Search
Search
About
Log in
Join
Experiences with
Mast cell leukaemia
Posts
Communities
3,556 public posts
Filter results
Cll UK conflicting advice
Ok as I understand it the UK government has asked us with cll on chemo or inhibitors or stem cell ,BMT to self isolate for 12:weeks and have seen this as advice given in bloodwise . But thought I would phone my own hospital James Paget and my consultant secretary to see what there advice is and they
Ok as I understand it the UK government has asked us with cll on chemo or inhibitors or stem cell ,BMT to self isolate for 12:weeks and have seen this as advice given in bloodwise . But thought I would phone my own hospital James Paget and my consultant secretary to see what there advice is and they
cartwheels
in
CLL Support
4 years ago
Blurred vision - alternatives to Tocilizumab
One of our PMRGCAuk members has sent the following question: "My mother has GCA which unfortunately resulted in 50% sight loss across both eyes. She has been on Tocilizumab for about 8 months now, and her steroids have been gradually reduced to now nil. Initially, she was happy to be off the steroids
One of our PMRGCAuk members has sent the following question: "My mother has GCA which unfortunately resulted in 50% sight loss across both eyes. She has been on Tocilizumab for about 8 months now, and her steroids have been gradually reduced to now nil. Initially, she was happy to be off the steroids
Skinnyjonny
in
PMRGCAuk
4 years ago
Melatonin against platelets?
Dear all, Since I was given melatonin not for sleep, but to detox, I’ve been much better. I looked up effect of melatonin on platelets and I was shocked to find that melatonin caused platelet apoptosis (death). There are studies proving this. Here is info: https://www.sciencedirect.com/science/article
Dear all, Since I was given melatonin not for sleep, but to detox, I’ve been much better. I looked up effect of melatonin on platelets and I was shocked to find that melatonin caused platelet apoptosis (death). There are studies proving this. Here is info: https://www.sciencedirect.com/science/article
Anag
in
MPN Voice
4 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Mpn
A bit confused abnormal bmb all other tests ok though platelets still raised. Am about to start HYDROXYCARBAMIDE. After reading links people have suggested it says the drug is used to treat chronic leukaemia.Have i got leukaemia?.
A bit confused abnormal bmb all other tests ok though platelets still raised. Am about to start HYDROXYCARBAMIDE. After reading links people have suggested it says the drug is used to treat chronic leukaemia.Have i got leukaemia?.
glyndale
in
MPN Voice
4 years ago
Tagresso Treatment
Anyone being treated with Tagresso? I have EGFR mutation and am on the drug as first line of defense. I was a non smoker and diagnosed at stage four. The cancer is in my right lung and was on my vernacular vertebrae. At the five week scan the cancer on my back was gone and the tumors had 50% shrinkage
Anyone being treated with Tagresso? I have EGFR mutation and am on the drug as first line of defense. I was a non smoker and diagnosed at stage four. The cancer is in my right lung and was on my vernacular vertebrae. At the five week scan the cancer on my back was gone and the tumors had 50% shrinkage
celesteDeS
in
Lung Conditions Community Forum
4 years ago
COVID-19 Particularly Risky for CLL Patients
I must say, this article from Fred Hutch did nothing to brighten my day. But, it did make me wash my hands (yet again). According to Dr. Steve Pergam, clinical and infectious disease researcher at Fred Hutch, patients with hematologic malignancies are at greatest risk from COVID-19. Of course, CLL is
I must say, this article from Fred Hutch did nothing to brighten my day. But, it did make me wash my hands (yet again). According to Dr. Steve Pergam, clinical and infectious disease researcher at Fred Hutch, patients with hematologic malignancies are at greatest risk from COVID-19. Of course, CLL is
Lily_Pad_Master
in
CLL Support
4 years ago
LDH levels and myelofibrosis
So I have MF and my doctor is very pleased that my hemoglobin is stable at 10,9 for the last 6 weeks and my platelets are holding between 450 and 600. However, on Friday I went for my regular visit for lab work and my LDH shot up to almost 900, which it is very high for me. I’ve tried to find information
So I have MF and my doctor is very pleased that my hemoglobin is stable at 10,9 for the last 6 weeks and my platelets are holding between 450 and 600. However, on Friday I went for my regular visit for lab work and my LDH shot up to almost 900, which it is very high for me. I’ve tried to find information
Cja1956
in
MPN Voice
4 years ago
Stem Cell Transplant
My doctor says that after a 2nd remission, meaning after ibrutinib and venetoclax have failed that a stem cell transplant is the next option. I have been on IB for 14 months and it has been amazing but I am terrified about doing a stem cell transplant. Can someone share their experiences if you have
My doctor says that after a 2nd remission, meaning after ibrutinib and venetoclax have failed that a stem cell transplant is the next option. I have been on IB for 14 months and it has been amazing but I am terrified about doing a stem cell transplant. Can someone share their experiences if you have
steve_canada
in
CLL Support
4 years ago
“I had no immune system for months after my bone marrow transplant. Here’s how I avoided viral illness, and how you can, too.
