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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
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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
CSR - CLL
Hello. I have had CLL since 2012. Recently diagnosed with Chronic Central Serous Retinopathy in my right eye, which is a permanent build-up of fluid behind the macula causing sight distortion. There is medical research suggesting that leukemic infiltration is a possibility, albeit a rare one. Have any
Hello. I have had CLL since 2012. Recently diagnosed with Chronic Central Serous Retinopathy in my right eye, which is a permanent build-up of fluid behind the macula causing sight distortion. There is medical research suggesting that leukemic infiltration is a possibility, albeit a rare one. Have any
Lapo
in
CLL Support
6 years ago
Road to BMT...oops just got there (Day +250)
Hello HealthUnlocked Community, I wanted to reach out to everyone and give you an update on Mark’s progress with his BMT, today is Day +250 – can I get a YAHOO!!! We just got back from our clinic appointment down at PMH in Toronto and once again we are thrilled to advise that blood counts are normal
Hello HealthUnlocked Community, I wanted to reach out to everyone and give you an update on Mark’s progress with his BMT, today is Day +250 – can I get a YAHOO!!! We just got back from our clinic appointment down at PMH in Toronto and once again we are thrilled to advise that blood counts are normal
NMMP
in
CLL Support
6 years ago
Needing prayers - heading to emergency room with 101.6 neutropenic fever
Cll specialist called and told me to urgently go to hospital for Antibiotics in case of bacteria infection .... this is my first fever w cll and neutropenia- said I will be there are least 72 hrs 👎. There goes my beach vacation:( ugh so annoying this cancer !!!!!!
Cll specialist called and told me to urgently go to hospital for Antibiotics in case of bacteria infection .... this is my first fever w cll and neutropenia- said I will be there are least 72 hrs 👎. There goes my beach vacation:( ugh so annoying this cancer !!!!!!
Luckyliss
in
CLL Support
6 years ago
Some ideas please
Hello again, I have transferred to the Marsden, I was told at my local hospital of my CLL I have received “copying of letters” but flummoxed 😶 don’t understand what a immunoglobulin gene mutation status is? Also immunophenotyping? Tried looking it up, but not sure familiar with this. Also the doctor
Hello again, I have transferred to the Marsden, I was told at my local hospital of my CLL I have received “copying of letters” but flummoxed 😶 don’t understand what a immunoglobulin gene mutation status is? Also immunophenotyping? Tried looking it up, but not sure familiar with this. Also the doctor
Annieareyouok
in
CLL Support
6 years ago
Putting Your Team together- How many Specialists do you need and what to do if it's not possible to see Even One
I have talked and written extensively on the importance of having a CLL specialist on your team. We have even set up for, sadly only for USA patients at this time, free online consults with CLL specialists through our Expert Access program. We believe strongly in it. But not everyone has such expert
I have talked and written extensively on the importance of having a CLL specialist on your team. We have even set up for, sadly only for USA patients at this time, free online consults with CLL specialists through our Expert Access program. We believe strongly in it. But not everyone has such expert
bkoffman
CLL CURE Hero
in
CLL Support
6 years ago
Acute Lymphoblastic Leukaemia – a wife’s perspective
Read full story here https://www.leukaemiacare.org.uk/support-and-information/latest-from-
leukaemia
-care/blog/
acute
-lymphoblastic-
leukaemia
-a-wifes-perspective/
Read full story here https://www.leukaemiacare.org.uk/support-and-information/latest-from-
leukaemia
-care/blog/
acute
-lymphoblastic-
leukaemia
-a-wifes-perspective/
HAIRBEAR_UK
in
Leukaemia Support
6 years ago
NEWS - Scottish Medicines Consortium (SMC) recommend the use of midostaurin for adult acute leukaemia
The Scottish Medicines Consortium (SMC) have today recommended the use of midostaurin in first-line treatment for adult
acute
myeloid
leukaemia
(AML) patients, who are FMS-like tyrosine kinase 3 (FLT3) mutation-positive.
The Scottish Medicines Consortium (SMC) have today recommended the use of midostaurin in first-line treatment for adult
acute
myeloid
leukaemia
(AML) patients, who are FMS-like tyrosine kinase 3 (FLT3) mutation-positive.
HAIRBEAR_UK
in
Leukaemia Support
6 years ago
Cirmtuzumab
Hi, At ASH, I had the chance to interview Dr. Thomas Kipps, an expert on cirmtuzumab that targets ROR1 (Receptor Tyrosine Kinase Like Orphan Receptor 1). Because ROR1 is found nearly exclusively on cancer cells, an antibody against it may be the holy grail of antibodies, one that hits only the cancer
Hi, At ASH, I had the chance to interview Dr. Thomas Kipps, an expert on cirmtuzumab that targets ROR1 (Receptor Tyrosine Kinase Like Orphan Receptor 1). Because ROR1 is found nearly exclusively on cancer cells, an antibody against it may be the holy grail of antibodies, one that hits only the cancer
bkoffman
CLL CURE Hero
in
CLL Support
6 years ago
My mom 78 years old diagnosed with CLL.
Hi my mom is 78 right now and diagnosed with CLL. Hematologist said that she already had 2010 upon checkihg my folder files of her blood test. Doctor prescribe CHLORAMBUCIL, yo be taken 2 tabs a day... would you advise to proceed with oral chemotheraphy? Or just let her take the herbal meficibe...? Pls
Hi my mom is 78 right now and diagnosed with CLL. Hematologist said that she already had 2010 upon checkihg my folder files of her blood test. Doctor prescribe CHLORAMBUCIL, yo be taken 2 tabs a day... would you advise to proceed with oral chemotheraphy? Or just let her take the herbal meficibe...? Pls
vilmacheng
in
CLL Support
6 years ago
Good news 4 months post CAR-T therapy
Hi I got good news today 4 months post CAR-T when I saw Dr. Kipps. Hgb is over 14 so back to normal. That means the iron that I am taking is working and that my bone marrow is healthy. My ALC (absolute lymphocyte count) was 1.0, and that means are likely no B cells in my peripheral blood which is good
Hi I got good news today 4 months post CAR-T when I saw Dr. Kipps. Hgb is over 14 so back to normal. That means the iron that I am taking is working and that my bone marrow is healthy. My ALC (absolute lymphocyte count) was 1.0, and that means are likely no B cells in my peripheral blood which is good
bkoffman
CLL CURE Hero
in
CLL Support
6 years ago
Expert Reviews Current State of CLL Treatment, Dr. Brander, Duke U
Recent developments in the treatment of patients with chronic lymphocytic leukemia (CLL) have created new, unanswered questions and left clinicians scrambling to keep up with the pace of change, said Danielle Brander, MD. However, she said that is a good problem to have. “For patients who I have sitting
Recent developments in the treatment of patients with chronic lymphocytic leukemia (CLL) have created new, unanswered questions and left clinicians scrambling to keep up with the pace of change, said Danielle Brander, MD. However, she said that is a good problem to have. “For patients who I have sitting
Cllcanada
Top Poster CURE Hero
in
CLL Support
6 years ago
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