Search
Search
About
Log in
Join
Experiences with
Mast cell leukaemia
Posts
Communities
3,564 public posts
Filter results
weird test results
my first test came back positive for gastric parietal cell antibodies using the Elisa test. Second test tests 5 years later for parietal cell antibody titers, comes back negative. Ok is this something that comes and goes?
my first test came back positive for gastric parietal cell antibodies using the Elisa test. Second test tests 5 years later for parietal cell antibody titers, comes back negative. Ok is this something that comes and goes?
BumbleBeeBumble
in
Pernicious Anaemia Society
4 years ago
Revisiting Ibrutinib , but then no Venetoclax?
I am a decade into the CLL journey with non mutated 11q deletion - woohoo! I went through FCR in 2014 and am now relapsing, so gearing up for the next round ... As I noted a couple of months ago here in the UK, I was told that if that: 1. if I start with Ibrutinib s my second line treatment, I cannot
I am a decade into the CLL journey with non mutated 11q deletion - woohoo! I went through FCR in 2014 and am now relapsing, so gearing up for the next round ... As I noted a couple of months ago here in the UK, I was told that if that: 1. if I start with Ibrutinib s my second line treatment, I cannot
Me2AsWell
in
CLL Support
4 years ago
Hand Sanitizers and Disinfectants
Hello, I am wondering if anyone has any knowledge or opinion on the use of hand sanitizers or disinfectants by mpn'ers during this time of Covid. I have read in the past that chemicals, (especially benzene, not in either) have been implicated in causing diseases and/or gene mutations. I am constantly
Hello, I am wondering if anyone has any knowledge or opinion on the use of hand sanitizers or disinfectants by mpn'ers during this time of Covid. I have read in the past that chemicals, (especially benzene, not in either) have been implicated in causing diseases and/or gene mutations. I am constantly
Meatloaf9
in
MPN Voice
4 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Low MCH MCV?
Just a question to anyone else with ET who has dropping MCH & MCV levels, they were previously ok but getting lower each time, I’ve had varying reasons given for this & would be grateful for anyone else’s experience before I try to speak to my consultant again I’ve been told it could be to do with periods
Just a question to anyone else with ET who has dropping MCH & MCV levels, they were previously ok but getting lower each time, I’ve had varying reasons given for this & would be grateful for anyone else’s experience before I try to speak to my consultant again I’ve been told it could be to do with periods
Melaniem59
in
MPN Voice
4 years ago
85 year old not coping with nor responding to treatment
Hi, I am new. My Dad has CLL which has just become symptomatic after 5 years. He has had 3 treatments of Obinutuzimab and Chlorambucil , the first one made him so ill he was rushed to ICU. Now he seems to have hemalosis, as his RBC is very low at 70 and will not increase even after 8 blood transfusions
Hi, I am new. My Dad has CLL which has just become symptomatic after 5 years. He has had 3 treatments of Obinutuzimab and Chlorambucil , the first one made him so ill he was rushed to ICU. Now he seems to have hemalosis, as his RBC is very low at 70 and will not increase even after 8 blood transfusions
TKB2020
in
CLL Support
4 years ago
New and first post might not be related.. please excuse me.
i had severe weight loss, and lot of symptoms in 2018, i went to specialist and got infections tests and all came back good.. but my CD8 cells are very less in the immunity test. after few months with continued symptoms i researched and found my symptoms are related to b12 deficiency and got tested and
i had severe weight loss, and lot of symptoms in 2018, i went to specialist and got infections tests and all came back good.. but my CD8 cells are very less in the immunity test. after few months with continued symptoms i researched and found my symptoms are related to b12 deficiency and got tested and
b12pas
in
Pernicious Anaemia Society
4 years ago
Hyperbaric oxygen therapy...
I just read about a trial of volunteers in Israel who took hyperbaric oxygen therapy (HBOT) for 90 minutes a day, 5 days a week, for 3 months, and the results were apparently nothing less than extraordinary in reversing the ageing process. I then briefly checked the internet and found that dating back
I just read about a trial of volunteers in Israel who took hyperbaric oxygen therapy (HBOT) for 90 minutes a day, 5 days a week, for 3 months, and the results were apparently nothing less than extraordinary in reversing the ageing process. I then briefly checked the internet and found that dating back
Pogee
in
CLL Support
4 years ago
Newly Diagnosed, W&W, yearly visits?
