason, sometimes swollen and tender to touch nodes under my jaw, base of throat and waistline (can it be a lymph node there?
Alexpan2004
in
CLL Support
4 years ago
The impact of dose modification and temporary interruption of ibrutinib on outcomes of CLL patients in routine clinical practice
This paper in Cancer Medicine (18/03/2020) reports on a retrospective study of 209 consecutive CLL patients treated with Ibrutinib outside the context of a clinical trial at the Mayo Clinic. Results from the study show that among CLL patients treated outside the context of a clinical trial, approximately
This paper in Cancer Medicine (18/03/2020) reports on a retrospective study of 209 consecutive CLL patients treated with Ibrutinib outside the context of a clinical trial at the Mayo Clinic. Results from the study show that among CLL patients treated outside the context of a clinical trial, approximately
Jm954
Administrator
in
CLL Support
4 years ago
ACCEPTED INTO LOXO-305 CLINICAL TRIAL
LOXO-305 TRIAL UPDATE TWO MONTHS IN Hey everyone, I started this trial on 2/02/2020 at Memorial Sloan Kettering in NJ. After being diagnosed in 2009 with CLL, I have been through 3 prior treatments, FCR, Ibrutinib and Venclaxta. I had a 5 1/2 year remission with FCR, 3 with Ibrutinib,and about 18
LOXO-305 TRIAL UPDATE TWO MONTHS IN Hey everyone, I started this trial on 2/02/2020 at Memorial Sloan Kettering in NJ. After being diagnosed in 2009 with CLL, I have been through 3 prior treatments, FCR, Ibrutinib and Venclaxta. I had a 5 1/2 year remission with FCR, 3 with Ibrutinib,and about 18
steve5441
in
CLL Support
4 years ago
Childhood ALL video update by Dr Sara Ghorashian from the 2019 American Society of Hematology (ASH)
In this video interview Dr Sara Ghorashian describes the remaining challenges in the treatment of childhood acute lymphoblastic
leukaemia
(ALL), and how these could be addressed. https://youtu.be/o4R9V5OeQoU
In this video interview Dr Sara Ghorashian describes the remaining challenges in the treatment of childhood acute lymphoblastic
leukaemia
(ALL), and how these could be addressed. https://youtu.be/o4R9V5OeQoU
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
Slowly deteriorating
Horrendous Christmas, lots of stress, mother in law diagnosed with
leukaemia
, husband and son really ill with chest infections, just one thing after another. Started to feel awful, vertigo, memory loss, speech loss, peripheral neuropathy, spider crawling sensations on my face, extreme fatigue.
Horrendous Christmas, lots of stress, mother in law diagnosed with
leukaemia
, husband and son really ill with chest infections, just one thing after another. Started to feel awful, vertigo, memory loss, speech loss, peripheral neuropathy, spider crawling sensations on my face, extreme fatigue.
ExploringWonderland
in
Pernicious Anaemia Society
4 years ago
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