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No more mutation test?
Hey guys! I just went to my hematologist and he said that only 50 to 60 percent of people will test positive on Jak2 mutation for ET, then here in our country the other 2 mutations are expensive each test is 300USD and he suggest that I should prioritize my bone marrow biopsy. Also should i choose being
Hey guys! I just went to my hematologist and he said that only 50 to 60 percent of people will test positive on Jak2 mutation for ET, then here in our country the other 2 mutations are expensive each test is 300USD and he suggest that I should prioritize my bone marrow biopsy. Also should i choose being
Anonymous022719-
in
MPN Voice
3 years ago
Extremely worried about the value of IL-6 and IL-8 explored, what should I do?
I'm 34 years old only, and have been in MF3 since 2017 diagnosed. Very bad state I was megalosplenia when I diagnosed. Now I take Ruxolitinib 7.5mg/bid /day and interferon per several days. The hemogram was controlled lower than normal, especially platelet. I have taken Ruxolitinib for 3 years, obviously
I'm 34 years old only, and have been in MF3 since 2017 diagnosed. Very bad state I was megalosplenia when I diagnosed. Now I take Ruxolitinib 7.5mg/bid /day and interferon per several days. The hemogram was controlled lower than normal, especially platelet. I have taken Ruxolitinib for 3 years, obviously
merlisa
in
MPN Voice
3 years ago
Richter transformation of CLL: a British Society for Haematology Good Practice Paper
This best practice paper, written by some of the best and most respected CLL experts in the UK and published on 4th October 2021 following a review of all the evidence and clinical trials available, should form the basis for the treatment of Richter's Syndrome in hospitals in the UK. Details here:
This best practice paper, written by some of the best and most respected CLL experts in the UK and published on 4th October 2021 following a review of all the evidence and clinical trials available, should form the basis for the treatment of Richter's Syndrome in hospitals in the UK. Details here:
Jm954
Administrator
in
CLL Support
3 years ago
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Join
Leukaemia Care webinar - COVID-19 and leukaemia; what more do we know?
Please join us on
Tuesday 28th September at 4.30pm
to discuss where we are today and updates from clinical experts and trials data looking at immunisation strategies for the immune compromised..
You can register here:
:https://us02web.zoom.us/webinar/register/WN_ReHr0TxjRoOU3tcVmruR8w
Please join us on
Tuesday 28th September at 4.30pm
to discuss where we are today and updates from clinical experts and trials data looking at immunisation strategies for the immune compromised..
You can register here:
:https://us02web.zoom.us/webinar/register/WN_ReHr0TxjRoOU3tcVmruR8w
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
Lymph node biopsy results
Hello everyone, just a quick update- my husband finally went for results of lymph node biopsy and thank goodness no mutations. We’re now trying to decide whether to have ibrutinab or ventoclax treatment. Best wishes to everyone Lesley 😊
Hello everyone, just a quick update- my husband finally went for results of lymph node biopsy and thank goodness no mutations. We’re now trying to decide whether to have ibrutinab or ventoclax treatment. Best wishes to everyone Lesley 😊
Lesley3
in
CLL Support
3 years ago
Webinar tomorrow - Leukaemia Care & ACAS – I have leukaemia: what are my rights at work?
