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Patient information booklets - we need your help!
We are reviewing our patient information booklets and want to include as much useful information as possible for
leukaemia
patients, ensuring the most common questions are answered in the booklets.
We are reviewing our patient information booklets and want to include as much useful information as possible for
leukaemia
patients, ensuring the most common questions are answered in the booklets.
LCAlex
Administrator
in
Leukaemia CARE
2 years ago
Are you a CLL patient who is unsure of why you are on watch and wait?
Webinar: 3.30pm 12th April
Registration
: Understanding active monitoring ('watch and wait') in CLL https://us02web.zoom.us/webinar/register/WN_FVQdc25bR5Sbr3waCLL1eA The overall aim of this webinar is to support CLL patients to be better able to live well with active monitoring also known
Webinar: 3.30pm 12th April
Registration
: Understanding active monitoring ('watch and wait') in CLL https://us02web.zoom.us/webinar/register/WN_FVQdc25bR5Sbr3waCLL1eA The overall aim of this webinar is to support CLL patients to be better able to live well with active monitoring also known
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
2 years ago
Transplant waiting list imminent/Nintedanib feedback
Last and by no means least, I celebrated my stem cell transplant for
leukaemia
at the weekend. It's now 18 years post-transplant and
leukaemia
free for me. Whilst the transplant may well have played a part in my lung disease, I don't regret my decision in the slightest.
Last and by no means least, I celebrated my stem cell transplant for
leukaemia
at the weekend. It's now 18 years post-transplant and
leukaemia
free for me. Whilst the transplant may well have played a part in my lung disease, I don't regret my decision in the slightest.
dodgylungrunner
British Lung Foundation
in
Lung Conditions Community Forum
2 years ago
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Clinical Trail Updates for Patients
This is a different webinar that the one by Dr. Mesa on March 30. From our friends at MPN Advocacy & Education International Tuesday, March 29, 2022, 11:30 am- 1:00 pm EST Clinical Trial Updates for Patients If you or a loved one have myelofibrosis, polycythemia vera, or essential thrombocythemia
This is a different webinar that the one by Dr. Mesa on March 30. From our friends at MPN Advocacy & Education International Tuesday, March 29, 2022, 11:30 am- 1:00 pm EST Clinical Trial Updates for Patients If you or a loved one have myelofibrosis, polycythemia vera, or essential thrombocythemia
hunter5582
in
MPN Voice
2 years ago
By 5 years, about 14% of patients have undetectable JAK2 mutations.
« Now with this interferon tolerance improved, your abilities improve, response is excellent, and there is a potential for more. I highlighted in my presentation a molecular response. Molecular response is where you are decreasing the JAK2allele burden. That's the percent of cells in a sample of the
« Now with this interferon tolerance improved, your abilities improve, response is excellent, and there is a potential for more. I highlighted in my presentation a molecular response. Molecular response is where you are decreasing the JAK2allele burden. That's the percent of cells in a sample of the
Manouche
in
MPN Voice
2 years ago
Haemolytic anaemia
I had a nose around on the web and found that late onset haemolytic anaemia can be caused by interferon Alfa after 3-38 months, tho a rare side effect. ( Study was on patients with
leukaemia
A. Andriani et al) Can anyone shed any light?
I had a nose around on the web and found that late onset haemolytic anaemia can be caused by interferon Alfa after 3-38 months, tho a rare side effect. ( Study was on patients with
leukaemia
A. Andriani et al) Can anyone shed any light?
Joetcalr
in
MPN Voice
2 years ago
Me & Parkinson's & Future
Some of these included: Meningitis Trust, BHF and helping children with
Leukaemia
.
Some of these included: Meningitis Trust, BHF and helping children with
Leukaemia
.
DopamineWarrior
in
Cure Parkinson's
2 years ago
CoQ10 dosage and when to take ?
I have CLL and my hematologist approved CoQ10. CoQ10 is recommended in Mayo litererature, for those with no counter-indications. But I lack good information about how many mg CoQ10 that I could ingest daily, and when to take the cap or caps . Thus, I would appreciate guidance. Also suggestions
I have CLL and my hematologist approved CoQ10. CoQ10 is recommended in Mayo litererature, for those with no counter-indications. But I lack good information about how many mg CoQ10 that I could ingest daily, and when to take the cap or caps . Thus, I would appreciate guidance. Also suggestions
janvog
in
CLL Support
2 years ago
NHS sending out a PCR test to all CLL patients
I've just read
Leukaemia
Care's latest email newsletter. In their advice about these new Covid treatments for the likes of us, they say: "If you have symptoms of COVID-19, you should take a PCR test.
I've just read
Leukaemia
Care's latest email newsletter. In their advice about these new Covid treatments for the likes of us, they say: "If you have symptoms of COVID-19, you should take a PCR test.
flyhigher
in
CLL Support
2 years ago
Webinar re. MPN Clinical Trials as an Option
Should you consider an MPN clinical trial? In this webinar, Dr. Ruben Mesa will provide an overview of clinical trials—including the phases—and define common trial terms and types. Dr. Mesa will also share advice for trial participation and give an update on the latest advances in MPN research. Dr
Should you consider an MPN clinical trial? In this webinar, Dr. Ruben Mesa will provide an overview of clinical trials—including the phases—and define common trial terms and types. Dr. Mesa will also share advice for trial participation and give an update on the latest advances in MPN research. Dr
hunter5582
in
MPN Voice
2 years ago
Is ET a Cancer
Good Day! To all .. My name is Ryna, from Singapore . I need some information with regards to Essential Thrombocytosis. 1/3/2022 : I was diagnosed with ET . Platelet Count : 548 , JAK2 positive . My hematologies did not prescribe me with any medication as she told me I don’t need any medication
Good Day! To all .. My name is Ryna, from Singapore . I need some information with regards to Essential Thrombocytosis. 1/3/2022 : I was diagnosed with ET . Platelet Count : 548 , JAK2 positive . My hematologies did not prescribe me with any medication as she told me I don’t need any medication
Ryna-Ally
in
MPN Voice
2 years ago
Evusheld shots - What now?