Hi i was recently diagnosed a week ago, my MBL crossed over the 5000 threshold, and now officially RAI 0. Flow/FISH was done, im 13q deleted, ZAP70 and CD38 negative. Doc (oncologist) said it most likely be 10-15 years before i would need treatment, and said he is putting me on yearly checkups. I know
Hi i was recently diagnosed a week ago, my MBL crossed over the 5000 threshold, and now officially RAI 0. Flow/FISH was done, im 13q deleted, ZAP70 and CD38 negative. Doc (oncologist) said it most likely be 10-15 years before i would need treatment, and said he is putting me on yearly checkups. I know
Freeskier989
in
CLL Support
4 years ago
An interesting letter to the editor: Stem Cell Transplantation for Parkinson Disease: Déjà Vu All Over Again? ?
https://academic.oup.com/neurosurgery/advance-article/doi/10.1093/neuros/nyaa487/6027128
https://academic.oup.com/neurosurgery/advance-article/doi/10.1093/neuros/nyaa487/6027128
Farooqji
in
Cure Parkinson's
4 years ago
ICC ruled in favor of AOP Orphan Pharmaceuticals AG in arbitration proceedings pertaining to BESREMi®
«We are relieved that the ICC ruling compensates AOP Orphan now for the delay in getting BESREMi® approved in the European Union, and the delay in bringing this important medication to the patients suffering from polycythaemia vera, a rare and chronic disease of the blood building cells", explains Dr
«We are relieved that the ICC ruling compensates AOP Orphan now for the delay in getting BESREMi® approved in the European Union, and the delay in bringing this important medication to the patients suffering from polycythaemia vera, a rare and chronic disease of the blood building cells", explains Dr
Manouche
in
MPN Voice
4 years ago
Going well so far with MF on Ruxolitinib
When I was diagnosed with post ET Myelofibrosis in August, I was terrified and extremely grateful for the support on this forum. I thought I would just update you and let you know that Ruxolitinib appears to be working well for me. My counts are still not great but are, to quote my haematology nurse,
When I was diagnosed with post ET Myelofibrosis in August, I was terrified and extremely grateful for the support on this forum. I thought I would just update you and let you know that Ruxolitinib appears to be working well for me. My counts are still not great but are, to quote my haematology nurse,
Otterfield
in
MPN Voice
4 years ago
SUGGESTIONS?
I started treatment (B+R) at the end of this past January for 6 months, the results were very good and my oncologist said he would probably start me on a 2 year maintenance program in 3 months of Rituximab every 3 months. I went back to see him after the 3 months and most of my blood work was good except
I started treatment (B+R) at the end of this past January for 6 months, the results were very good and my oncologist said he would probably start me on a 2 year maintenance program in 3 months of Rituximab every 3 months. I went back to see him after the 3 months and most of my blood work was good except
laldoroty
in
CLL Support
4 years ago
Leukemic Evolution of Polycythemia Vera and Essential Thrombocythemia
The authors performed next-generation sequencing on samples from 49 patients with polycythemia vera (PV, n=24) or essential thrombocytosis (ET, n=25) who developed leukemic transformation to identify the associated candidate driver genes. Hierarchical classification identified three mutational groups
The authors performed next-generation sequencing on samples from 49 patients with polycythemia vera (PV, n=24) or essential thrombocytosis (ET, n=25) who developed leukemic transformation to identify the associated candidate driver genes. Hierarchical classification identified three mutational groups
JT_Marlin
in
MPN Voice
4 years ago
The road ahead
My oncologist called me yesterday and said they had found a donor match for a stem cell transplant and did I want to proceed? So a little of my story, I have been on IBRUTINUB for two years and am currently feel great as my lymphocyte count is 16.5 and neutrophils at 3.8. He said because of my higher
My oncologist called me yesterday and said they had found a donor match for a stem cell transplant and did I want to proceed? So a little of my story, I have been on IBRUTINUB for two years and am currently feel great as my lymphocyte count is 16.5 and neutrophils at 3.8. He said because of my higher
steve_canada
in
CLL Support
4 years ago
Rosemary - another anti-leukemia spice!
