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green tea
I was told to drink lots of green tea when I was first diagnosed with CLL 9 months ago.But it seems like my spleen hurts more when I drink a cup of green tea or take a green tea capsule. Am I missing something?
I was told to drink lots of green tea when I was first diagnosed with CLL 9 months ago.But it seems like my spleen hurts more when I drink a cup of green tea or take a green tea capsule. Am I missing something?
Nugent666
in
CLL Support
2 years ago
Oncology Learning Network CME- Emerging Treatments for CLL / SLL included in NCCN and ESMO guidelines
This video and most on the Oncology Learning Network CME are intended for trained medical professionals, but those comfortable with MedSpeak can sign up for an account to view this excellent presentation by Dr. Nicole Lamanna of Columbia NY Presbyterian here: https://hmpeducation.com/content/access-webcast
This video and most on the Oncology Learning Network CME are intended for trained medical professionals, but those comfortable with MedSpeak can sign up for an account to view this excellent presentation by Dr. Nicole Lamanna of Columbia NY Presbyterian here: https://hmpeducation.com/content/access-webcast
lankisterguy
Volunteer
in
CLL Support
2 years ago
Patient Power CLL & Fatigue 2022-10-19.
Fatigue is a side effect shared by just about every patient with chronic lymphocytic leukemia (CLL). In this replay of a recent CLL Answers Now program, CLL patient and host Brad Adams and Carmelita Escalante, MD, from the Cancer-Related Fatigue Clinic at the University of Texas MD Anderson Cancer Center
Fatigue is a side effect shared by just about every patient with chronic lymphocytic leukemia (CLL). In this replay of a recent CLL Answers Now program, CLL patient and host Brad Adams and Carmelita Escalante, MD, from the Cancer-Related Fatigue Clinic at the University of Texas MD Anderson Cancer Center
lankisterguy
Volunteer
in
CLL Support
2 years ago
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CLL testing
hi relatively new in here. I cannot see a pinned post on this subject but apologies if i missed it. i am on watch and wait and next check up isnt till December. I have read posts about deletions and mutations and how it influences long term prognosis re future treatment, aggressiveness and mutations
hi relatively new in here. I cannot see a pinned post on this subject but apologies if i missed it. i am on watch and wait and next check up isnt till December. I have read posts about deletions and mutations and how it influences long term prognosis re future treatment, aggressiveness and mutations
Saju21
in
CLL Support
2 years ago
COVID: Staying Safe As The Virus Evolves - LLS Podcast / CLL Society’s COVID-19 Update December 5th, 2022 / Dec 15 2022 end Antibody Study
The Bloodline with LLS has a new episode!
https://thebloodline.org/TBL/132e134/?c_src=email&c_src2=sfmc&utm_source=sfmc&utm_medium=email&utm_campaign=Podcast+Episode+Announcement+-+COVID+-+December2022&utm_term COVID: Staying Safe As The Virus Evolves Join us as we speak to Dr. Lee Greenberger
The Bloodline with LLS has a new episode!
