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Mast cell leukaemia
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Who s tried to get a blue badge with an advanced MPN
My wife is pushing me to apply to get a blue badge. My last pre transfusion Hb was 47 and I really thought that I was at risk of a severe superior mesenteric artey failure . Pre transfusion I did not eat for 4 days as anything in my stomach caused ischaemic symtoms which were only relieved by lying on
My wife is pushing me to apply to get a blue badge. My last pre transfusion Hb was 47 and I really thought that I was at risk of a severe superior mesenteric artey failure . Pre transfusion I did not eat for 4 days as anything in my stomach caused ischaemic symtoms which were only relieved by lying on
skodaguy
in
MPN Voice
4 years ago
Myelofibrosis - thank you for the support
A few days ago I posted about my new diagnosis of post ET Myelofibrosis and I just want to say thank you for all the responses and support I received. Without this forum I would feel quite lost. I'm feeling absolutely exhausted today, as if having my morning shower was enough exertion for one day. However
A few days ago I posted about my new diagnosis of post ET Myelofibrosis and I just want to say thank you for all the responses and support I received. Without this forum I would feel quite lost. I'm feeling absolutely exhausted today, as if having my morning shower was enough exertion for one day. However
Otterfield
in
MPN Voice
4 years ago
Night Sweats
I was diagnosed with CLL May of 2018. Still on wait & watch. I am 61. Over the last 40 years I would get periodic night sweats, very randomly. Once a year, then over the last 20 years, I would have a few night sweats year. Over the last 5 years, I get them a few days in a row, then nothing for months
I was diagnosed with CLL May of 2018. Still on wait & watch. I am 61. Over the last 40 years I would get periodic night sweats, very randomly. Once a year, then over the last 20 years, I would have a few night sweats year. Over the last 5 years, I get them a few days in a row, then nothing for months
CouldBworse
in
CLL Support
4 years ago
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CLL Expert Access 2nd Opinion from CLL Society from your home at no cost -unfortunately for USA Residents only
A CLL EXPERT PHYSICIAN CAN GIVE YOU A 2nd OPINION ONLINE AT NO COST TO YOU! APPLY NOW! • Easy to qualify • Easy to apply online • No need to leave your house https://cllsociety.org/cll-society-expert-access/ CLL Society Expert Access™ Program application: https://cllsociety.org/2019-expert-access-start
A CLL EXPERT PHYSICIAN CAN GIVE YOU A 2nd OPINION ONLINE AT NO COST TO YOU! APPLY NOW! • Easy to qualify • Easy to apply online • No need to leave your house https://cllsociety.org/cll-society-expert-access/ CLL Society Expert Access™ Program application: https://cllsociety.org/2019-expert-access-start
lankisterguy
Volunteer
in
CLL Support
4 years ago
Hibernation mode, painful hands and fuzzy eyesight.
Well as you can guess by the heading this is a bit of me at the moment. Probably not helping myself as I've been trying to do some embroidery at the moment in an effort to distract myself from other things namely the crazy itching. Maybe I'll get the sewing machines out and make myself some much needed
Well as you can guess by the heading this is a bit of me at the moment. Probably not helping myself as I've been trying to do some embroidery at the moment in an effort to distract myself from other things namely the crazy itching. Maybe I'll get the sewing machines out and make myself some much needed
Boudica1
in
LUPUS UK
4 years ago
Occasional sore tongue
It seems my tongue and sometimes the roof of my mouth feel like I burnt myself with a hot beverage when that is not the case. Sometimes brushing the area with my tooth brush seems to help. I’ve tried all sorts of toothpaste formulations. In can vary during the day and from day to day. I avoid any toothpastes
It seems my tongue and sometimes the roof of my mouth feel like I burnt myself with a hot beverage when that is not the case. Sometimes brushing the area with my tooth brush seems to help. I’ve tried all sorts of toothpaste formulations. In can vary during the day and from day to day. I avoid any toothpastes
Karenjaninaz
in
PMRGCAuk
4 years ago
Revolution of Chronic Lymphocytic Leukemia Therapy: the Chemo-Free Treatment Paradigm
February 2020 A long paper and too much information to be able to summarise in this post but a nice account of current treatments, response rates, trial details and issues of resistance/intolerance. "[i]Over the last years, targeted therapy with small molecule inhibitors and antibodies has much replaced
February 2020 A long paper and too much information to be able to summarise in this post but a nice account of current treatments, response rates, trial details and issues of resistance/intolerance. "[i]Over the last years, targeted therapy with small molecule inhibitors and antibodies has much replaced
Jm954
Administrator
in
CLL Support
4 years ago
Anyone diagnosed SM-AHN?