“I had no immune system for months after my bone marrow transplant. Here’s how I avoided viral illness, and how you can, too. It’s easier than you think.” A.M. Carter Mar 22 · 12 min read https://medium.com/@amcarter/i-had-no-immune-system-for-months-after-my-bone-marrow-transplant-1b097f16040c
“I had no immune system for months after my bone marrow transplant. Here’s how I avoided viral illness, and how you can, too. It’s easier than you think.” A.M. Carter Mar 22 · 12 min read https://medium.com/@amcarter/i-had-no-immune-system-for-months-after-my-bone-marrow-transplant-1b097f16040c
hsouter
in
CLL Support
4 years ago
Acalabrutinib three weeks appointment
I don’t know where my previous post went. Very likely, I did something wrong, so here it goes. The only side effect was bad headache for one week after which it became dull and I don’t even need to take Tylenol. Some fatigue and less energy and that is all. 👍🏻 My results are: WBC low at 3.9,
I don’t know where my previous post went. Very likely, I did something wrong, so here it goes. The only side effect was bad headache for one week after which it became dull and I don’t even need to take Tylenol. Some fatigue and less energy and that is all. 👍🏻 My results are: WBC low at 3.9,
studebaker
in
CLL Support
4 years ago
Ann Ashley Leukaemia Counselling Fund
Are you seeking emotional support following diagnosis? We’re providing access to private counselling services through the provision of grants, so that leukaemia patients and their loved ones affected by a blood cancer diagnosis get the emotional and psychological support they need. https://youtu.be/EbVrqerdzXk
Are you seeking emotional support following diagnosis? We’re providing access to private counselling services through the provision of grants, so that leukaemia patients and their loved ones affected by a blood cancer diagnosis get the emotional and psychological support they need. https://youtu.be/EbVrqerdzXk
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
In extremely vulnerable group but don't understand why
On Monday I got a text, followed by a letter, informing me that I have been identified as someone at risk of severe illness and thereby extremely vulnerable if I were to catch coronavirus. Instructions are not to leave home, even for food and meds, and stay away from others indoors. There is a list of
On Monday I got a text, followed by a letter, informing me that I have been identified as someone at risk of severe illness and thereby extremely vulnerable if I were to catch coronavirus. Instructions are not to leave home, even for food and meds, and stay away from others indoors. There is a list of
Hidden
in
British Heart Foundation
4 years ago
MPN News for treatment primary myelofibrosis, post-PVMF, Post ET-MF and Primary myelofibrosis
Hello all. It has been a while but I wanted to share this latest info. The combination of panobinostat (Farydak) and ruxolitinib (Jakafi) demonstrated efficacy and a tolerable safety profile as a treatment for patients with primary myelofibrosis (PMF) and post-polycythemia vera–related myelofibrosis
Hello all. It has been a while but I wanted to share this latest info. The combination of panobinostat (Farydak) and ruxolitinib (Jakafi) demonstrated efficacy and a tolerable safety profile as a treatment for patients with primary myelofibrosis (PMF) and post-polycythemia vera–related myelofibrosis
mammared
in
MPN Voice
4 years ago
An Investigation into the Quality of Life and Dietary Behaviours of Young Adult Cancer Survivors
Hello friends are you able to help Toby with this survey? https://www.surveymonkey.co.uk/r/CKFTGL2 [i] "Hi my name is Toby and I am currently studying in my final year of BSc Sport and Exercise Nutrition at Hartpury University. I am reaching out to young adult cancer survivors between the age of 18
Hello friends are you able to help Toby with this survey? https://www.surveymonkey.co.uk/r/CKFTGL2 [i] "Hi my name is Toby and I am currently studying in my final year of BSc Sport and Exercise Nutrition at Hartpury University. I am reaching out to young adult cancer survivors between the age of 18
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
Analysing and Resequencing Gene Panels from the UK CLL4 trial (1999-2004) is helping patients today.