A 2014 test-tube study found that Ellagic Acid (e,g., anardana, pomegranates, rose hips, strawberries and blackberries), EGCG (e.g., green tea) and Rosmarinic Acid (e.g., Rosemary) can work together to stop leukemia cells from proliferating. Here's the link: https://www.sciencedirect.com/science/article
A 2014 test-tube study found that Ellagic Acid (e,g., anardana, pomegranates, rose hips, strawberries and blackberries), EGCG (e.g., green tea) and Rosmarinic Acid (e.g., Rosemary) can work together to stop leukemia cells from proliferating. Here's the link: https://www.sciencedirect.com/science/article
HowardR
in
CLL Support
4 years ago
A webinar for patients - practical workshop 'Coping with Fatigue' Oct 28th at 4pm
Hi all, this is a challenge that many of us have to manage. Please join us for this participative webinar Register > http://bit.ly/FatigueWebinar https://pic.twitter.com/44DMhhS46y Leukaemia Care are co – hosting this webinar with Lymphoma Action to support patients with understanding and managing
Hi all, this is a challenge that many of us have to manage. Please join us for this participative webinar Register > http://bit.ly/FatigueWebinar https://pic.twitter.com/44DMhhS46y Leukaemia Care are co – hosting this webinar with Lymphoma Action to support patients with understanding and managing
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
Novel and combination therapies for polycythemia vera and essential thrombocythemia: the dawn of a new era
« Promising novel agents in clinical testing include the histone deacetylase inhibitor givinostat, the telomerase inhibitor imetelstat, and the LSD-1 inhibitor IMG-7289 » https://www.tandfonline.com/doi/abs/10.1080/17474086.2020.1839887?journalCode=ierr20#.X45tb_0KltI.twitter
« Promising novel agents in clinical testing include the histone deacetylase inhibitor givinostat, the telomerase inhibitor imetelstat, and the LSD-1 inhibitor IMG-7289 » https://www.tandfonline.com/doi/abs/10.1080/17474086.2020.1839887?journalCode=ierr20#.X45tb_0KltI.twitter
Manouche
in
MPN Voice
4 years ago
Richter Transformation - Update
Hi everybody how are you? I'd like to put you all in my current state, after full remission. As you know, they treated me with R-CHOP and did not transplant me. It was not necessary as no masses were found on my body when I did the pet scan. I was taking ibrutinib when I was diagnosed with Ricther. I
Hi everybody how are you? I'd like to put you all in my current state, after full remission. As you know, they treated me with R-CHOP and did not transplant me. It was not necessary as no masses were found on my body when I did the pet scan. I was taking ibrutinib when I was diagnosed with Ricther. I
Priss69
in
CLL Support
4 years ago
How can you tell how many CLL cells are actually in your blood streams?
My Absolute Lymphocyte Count is at 10214 cells/mm³ is that CLL? I calculated my WBC 16.5 plus LYMPHS% 61.9 %...
My Absolute Lymphocyte Count is at 10214 cells/mm³ is that CLL? I calculated my WBC 16.5 plus LYMPHS% 61.9 %...
Laura3mini
in
CLL Support
4 years ago
Is there any information yet on the COVID-19 vaccines for post Bone Marrow Transplant patients?
I had my transplant in 2014 and have seen a few articles about the way the vaccines interact with the immune system.
I had my transplant in 2014 and have seen a few articles about the way the vaccines interact with the immune system.
colinparker1967
in
MPN Voice
4 years ago
1
...
59
60
61
...
100
Next page
20
30
40
50
60
70
80
90
100
Filter results
Clear filters
Posted in
All communities
CLL Support
1699 results
MPN Voice
870 results
PMRGCAuk
201 results
View top 10 communities
Sort by
Most Relevant
Newest