Join us at 3:30pm tomorrow the 15th of September via Zoom or Facebook
We've teamed up with the Advisory, Conciliation and Arbitration Service (ACAS) https://www.acas.org.uk/disability-at-work this is a timely webinar that you may find of help to gain understanding and access to appropriate information
Join us at 3:30pm tomorrow the 15th of September via Zoom or Facebook
We've teamed up with the Advisory, Conciliation and Arbitration Service (ACAS) https://www.acas.org.uk/disability-at-work this is a timely webinar that you may find of help to gain understanding and access to appropriate information
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
Harvoni and CLL
Has anyone heard of the Hepatitis C medication Harvoni causing CLL? I was treated with it in 2015. I have CBC tests from 2014 and 2015 showing normal lymphocytes. The first elevated CBC panel I can find is 2016. I see my numbers still elevated in 2018. I was diagnosed in 2021. When I was I was told
Has anyone heard of the Hepatitis C medication Harvoni causing CLL? I was treated with it in 2015. I have CBC tests from 2014 and 2015 showing normal lymphocytes. The first elevated CBC panel I can find is 2016. I see my numbers still elevated in 2018. I was diagnosed in 2021. When I was I was told
Rando21
in
CLL Support
3 years ago
Progression to aml
I’ve had pv for 12 years. 3 months ago it progressed to acute myeloid leukaemia with a statistical prognosis of 6 months. As I am 73, I decided not to have chemotherapy. So far, physically I am ok, and the leukaemia is gradually impacting red cell and platelet counts, but I know this can speed up significantly
I’ve had pv for 12 years. 3 months ago it progressed to acute myeloid leukaemia with a statistical prognosis of 6 months. As I am 73, I decided not to have chemotherapy. So far, physically I am ok, and the leukaemia is gradually impacting red cell and platelet counts, but I know this can speed up significantly
Hidden
in
MPN Voice
3 years ago
BTK inhibitors for the treatment of CLL - the current state of play of 'brutinibs'
leukemia
/small
lymphocytic
leukemia
, recapping key insights from a scientific interchange & workshop[/i].’ https://www.onclive.com/view/updates-in-the-treatment-of-chronic-
lymphocytic
-
leukemia
-small-
lymphocytic
-
leukemia
(https://cdn.sanity.io/files/0vv8moc6/onclive/a65cf46363bb48caff2e3c28b510748ef0a539ba.pdf
leukemia
/small
lymphocytic
leukemia
, recapping key insights from a scientific interchange & workshop[/i].’ https://www.onclive.com/view/updates-in-the-treatment-of-chronic-
lymphocytic
-
leukemia
-small-
lymphocytic
-
leukemia
(https://cdn.sanity.io/files/0vv8moc6/onclive/a65cf46363bb48caff2e3c28b510748ef0a539ba.pdf
CLLerinOz
Administrator
in
CLL Support
3 years ago
SAVE the date and prepare to get involved only 5 days to go until World Leukaemia Day.
World Leukemia Day on 4th September is a yearly global campaign started by Leukemia Care in collaboration with the global patient advocacy networks: Acute Leukemia Advocates Network (ALAN) https://acuteleuk.org CLL Advocates Network (CLLAN) http://clladvocates.net CML Advocates Network (CMLAN)https:
World Leukemia Day on 4th September is a yearly global campaign started by Leukemia Care in collaboration with the global patient advocacy networks: Acute Leukemia Advocates Network (ALAN) https://acuteleuk.org CLL Advocates Network (CLLAN) http://clladvocates.net CML Advocates Network (CMLAN)https:
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
Wednesday 1st of September is WORLD CLL DAY when the global community comes together for Blood Cancer Awareness Month to raise awareness
Dear friends On Wednesday people affected by a diagnosis of CLL/SLL have the opportunity to come together around the globe with all groups involved in improving the clinical care, support and treatments of this blood cancer. World CLL Day will give those affected by a diagnosis of CLL/SLL a much
Dear friends On Wednesday people affected by a diagnosis of CLL/SLL have the opportunity to come together around the globe with all groups involved in improving the clinical care, support and treatments of this blood cancer. World CLL Day will give those affected by a diagnosis of CLL/SLL a much
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
Step Out For Spot Leukaemia during Blood Cancer Awareness Month
Join us if exercise is your thing. There's still time to sign up for this September's Step Out for Spot Leukaemia challenge! Walk or run a distance you set yourself and help raise money to support vulnerable leukaemia patients > https://stepout.givepenny.com Pull on your walking boots or lace up your
Join us if exercise is your thing. There's still time to sign up for this September's Step Out for Spot Leukaemia challenge! Walk or run a distance you set yourself and help raise money to support vulnerable leukaemia patients > https://stepout.givepenny.com Pull on your walking boots or lace up your
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
Share with your contacts how they can become a spotty super hero during September for Blood Cancer Awareness Month! Or have a go yourself.
