Search
Search
About
Log in
Join
Experiences with
Acute leukaemia
Posts
Communities
2,753 public posts
Filter results
Ibrutinib vs FCR: does order of therapy matter?
Time for a really specific question that is at the nub of the decision faced by doctors and patients when it is time to initiate first treatment. Does it matter which treatment we choose first? If you are a younger patient then clearly one of the critical issues is that sadly our disease is rarely cured
Time for a really specific question that is at the nub of the decision faced by doctors and patients when it is time to initiate first treatment. Does it matter which treatment we choose first? If you are a younger patient then clearly one of the critical issues is that sadly our disease is rarely cured
AdrianUK
in
CLL Support
6 years ago
NHSE publish positive review outcome for Ibrutinib use in relapsed CLL
Hi all, I have pasted below the Leukaemia Care response to today's good news, following the work of Leukaemia Care, CLLSA, The UK CLL Forum and so many of us together, to get this turn around. Well done everyone. Today NHS England removes restrictions that had been preventing relapsed chronic lymphocytic
Hi all, I have pasted below the Leukaemia Care response to today's good news, following the work of Leukaemia Care, CLLSA, The UK CLL Forum and so many of us together, to get this turn around. Well done everyone. Today NHS England removes restrictions that had been preventing relapsed chronic lymphocytic
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
6 years ago
Green tea with SLE
Hi there I have recently started drinking green tea only once a day in evening. Today I feel like I'm going to have an anxiety attack weird sensations. Has anyone else experienced these symptoms??
Hi there I have recently started drinking green tea only once a day in evening. Today I feel like I'm going to have an anxiety attack weird sensations. Has anyone else experienced these symptoms??
Hidden
in
LUPUS UK
6 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Any ideas?
Hi. I have joined this community to seek some idea as to what to expect for my friend. He was diagnosed with ALL earlier this year. All very sudden. He went through chemo regimes and subsequent stem cell transplant two months ago. All bloods and recovery going well. Last bloods about a week ago - all
Hi. I have joined this community to seek some idea as to what to expect for my friend. He was diagnosed with ALL earlier this year. All very sudden. He went through chemo regimes and subsequent stem cell transplant two months ago. All bloods and recovery going well. Last bloods about a week ago - all
Marilyn1959
in
Leukaemia CARE
6 years ago
Response and Survival Rates for FCR and Ibrutinib
Those of you who waded through my post yesterday on clonal evolution will be glad to know this is a much more simple one! I am going to break a statistical rule today but am in good company as the information below is based in part on a table found in the UK CLL 2018 guidelines: https://onlinelibrary.wiley.com
Those of you who waded through my post yesterday on clonal evolution will be glad to know this is a much more simple one! I am going to break a statistical rule today but am in good company as the information below is based in part on a table found in the UK CLL 2018 guidelines: https://onlinelibrary.wiley.com
AdrianUK
in
CLL Support
6 years ago
Clonal Evolution, mutations and resistance to CLL treatment
When someone is diagnosed with CLL they have at least one clone of B lymphocytes that are growing faster than they should and/or dying less than they should. As a result we are diagnosed with cancer. But the illness may be slow growing, not even needing treatment initially, but may develop to a point
When someone is diagnosed with CLL they have at least one clone of B lymphocytes that are growing faster than they should and/or dying less than they should. As a result we are diagnosed with cancer. But the illness may be slow growing, not even needing treatment initially, but may develop to a point
AdrianUK
in
CLL Support
6 years ago
Saturday 8th September, Malvern 'Spot Leukaemia', fun dog show, picnic and dog walk
If you are in the Midlands come and join us in the first week of Blood Cancer Awareness Month for a fun day out to help raise awareness about the condition and how early diagnosis, appropriate testing and timely access to information improves outcomes and quality of life. please let others know and circulate
If you are in the Midlands come and join us in the first week of Blood Cancer Awareness Month for a fun day out to help raise awareness about the condition and how early diagnosis, appropriate testing and timely access to information improves outcomes and quality of life. please let others know and circulate
HAIRBEAR_UK
Administrator
in
Leukaemia CARE
6 years ago
Medicinal cannabis
I’ve been told by my GP that he can no longer prescribe Fentanyl lozenges for my breakthrough pain. I’ve always known they are palliative care drugs. They worked for me. Now I’m stressed about how I’ll cope when my last two are gone. Has anyone else had medicinal cannabis prescribed? If so did it work
I’ve been told by my GP that he can no longer prescribe Fentanyl lozenges for my breakthrough pain. I’ve always known they are palliative care drugs. They worked for me. Now I’m stressed about how I’ll cope when my last two are gone. Has anyone else had medicinal cannabis prescribed? If so did it work