Jak2 and D816v CKit positive. Anyone dx with both mutations? Systemic Madtocytosis and Polycythemia Vera
Jak2 and D816v CKit positive. Anyone dx with both mutations? Systemic Madtocytosis and Polycythemia Vera
shaks
in
MPN Voice
4 years ago
ET progressed to Myelofibrosis
I was discharged from hospital yesterday, originally admitted with shortness of breath but was soon diagnosed with Myelofibrosis. It was a huge shock as my haematologist has repeatedly told me that my falling blood counts could not be MF as my WBC were falling. I was treated by a different consultant
I was discharged from hospital yesterday, originally admitted with shortness of breath but was soon diagnosed with Myelofibrosis. It was a huge shock as my haematologist has repeatedly told me that my falling blood counts could not be MF as my WBC were falling. I was treated by a different consultant
Otterfield
in
MPN Voice
4 years ago
Time-to-progression after front-line FCR for CLL: a retrospective, multicohort study
It has been known for some time that FCR can produce very long remissions (perhaps cures) for some patients with mutated CLL. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4760129/ This study looks at unmutated patients and could be an important study for CLL patients or, on the other hand, completely
It has been known for some time that FCR can produce very long remissions (perhaps cures) for some patients with mutated CLL. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4760129/ This study looks at unmutated patients and could be an important study for CLL patients or, on the other hand, completely
Jm954
Administrator
in
CLL Support
4 years ago
Join us and spread the word about the symptoms of leukaemia
'We may be living in uncertain times, but there is one thing we are certain of: awareness of leukaemia needs to be dramatically improved.' Each year we reach millions of people with our spot leukaemia campaign but despite our efforts, awareness of blood cancer amongst the public, as well as in primary
'We may be living in uncertain times, but there is one thing we are certain of: awareness of leukaemia needs to be dramatically improved.' Each year we reach millions of people with our spot leukaemia campaign but despite our efforts, awareness of blood cancer amongst the public, as well as in primary
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
Treating Asymptomatic Patients With Polycythemia Vera
Jerry L. Spivak, MD, discusses treating patients with polycythemia vera, which is a type of myeloproliferative neoplasm that can often derive from essential thrombocythemia, particularly among women. https://www.targetedonc.com/view/treating-asymptomatic-patients-with-polycythemia-vera
Jerry L. Spivak, MD, discusses treating patients with polycythemia vera, which is a type of myeloproliferative neoplasm that can often derive from essential thrombocythemia, particularly among women. https://www.targetedonc.com/view/treating-asymptomatic-patients-with-polycythemia-vera
Manouche
in
MPN Voice
4 years ago
Do all novel drugs "clear" CLL cells in blood, lymph nodes and bone marrow?
Do all novel drugs (non-chemotherapy) "clear" CLL cells in blood, lymph nodes and bone marrow? Or perhaps some drugs clear CLL cells only in blood, but are unable to get into bone marrow?
