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Question for Jakafi takers.
I've been on 20mgs a day of Jakafi for over a year because of an enlarged spleen. I feel fine now but had earlier ongoing stomach issues. I wanted to know if anyone here has been on Jakafi for any extended period of time and if there are/were any troubling side effects. Also, any recommendations on
I've been on 20mgs a day of Jakafi for over a year because of an enlarged spleen. I feel fine now but had earlier ongoing stomach issues. I wanted to know if anyone here has been on Jakafi for any extended period of time and if there are/were any troubling side effects. Also, any recommendations on
Peaches230
in
MPN Voice
2 years ago
ULTRA-V trial discontinuing
My second post in a day. I wanted to share how my doctor approached TG Therapeutics pulling the trial as well as not seeking umbralisib FDA approval. I was in phase two and finished venetoclax and ublituximab a year ago. Because I didn't quite reach MRD negative (blood did; bone marrow did not), we
My second post in a day. I wanted to share how my doctor approached TG Therapeutics pulling the trial as well as not seeking umbralisib FDA approval. I was in phase two and finished venetoclax and ublituximab a year ago. Because I didn't quite reach MRD negative (blood did; bone marrow did not), we
beanlake14
in
CLL Support
2 years ago
What's the latest on access to COVID -19 treatments for the immunocompromised
The
Leukaemia
Care information page has been updated to take into account latest information of what treatments have been recently made available for immunocompromised patients, eligibility criteria and processes to follow to gain access if you are included in eligibility criteria. https://www.leukaemiacare.org.uk
The
Leukaemia
Care information page has been updated to take into account latest information of what treatments have been recently made available for immunocompromised patients, eligibility criteria and processes to follow to gain access if you are included in eligibility criteria. https://www.leukaemiacare.org.uk
HAIRBEAR_UK
in
Leukaemia Support
3 years ago
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EVOLVE trial for high risk chronic lymphocytic leukemia - CLL patients will test an early treatment intervention Vs watch and wait
'[i]The goal of the S1925 [EVOLVE] trial is to find out if early treatment can help people with chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL) live longer and have a better quality of life.[/i]' '[i]Studies show that early treatment using older chemotherapy drugs doesn’t help
'[i]The goal of the S1925 [EVOLVE] trial is to find out if early treatment can help people with chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL) live longer and have a better quality of life.[/i]' '[i]Studies show that early treatment using older chemotherapy drugs doesn’t help
CLLerinOz
Administrator
in
CLL Support
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
Stopping Ruxolitinib
I had ET which has progressed to MF and have been on 2x5mg ruxolitinib for about 8 months. I've had skin tingling from before I started on ruxolitinib but it has been getting more widespread. The gp has asked for a neurologist appointment but no idea when that will happen. Because rux can affect nerves
I had ET which has progressed to MF and have been on 2x5mg ruxolitinib for about 8 months. I've had skin tingling from before I started on ruxolitinib but it has been getting more widespread. The gp has asked for a neurologist appointment but no idea when that will happen. Because rux can affect nerves
Scaredy_cat
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
Paper on Misc Mutations
. -- ASXL1 is important in leukemia: <<ASXL1 mutations have significant impacts on prognosis and have been identified in 47% of MPN in the leukemic phase>> -- HU vs allele, molec response is not part of resistance: <<Whilst European
Leukaemia
NET (ELN) has a definition for resistance to hydroxyurea,
. -- ASXL1 is important in leukemia: <<ASXL1 mutations have significant impacts on prognosis and have been identified in 47% of MPN in the leukemic phase>> -- HU vs allele, molec response is not part of resistance: <<Whilst European
Leukaemia
NET (ELN) has a definition for resistance to hydroxyurea,
EPguy
in
MPN Voice
3 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
in
Leukaemia Support
2 years ago
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
Statement from NHS digital acknowledging CLL error in PCR codes
Background: • On 25 January 2022, it was identified that a medical code used to identify Chronic lymphocytic
leukaemia
(CLL) had been accidentally excluded in the CLL cohort due to human error.
Background: • On 25 January 2022, it was identified that a medical code used to identify Chronic lymphocytic
leukaemia
(CLL) had been accidentally excluded in the CLL cohort due to human error.
Bartlet
in
CLL Support
3 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
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
in
Leukaemia Support
3 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
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
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
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