Rob395
in
Lung Conditions Community Forum
6 years ago
FLAIR Study Site List Map / UK CLL Expert Centres
I have received from the organisers of the UK FLAIR trial an updated list of hospitals and doctors running the FLAIR trial, which you can find below or by viewing the following google map where you can easily find your closest site: https://www.google.com/maps/d/viewer?mid=16Jbl8Gd7yUX0mh3JdofRQptO6dY4YwSy
I have received from the organisers of the UK FLAIR trial an updated list of hospitals and doctors running the FLAIR trial, which you can find below or by viewing the following google map where you can easily find your closest site: https://www.google.com/maps/d/viewer?mid=16Jbl8Gd7yUX0mh3JdofRQptO6dY4YwSy
AdrianUK
in
CLL Support
6 years ago
Nplate didn't has any effect
My wife had an inject of Nplate 5 days ago Her platelets count was 76 before inject Now after 5days of inject she has 72 count of platelete It seem Nplate didn't has any effect on my wife, what is reason? She had treatment with ivig and rituximub in the past, and those drugs didn't has complete effect
My wife had an inject of Nplate 5 days ago Her platelets count was 76 before inject Now after 5days of inject she has 72 count of platelete It seem Nplate didn't has any effect on my wife, what is reason? She had treatment with ivig and rituximub in the past, and those drugs didn't has complete effect
hamid_80386
in
ITP Support Association
6 years ago
NCS Nerve Conduction Studies EMG Electromyography
Well it’s all happing pain in arms when trying to open packet crisp even holding carrying milk is pain full. That’s with out dexterity issues .. Today received other letter of people who referred me for NCS/EMG Neurophysiology Test guess it’s going to be for results of Sunday’s going’s on ... It’s just
Well it’s all happing pain in arms when trying to open packet crisp even holding carrying milk is pain full. That’s with out dexterity issues .. Today received other letter of people who referred me for NCS/EMG Neurophysiology Test guess it’s going to be for results of Sunday’s going’s on ... It’s just
Hidden
in
Lung Conditions Community Forum
6 years ago
Is anyone been diagnosed with acute Leukemia
I went for a bone biopsy and the doctor thinks I might have it please let me how you’re dealing with it
I went for a bone biopsy and the doctor thinks I might have it please let me how you’re dealing with it
Chil67
in
MPN Voice
6 years ago
TAMARIN STUDY now open across the UK in 13 hospitals
TAMARIN STUDY
The TAMARIN study is a very exciting study based on UK science and is now open in 13 hospitals across the UK. The study is a multicentre phase II clinical trial which will assess the safety and activity of Tamoxifen in MPNs. Many people with MPNs have mutations (changes) to certain
TAMARIN STUDY
The TAMARIN study is a very exciting study based on UK science and is now open in 13 hospitals across the UK. The study is a multicentre phase II clinical trial which will assess the safety and activity of Tamoxifen in MPNs. Many people with MPNs have mutations (changes) to certain
Mazcd
MPNVoice
in
MPN Voice
6 years ago
Saturday 8th September, Malvern 'Spot Leukaemia', fun dog show, picnic and dog walk
Save in your diary - If you are in the Midlands come and join us in the first week of Blood Cancer Awareness Month for a fun day out to help raise awareness about the condition and how early diagnosis, appropriate testing and timely access to information improves outcomes and quality of life. please
Save in your diary - If you are in the Midlands come and join us in the first week of Blood Cancer Awareness Month for a fun day out to help raise awareness about the condition and how early diagnosis, appropriate testing and timely access to information improves outcomes and quality of life. please
HAIRBEAR_UK
Administrator
in
CLL Support
6 years ago
Medical update with no Ibrutinib
Hi all Just an update. As you know I was denied Ibrutinib as I was in remission for 3.8 years and NHS England put a cap at 3 years before relapse. Anyway I've been really struggling and I saw the consultant on Tuesday and he got me in today for the first of 3 strong dosage IV Steriods. The original
Hi all Just an update. As you know I was denied Ibrutinib as I was in remission for 3.8 years and NHS England put a cap at 3 years before relapse. Anyway I've been really struggling and I saw the consultant on Tuesday and he got me in today for the first of 3 strong dosage IV Steriods. The original
Mick491
in
CLL Support
6 years ago
Lymphoma Research Foundation - LRF@lymphoma.org - USA - from Ask the Doctor evening dinner programs to 2.5 day Educational Forums
For our USA members, the CLL Society Alerts & site https://cllsociety.org/upcoming-cll-patient-education-programs/ often include notices of upcoming LRF ( Lymphoma Research Foundation ) and LLS ( Leukemia & Lymphoma Society ) events. There are some interesting opportunities recently announced
For our USA members, the CLL Society Alerts & site https://cllsociety.org/upcoming-cll-patient-education-programs/ often include notices of upcoming LRF ( Lymphoma Research Foundation ) and LLS ( Leukemia & Lymphoma Society ) events. There are some interesting opportunities recently announced
lankisterguy
Volunteer
in
CLL Support
6 years ago
Dr. Wierda on the paradigm shift in CLL.