https://thebloodline.org/TBL/132e134/?c_src=email&c_src2=sfmc&utm_source=sfmc&utm_medium=email&utm_campaign=Podcast+Episode+Announcement+-+COVID+-+December2022&utm_term COVID: Staying Safe As The Virus Evolves Join us as we speak to Dr. Lee Greenberger
lankisterguy
Volunteer
in
CLL Support
2 years ago
ET accelerated progression
hi. I have had ET since 2004, treated with varying doses of HU and in later years also Peg. Apart from unstable platelets I have been relatively symptom free. Until this year! I have definitely struggled with HU, getting terrible mouth sores. I had a bone marrow biopsy recently which has confirmed
hi. I have had ET since 2004, treated with varying doses of HU and in later years also Peg. Apart from unstable platelets I have been relatively symptom free. Until this year! I have definitely struggled with HU, getting terrible mouth sores. I had a bone marrow biopsy recently which has confirmed
Smdg
in
MPN Voice
2 years ago
2022 American College of Rheumatology Classification Criteria for Giant Cell Arteritis
This came to my attention in the Lancet: ‘Better tools required for biopsy negative giant cell Arteritis’ https://click.notification.elsevier.com/CL0/https:%2F%2Fwww.thelancet.com%2Fjournals%2Flanrhe%2Farticle%2FPIIS2665-9913(22)00252-1%2Ffulltext%3Fdgcid=raven_jbs_aip_email/1/01000184993a7770-46052eb1
This came to my attention in the Lancet: ‘Better tools required for biopsy negative giant cell Arteritis’ https://click.notification.elsevier.com/CL0/https:%2F%2Fwww.thelancet.com%2Fjournals%2Flanrhe%2Farticle%2FPIIS2665-9913(22)00252-1%2Ffulltext%3Fdgcid=raven_jbs_aip_email/1/01000184993a7770-46052eb1
Exflex
in
PMRGCAuk
2 years ago
PV patients and Common Variable Immune Deficiency Adult Onset
I have been a PV patient since 2012 and on Ruxolitinib 20mg 2xday since 2017. In the past two years my IG's have begun to fall as have my B cells and T cells. My oncologist referred me to Immunology. After several subset blood tests, they have determined that my immune system is failing and I have
I have been a PV patient since 2012 and on Ruxolitinib 20mg 2xday since 2017. In the past two years my IG's have begun to fall as have my B cells and T cells. My oncologist referred me to Immunology. After several subset blood tests, they have determined that my immune system is failing and I have
Psteuer
in
MPN Voice
2 years ago
Fred Hutchinson Cancer Center receives $710.5 million gift to accelerate cancer and infectious disease research.
This gift will enable Fred Hutch to recruit about 36 new researchers from a variety of scientific areas, including early- and mid-career researchers and senior scientists. The funding includes resources for lab space, equipment, and technology for Fred Hutch’s collaborative research environment. https
This gift will enable Fred Hutch to recruit about 36 new researchers from a variety of scientific areas, including early- and mid-career researchers and senior scientists. The funding includes resources for lab space, equipment, and technology for Fred Hutch’s collaborative research environment. https
gardening-girl
in
CLL Support
2 years ago
Ruxolitinib update.
Two weeks today I started Ruxolitinib. Within day two, my back pain by my ribs went, spleen pain is easing, day sweats have gone, night sweat are wasting too. Bone ache, what bone ache. I feel good. I am 100% better than I was months ago. I get a heavy headache (not pain) now and then. I take
Two weeks today I started Ruxolitinib. Within day two, my back pain by my ribs went, spleen pain is easing, day sweats have gone, night sweat are wasting too. Bone ache, what bone ache. I feel good. I am 100% better than I was months ago. I get a heavy headache (not pain) now and then. I take
wendycu
in
MPN Voice
2 years ago
Dx of ET vs PV
Some of this is likely redundant, but we have many posts on this subject and plenty of curiosity. Here is a bit more, as always no single report is the last word: The most interesting finding is that RBC, a measure we all get in our CBC, FBC, can distinguish Jak2 ET and PV when marrow points to an
Some of this is likely redundant, but we have many posts on this subject and plenty of curiosity. Here is a bit more, as always no single report is the last word: The most interesting finding is that RBC, a measure we all get in our CBC, FBC, can distinguish Jak2 ET and PV when marrow points to an
EPguy
in
MPN Voice
2 years ago
RISK OF DYING OF COVID DURING THIS OMICRON PHASE
Hi, Covid Mortality Rates, I am wondering about the reality. I've read everything from 33% - 89% until Omicron. I've read 2% in a recent publication from Denmark during their Omicron phase, and most of those deaths were in age > than 71, with many other serious morbidities. Half of those dying
Hi, Covid Mortality Rates, I am wondering about the reality. I've read everything from 33% - 89% until Omicron. I've read 2% in a recent publication from Denmark during their Omicron phase, and most of those deaths were in age > than 71, with many other serious morbidities. Half of those dying
skipro
in
CLL Support
2 years ago
Ruxolitinib and NSAIDs
Would anyone care to comment on the Jakafi label warnings against using NSAIDs? There is reportedly an increased risk of bleeding. If this is really the case, I guess I'm limited to acetaminophen for pain management.