We’re launching a spotty challenge on the 1st of September to get YOU involved with Spot Leukaemia. Be a spotty hero this Blood Cancer Awareness Month Please join our social media campaign https://www.leukaemiacare.org.uk/our-campaigns/spotleukaemia/spotty-challenges There are many prizes to be won
We’re launching a spotty challenge on the 1st of September to get YOU involved with Spot Leukaemia. Be a spotty hero this Blood Cancer Awareness Month Please join our social media campaign https://www.leukaemiacare.org.uk/our-campaigns/spotleukaemia/spotty-challenges There are many prizes to be won
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
Wednesday is the start of Blood Cancer Awareness Month - Help raise awareness of the signs and symptoms of leukaemia to save lives
We may be living in uncertain times, but there is one thing we are certain of: awareness of leukaemia needs to be dramatically improved Each year we reach millions of people with our spot leukaemia campaign but despite our efforts, awareness of blood cancer amongst the public, as well as in primary healthcare
We may be living in uncertain times, but there is one thing we are certain of: awareness of leukaemia needs to be dramatically improved Each year we reach millions of people with our spot leukaemia campaign but despite our efforts, awareness of blood cancer amongst the public, as well as in primary healthcare
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
T-cell /Cellular Immune Responses in Patients with CLL from the Pfizer-BioNTech COVID-19 Vaccine (BNT162b mRNA Covid19 Vaccine)
From Dr Tamar Tadmor, Head of the Israeli CLL study group at iwCLL. Patients with CLL suffer from varying degrees of immune deficiency, either due to their treatment or due to the the primary disease These include: 1. functional defects of B and T lymphocytes, NK cells, neutrophils and macrophages, 2
From Dr Tamar Tadmor, Head of the Israeli CLL study group at iwCLL. Patients with CLL suffer from varying degrees of immune deficiency, either due to their treatment or due to the the primary disease These include: 1. functional defects of B and T lymphocytes, NK cells, neutrophils and macrophages, 2
Jm954
Administrator
in
CLL Support
3 years ago
Clinical Trials explained
Most of us have heard conflicting comments about Clinical Trials, the good, the bad and the just plain ugly. But where can you find expert help and information before you sign on (often a 30 to 60 page document that few can understand - see https://www.fda.gov/patients/clinical-trials-what-patients-need-know
Most of us have heard conflicting comments about Clinical Trials, the good, the bad and the just plain ugly. But where can you find expert help and information before you sign on (often a 30 to 60 page document that few can understand - see https://www.fda.gov/patients/clinical-trials-what-patients-need-know
lankisterguy
Volunteer
in
CLL Support
3 years ago
Richter’s Transformation - updated
Hi everyone. I would like to update all the data that we all provide and summarize it. Last week I had a meeting with a CLL teacher and we discussed Ricther's behavior. That is what my doctor thinks but I am not satisfied. It is only his hypothesis and without any study. He thinks that as long as
Hi everyone. I would like to update all the data that we all provide and summarize it. Last week I had a meeting with a CLL teacher and we discussed Ricther's behavior. That is what my doctor thinks but I am not satisfied. It is only his hypothesis and without any study. He thinks that as long as
Priss69
in
CLL Support
3 years ago
Azacitidine side effect
I have MF and have been on Jakafi for over 2 years. During this time my spleen has enlarged to fill my stomach. It is not reducing, so my Haematologist recommended a chemo drug named Azacitidine. I have had the first cycle of 7 days and finished just over a week ago. However, I am experiencing Insomnia
I have MF and have been on Jakafi for over 2 years. During this time my spleen has enlarged to fill my stomach. It is not reducing, so my Haematologist recommended a chemo drug named Azacitidine. I have had the first cycle of 7 days and finished just over a week ago. However, I am experiencing Insomnia
billybrock
in
MPN Voice
3 years ago
Not for CLL but…
The FDA will decide on October 1st whether or not to approve a Gilead CAR-T treatment for refractory B-cell precursor Acute Lymphoblastic Leukemia. If nothing else, this would help to promote facilities capable of offering CAR-T and that can benefit some with CLL. I am also reposting this article that
The FDA will decide on October 1st whether or not to approve a Gilead CAR-T treatment for refractory B-cell precursor Acute Lymphoblastic Leukemia. If nothing else, this would help to promote facilities capable of offering CAR-T and that can benefit some with CLL. I am also reposting this article that
Luap001
in
CLL Support
3 years ago
Side effects of JAKAFI
After severe side effects of HU I was lucky enough to be prescribed JAKAFI.. I was so delighted I thought it was going to be the answer to my problems. Sadly no. I started it in May taking 20mg per day. Within a week I had dizziness Which started about an hour of taking it. It's so bad I tripped and
After severe side effects of HU I was lucky enough to be prescribed JAKAFI.. I was so delighted I thought it was going to be the answer to my problems. Sadly no. I started it in May taking 20mg per day. Within a week I had dizziness Which started about an hour of taking it. It's so bad I tripped and
Heather270240
in
MPN Voice
3 years ago
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