I just had the two Evusheld shots this week. I had CLL for several years and last November completed a 15 month clinical trial (041702) with Ibrutinib, Obinituzumab and Venetoclax. Happily, at the end I was declared uMRD. I have had 3 Pfizer shots and then a Moderna a month ago. None of these generated
I just had the two Evusheld shots this week. I had CLL for several years and last November completed a 15 month clinical trial (041702) with Ibrutinib, Obinituzumab and Venetoclax. Happily, at the end I was declared uMRD. I have had 3 Pfizer shots and then a Moderna a month ago. None of these generated
Iupiter
in
CLL Support
2 years ago
Unusual results on standard differential -- would love feedback (and, if possible, reassurance?)
Hey, all, yesterday I was a bit shaken by results that were, for me, unusual, coinciding with the most clipped doctor visit ever had, so left full of unanswered questions. My lymphs had gone quite up (okay, that's CLL progressing) and WBD went well up too (okay, CLL progressing) BUT, neutrophils, which
Hey, all, yesterday I was a bit shaken by results that were, for me, unusual, coinciding with the most clipped doctor visit ever had, so left full of unanswered questions. My lymphs had gone quite up (okay, that's CLL progressing) and WBD went well up too (okay, CLL progressing) BUT, neutrophils, which
Vlaminck
in
CLL Support
2 years ago
MPN Progression Webinar
Hunter very helpfully posted the recording of this webinar https://healthunlocked.com/mpnvoice/posts/147644509/mpn-progression-webinar-recording Much is familiar to us. Here are some high lights. It's long so seems worth a new post. My notes are sort of fragmented. Most comments here are from Dr
Hunter very helpfully posted the recording of this webinar https://healthunlocked.com/mpnvoice/posts/147644509/mpn-progression-webinar-recording Much is familiar to us. Here are some high lights. It's long so seems worth a new post. My notes are sort of fragmented. Most comments here are from Dr
EPguy
in
MPN Voice
2 years ago
LLS Dr. Greenberger and Dr. Saltzman update on COVID-19 pandemic, the LLS Antibody Research Study, patients responses to the COVID vaccines
Protecting Patients: COVID and Vaccine Updates to the (USA) LLS Ciitizen Study https://www.ciitizen.com/lls/?utm_source=LLS&utm_medium=Partner%20Marketing&utm_campaign - Join us as we speak to Dr. Lee Greenberger, the Chief Scientific Officer of The Leukemia & Lymphoma Society, and Dr. Larry Saltzman
Protecting Patients: COVID and Vaccine Updates to the (USA) LLS Ciitizen Study https://www.ciitizen.com/lls/?utm_source=LLS&utm_medium=Partner%20Marketing&utm_campaign - Join us as we speak to Dr. Lee Greenberger, the Chief Scientific Officer of The Leukemia & Lymphoma Society, and Dr. Larry Saltzman
lankisterguy
Volunteer
in
CLL Support
2 years ago
Blood cancer uk explain why some CLLers are finally getting priority PCR tests
There seemed to be a particular problem with people with chronic lymphocytic
leukaemia
(CLL), which was worrying because everyone with CLL should be eligible to be considered for the new treatments. 💬 As people shared their experiences (and thank you to everyone who did so!)
There seemed to be a particular problem with people with chronic lymphocytic
leukaemia
(CLL), which was worrying because everyone with CLL should be eligible to be considered for the new treatments. 💬 As people shared their experiences (and thank you to everyone who did so!)
Bartlet
in
CLL Support
2 years ago
Webinar - 3.30pm Thursday 10th February - Latest updates on CLL and what this means for you
Advocates Network and
Leukaemia
Care.
Advocates Network and
Leukaemia
Care.
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
2 years ago
Webinar - 3.30pm 8th February - Latest updates on AML and what this means for you
Advocates Network and
Leukaemia
Care.
Advocates Network and
Leukaemia
Care.
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
2 years ago
Webinar - 6.30pm 8th February - Latest updates on ALL and what this means for you
This is being organised as a collaboration between the Acute
Leukaemia
Advocates Network and
Leukaemia
Care. You can register here: https://us02web.zoom.us/webinar/register/WN_voADau9YRjaWQof0DN8D-Q
This is being organised as a collaboration between the Acute
Leukaemia
Advocates Network and
Leukaemia
Care. You can register here: https://us02web.zoom.us/webinar/register/WN_voADau9YRjaWQof0DN8D-Q
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
2 years ago
JAKAFI not working
Dr changed my med from HU (2000mg) to Jakafi (15mg) 2 months ago, but the blood test result worsening. Hb, white blood, Hct etc. keep up. Even platelets up from 600 to 1.198. Does anyone have same experienced...? What do you do..? Please advise. Thanks
Dr changed my med from HU (2000mg) to Jakafi (15mg) 2 months ago, but the blood test result worsening. Hb, white blood, Hct etc. keep up. Even platelets up from 600 to 1.198. Does anyone have same experienced...? What do you do..? Please advise. Thanks
william-Indo
in
MPN Voice
2 years ago
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