Would anyone care to comment on the Jakafi label warnings against using NSAIDs? There is reportedly an increased risk of bleeding. If this is really the case, I guess I'm limited to acetaminophen for pain management.
sbs_patient
in
MPN Voice
2 years ago
COVID update: Who remains at higher risk? by LLS.org
COVID update: Who remains at higher risk? https://www.lls.org/covid-19-resources Almost exactly three years ago on December 12, 2019, we received the first reports of a cluster of patients in China with symptoms of what turned out to be COVID-19. Vaccines and COVID-19 treatments have dramatically
COVID update: Who remains at higher risk? https://www.lls.org/covid-19-resources Almost exactly three years ago on December 12, 2019, we received the first reports of a cluster of patients in China with symptoms of what turned out to be COVID-19. Vaccines and COVID-19 treatments have dramatically
lankisterguy
Volunteer
in
CLL Support
2 years ago
Acalabrutinib + Ruxolitinib interactions
Hello I have CLL (taking Acalabrutinib ) I also have Myelofibrosis and my Dr might put me on Ruxolitinib..... I am Looking for interactions between both drugs. I have checked drugs.com and Epocrates Looking for someone with more info or someone taking this combination Thank you
Hello I have CLL (taking Acalabrutinib ) I also have Myelofibrosis and my Dr might put me on Ruxolitinib..... I am Looking for interactions between both drugs. I have checked drugs.com and Epocrates Looking for someone with more info or someone taking this combination Thank you
antonb
in
CLL Support
2 years ago
Atypical CF -diagnosed in UK? Results back
After the better part of a year, I finally received my results for CF and PCD testing. The initial brush biopsy for PCD indicated no mucociliary clearance amongst other things. However, they regrew the cilia and decided this was caused by mucus trapping the cilia. I was told they had to retest the
After the better part of a year, I finally received my results for CF and PCD testing. The initial brush biopsy for PCD indicated no mucociliary clearance amongst other things. However, they regrew the cilia and decided this was caused by mucus trapping the cilia. I was told they had to retest the
Person99
in
Lung Conditions Community Forum
2 years ago
Navigating the Hidden Costs of Clinical Trials on Patient Power
Navigating the Hidden Costs of Clinical Trials https://www.patientpower.info/navigating-the-hidden-costs-of-clinical-trials Nearly two years ago, Brad Adams’ doctor presented him with a few options to treat his chronic lymphocytic leukemia after it returned. Adams could continue taking an oral treatment
Navigating the Hidden Costs of Clinical Trials https://www.patientpower.info/navigating-the-hidden-costs-of-clinical-trials Nearly two years ago, Brad Adams’ doctor presented him with a few options to treat his chronic lymphocytic leukemia after it returned. Adams could continue taking an oral treatment
lankisterguy
Volunteer
in
CLL Support
2 years ago
Tocilizumab
Do other people find the injector pens are painful, intense stinging. Is there anything that can help this. Thank you.
Do other people find the injector pens are painful, intense stinging. Is there anything that can help this. Thank you.
Hidden
in
PMRGCAuk
2 years ago
Save the date! Our first conference for over two years! We're very pleased to invite you to our conference in Glasgow later this month.
We are excited to announce that our first conference for over two years will be held in Glasgow.
Topic: 'Managing CLL in 2022- Treatment guidelines explained'
When:
Tuesday 18 October
Where:
Voco Grand Central, 99 Gordon Street, Glasgow, G1 3SF. The centre is within the
We are excited to announce that our first conference for over two years will be held in Glasgow.
Topic: 'Managing CLL in 2022- Treatment guidelines explained'
When:
Tuesday 18 October
Where:
Voco Grand Central, 99 Gordon Street, Glasgow, G1 3SF. The centre is within the
pkguk2
CLL Support Association
in
CLL Support
2 years ago
pre fibrotic myelofibrosis
Hi all hope your well. Could anyone help me I had a BMB nad results say I have Pre Fibrotic myelofibrosis changes not sure what this means I have ET My Haemotoligist has suggested changing to Pegylated Interferon Has anyone had same diagnosis Is anyone on htis medication to and can tell
Hi all hope your well. Could anyone help me I had a BMB nad results say I have Pre Fibrotic myelofibrosis changes not sure what this means I have ET My Haemotoligist has suggested changing to Pegylated Interferon Has anyone had same diagnosis Is anyone on htis medication to and can tell
JeniMac
in
MPN Voice
2 years ago
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