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LLS Ciitizen: Emerging Research on COVID-19 and Blood Cancer on Thursday, September 30 at 1:00PM ET. UPDATE Research Now webinar,
Thank you for joining the LLS National Patient Registry and playing such an important role in our efforts to support blood cancer patients during the pandemic. Information continues to change rapidly, and vaccine effectiveness for blood cancer patients remains an urgent issue. That is why LLS is
Thank you for joining the LLS National Patient Registry and playing such an important role in our efforts to support blood cancer patients during the pandemic. Information continues to change rapidly, and vaccine effectiveness for blood cancer patients remains an urgent issue. That is why LLS is
lankisterguy
Volunteer
in
CLL Support
3 years ago
Bispecific Antibodies and CLL
Last year Dr Brian Koffman https://healthunlocked.com/user/bkoffman wrote a succinct piece Bispecific Antibodies: what are they and are they the future of treatment for CLL (chronic lymphocytic leukemia)? https://cllsociety.org/2020/06/bispecific-antibodies-what-are-they-and-are-they-the-future-of-treatment-for-cll-chronic-lymphocytic-leukemia
Last year Dr Brian Koffman https://healthunlocked.com/user/bkoffman wrote a succinct piece Bispecific Antibodies: what are they and are they the future of treatment for CLL (chronic lymphocytic leukemia)? https://cllsociety.org/2020/06/bispecific-antibodies-what-are-they-and-are-they-the-future-of-treatment-for-cll-chronic-lymphocytic-leukemia
bennevisplace
in
CLL Support
3 years ago
Expert Perspective on Key Trial Updates in Treatment of CLL: What You Need to Know From ASCO/EHA/ICML 2021
17th Sept 21 [i]"George Follows, a UK CLL expert, provides his thoughts on updated data from key studies in chronic lymphocytic leukemia (CLL) that were presented at the 2021 meetings of the American Society of Clinical Oncology (ASCO), European Hematology Association (EHA), and International Conference
17th Sept 21 [i]"George Follows, a UK CLL expert, provides his thoughts on updated data from key studies in chronic lymphocytic leukemia (CLL) that were presented at the 2021 meetings of the American Society of Clinical Oncology (ASCO), European Hematology Association (EHA), and International Conference
Jm954
Administrator
in
CLL Support
3 years ago
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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
Alex TLC Digital Community Weekend
The agenda for our weekend is available to view: https://www.alextlc.org/digital-community-weekend-2021/ On Saturday, the Science Day, we have presentations about the new NHS Inherited White Matter Disorders Patient Registry and research updates on the following Leukodystrophies: - AMN & ALD - Alexander's
The agenda for our weekend is available to view: https://www.alextlc.org/digital-community-weekend-2021/ On Saturday, the Science Day, we have presentations about the new NHS Inherited White Matter Disorders Patient Registry and research updates on the following Leukodystrophies: - AMN & ALD - Alexander's
Hidden
Partner
in
Leukodystrophy 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
Intrinsic factor and parietal cell antibody positive but MMA normal is it PA?
I have intrinsic factor abs and anti parietal cells but methylmalonic acid level is normal. B12,folate, hb are all in range.I have Hashis and a range of B12 deficiency systems Could anyone please advise if there is ever a situation when a GP would not prescribe B12 given the ap and IFabs? I am beginning
I have intrinsic factor abs and anti parietal cells but methylmalonic acid level is normal. B12,folate, hb are all in range.I have Hashis and a range of B12 deficiency systems Could anyone please advise if there is ever a situation when a GP would not prescribe B12 given the ap and IFabs? I am beginning
Aumshantii
in
Pernicious Anaemia Society
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
Any IL-6 inhibitor or IL6 receptor inhibitor situation and Liver total protein issue
I would like to ask whether there are such patients with myelofibrosis. Even if they take Ruxolitinib, and take interferon at the same time. The total protein in the biochemistry of the liver continues to decline slowly. This decline is continuous and may be the trend of slow decline for several years
I would like to ask whether there are such patients with myelofibrosis. Even if they take Ruxolitinib, and take interferon at the same time. The total protein in the biochemistry of the liver continues to decline slowly. This decline is continuous and may be the trend of slow decline for several years
merlisa
in
MPN Voice
3 years ago
Different IGHV mutation tests?
Are there different tests for IGHV mutation? PCR? Sanger? NGS? My PCR test report says no mutations detected. Should I retest with other methods? Also, is IGHV mutation status innate or developed during the lifetime? If it’s innate and genetic, since I’m unmutated, should I get my children tested for
Are there different tests for IGHV mutation? PCR? Sanger? NGS? My PCR test report says no mutations detected. Should I retest with other methods? Also, is IGHV mutation status innate or developed during the lifetime? If it’s innate and genetic, since I’m unmutated, should I get my children tested for
nuji
in
CLL Support
3 years ago
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