Dr. Wierda is my doctor and in the short time I met with him in 2017, I didn’t get the impression he was the type to sugar coat anything. He tells it like it is. That’s why this video struck me. I’ve seen the level of excitement increase in the short time I’ve been on W&W not only with his interviews
Dr. Wierda is my doctor and in the short time I met with him in 2017, I didn’t get the impression he was the type to sugar coat anything. He tells it like it is. That’s why this video struck me. I’ve seen the level of excitement increase in the short time I’ve been on W&W not only with his interviews
baq724
in
CLL Support
6 years ago
An Introduction
Greetings: I am a 73yo male with a CLL diagnosis about 6 or 7 years ago. Currently my hematologist has me on a Wait & Watch routine and seeing me every 6 months. He has given me brief overview of how CLL progresses and the chemical treatments available, none of which I'm currently on as I have some ways
Greetings: I am a 73yo male with a CLL diagnosis about 6 or 7 years ago. Currently my hematologist has me on a Wait & Watch routine and seeing me every 6 months. He has given me brief overview of how CLL progresses and the chemical treatments available, none of which I'm currently on as I have some ways
NWcllfighter
in
CLL Support
6 years ago
The Changing Landscape of Lymphoma - National Conference - VANCOUVER, BC - Saturday, September 15, 2018
The Changing Landscape of Lymphoma National Conference - VANCOUVER, BC https://mailchi.mp/lymphoma/sance-dducation-sur-le-lymphome-ville-de-qubec-2555481?e=7b399e8498 Lymphoma Canada invites you to attend the second annual national conference on lymphoma featuring specialists from across Canada.
The Changing Landscape of Lymphoma National Conference - VANCOUVER, BC https://mailchi.mp/lymphoma/sance-dducation-sur-le-lymphome-ville-de-qubec-2555481?e=7b399e8498 Lymphoma Canada invites you to attend the second annual national conference on lymphoma featuring specialists from across Canada.
lankisterguy
Volunteer
in
CLL Support
6 years ago
MPN RESEARCH FOUNDATION LAUNCHES STEM CELL TRANSPLANT TIMING TOOL FOR MPN PATIENTS WITH MF
A new tool to improve stem cell transplant outcomes was announced today by the MPN Research Foundation (MPNRF). The SCT Spectrum Transplant Timing tool (SSTT) was created to facilitate communication between myelofibrosis patients and their physicians. The SSTT is a portable on-line tool based on a
A new tool to improve stem cell transplant outcomes was announced today by the MPN Research Foundation (MPNRF). The SCT Spectrum Transplant Timing tool (SSTT) was created to facilitate communication between myelofibrosis patients and their physicians. The SSTT is a portable on-line tool based on a
Mazcd
MPNVoice
in
MPN Voice
6 years ago
1
...
80
81
82
...
100
Next page
40
50
60
70
80
90
100
Filter results
Clear filters
Posted in
All communities
CLL Support
1625 results
MPN Voice
788 results
Leukaemia CARE
171 results
View top 10 communities
Sort by
Most Relevant
Newest