Do all novel drugs (non-chemotherapy) "clear" CLL cells in blood, lymph nodes and bone marrow? Or perhaps some drugs clear CLL cells only in blood, but are unable to get into bone marrow?
mantana
in
CLL Support
4 years ago
When CLL Meets COVID-19
When CLL Meets COVID-19 CLL Society is pleased to share with you the preeminent Spanish physician Prof. Dr. Emili Montserrat’s excellent commentary, recently published in BLOOD, reviewing two large studies on SARS-Cov2 infections in CLL patients. Prof. Dr. Emili Montserrat is one of the most prestigious
When CLL Meets COVID-19 CLL Society is pleased to share with you the preeminent Spanish physician Prof. Dr. Emili Montserrat’s excellent commentary, recently published in BLOOD, reviewing two large studies on SARS-Cov2 infections in CLL patients. Prof. Dr. Emili Montserrat is one of the most prestigious
bkoffman
CLL CURE Hero
in
CLL Support
4 years ago
Omg how do some doctors get there degree
just taken my 15 yo daughter to doct as has history of low b12 and iron, her injections were stopped last year on a paediatrician advice and to monitor every 3 months which we have been doing and have stayed pretty stable even though she tested positive to parietal cell antibody, shes been complaining
just taken my 15 yo daughter to doct as has history of low b12 and iron, her injections were stopped last year on a paediatrician advice and to monitor every 3 months which we have been doing and have stayed pretty stable even though she tested positive to parietal cell antibody, shes been complaining
sbadd
in
Pernicious Anaemia Society
4 years ago
Omg how do some doctors get a degree
just taken my 15 yo daughter to doct as has history of low b12 and iron, her injections were stopped last year on a paediatrician advice and to monitor every 3 months which we have been doing and have stayed pretty stable even though she tested positive to parietal cell antibody, shes been complaining
just taken my 15 yo daughter to doct as has history of low b12 and iron, her injections were stopped last year on a paediatrician advice and to monitor every 3 months which we have been doing and have stayed pretty stable even though she tested positive to parietal cell antibody, shes been complaining
sbadd
in
Thyroid UK
4 years ago
has anyone been on exjade
You can all see my post from 2 or so weeks ago. I knew shortly after my iron levels were elevated due to transfusions. Ferritin is also an inflammatory marker but my total iron combining capacity has also been rising steadily ( TIBC). I cannot reduce my transfusion dependency as I have gone down to 52
You can all see my post from 2 or so weeks ago. I knew shortly after my iron levels were elevated due to transfusions. Ferritin is also an inflammatory marker but my total iron combining capacity has also been rising steadily ( TIBC). I cannot reduce my transfusion dependency as I have gone down to 52
skodaguy
in
MPN Voice
4 years ago
CLL Society's October 10th Virtual Global Patient Educational Forum, featuring Dr. John Byrd speaking on Clinical Trials!
CLL Society's October 10th Virtual Global Patient Educational Forum, featuring Dr. John Byrd speaking on Clinical Trials! While Dr. John Byrd is well known for his clinical trials that have brought ground-breaking drugs to CLL and other blood cancers, he is equally well respected for always PUTTING PATIENTS
CLL Society's October 10th Virtual Global Patient Educational Forum, featuring Dr. John Byrd speaking on Clinical Trials! While Dr. John Byrd is well known for his clinical trials that have brought ground-breaking drugs to CLL and other blood cancers, he is equally well respected for always PUTTING PATIENTS
bkoffman
CLL CURE Hero
in
CLL Support
4 years ago
Ntpobnp blood test
Hi all. I had a bone marrow transplant 2 years ago. It put stress on my heart. Last week i had a echocardiogram which has come back good!!! Though my bnp level is 600... i am 38. So too high. My consultant is not worried though. Does this sound right?? Does a high bnp always mean heart failure? Back
Hi all. I had a bone marrow transplant 2 years ago. It put stress on my heart. Last week i had a echocardiogram which has come back good!!! Though my bnp level is 600... i am 38. So too high. My consultant is not worried though. Does this sound right?? Does a high bnp always mean heart failure? Back
Jalola
in
British Heart Foundation
4 years ago
Hi, I'm 20 years old. I have sickle cell disorder. But what bothers me most is that my eyes is always yellow, and it makes me feel shy.
I try to always drink water but most times drinking water makes me feel nauseated. I don't know why?
I try to always drink water but most times drinking water makes me feel nauseated. I don't know why?
Claregie
in
Sickle Cell Society
4 years ago
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