The CLL4 study compared conventional chlorambucil therapy versus fludarabine - alone or in combination with cyclophosphamide - note there was no Rituximab in those days. End points were: survival, response to therapy, duration of response, toxicity and quality of life. For patients who required further
The CLL4 study compared conventional chlorambucil therapy versus fludarabine - alone or in combination with cyclophosphamide - note there was no Rituximab in those days. End points were: survival, response to therapy, duration of response, toxicity and quality of life. For patients who required further
Jm954
Administrator
in
CLL Support
4 years ago
Unexplained Polycythemia
Hi there, I was just diagnosed with unexplained secondary polycythemia, I am negative for the JAK2 mutation but they haven't tested for Exon 12 yet. It seems they've done every test under the sun and cannot determine the cause of my polycythemia. It makes me wonder if I actually do have primary. I'm
Hi there, I was just diagnosed with unexplained secondary polycythemia, I am negative for the JAK2 mutation but they haven't tested for Exon 12 yet. It seems they've done every test under the sun and cannot determine the cause of my polycythemia. It makes me wonder if I actually do have primary. I'm
Confusedatpolycythem
in
MPN Voice
4 years ago
Acalabrutinib plus Obinutuzumab in Treatment-Naïve and Relapsed/Refractory CLL
Overall response rates were 95% (treatment-naïve) and 92% (relapsed/refractory). Thirty-two percent of treatment-naïve and 8% of relapsed/refractory patients achieved complete remission. At 36 months, 94% (treatment-naïve) and 88% (relapsed/refractory) were progression free. Acalabrutinib plus obinutuzumab
Overall response rates were 95% (treatment-naïve) and 92% (relapsed/refractory). Thirty-two percent of treatment-naïve and 8% of relapsed/refractory patients achieved complete remission. At 36 months, 94% (treatment-naïve) and 88% (relapsed/refractory) were progression free. Acalabrutinib plus obinutuzumab
Jm954
Administrator
in
CLL Support
4 years ago
Corona risk after successful treatment?
I am wondering about the state of the immune system after successful treatment for CLL. My husband's bone marrow was MRD-negative 6 months ago, all blood tests good apart from slightly low lymphocytes. He has been told to expect long term remission. Is he now as likely as the average person to contract
I am wondering about the state of the immune system after successful treatment for CLL. My husband's bone marrow was MRD-negative 6 months ago, all blood tests good apart from slightly low lymphocytes. He has been told to expect long term remission. Is he now as likely as the average person to contract
photohound
in
CLL Support
4 years ago
An Early Look at When CAR-T Therapy Fails Patients With CLL
Not exactly an optimistic report. Dr James Gerson, MD, - "Not a lot is known as to what happens in the patients for whom CAR-T therapy does not work,” “Anecdotally, we say that patients often progress rapidly and aren’t able to get further therapies, but it’s not something there’s a lot of data for.
Not exactly an optimistic report. Dr James Gerson, MD, - "Not a lot is known as to what happens in the patients for whom CAR-T therapy does not work,” “Anecdotally, we say that patients often progress rapidly and aren’t able to get further therapies, but it’s not something there’s a lot of data for.
Jm954
Administrator
in
CLL Support
4 years ago
Does Hydroxycarbamide make it take longer for you to recover from an infection?
Hi everyone! I'm new on this site and I'm interested in learning about the experiences of people with Essential Thrombocythaemia (ET). I was diagnosed with Janus Kinase 2 (JaK2)-positive ET about a year ago but only started on oral chemotherapy with Hydroxycarbamide (Hydroxyurea) a few weeks ago, as
Hi everyone! I'm new on this site and I'm interested in learning about the experiences of people with Essential Thrombocythaemia (ET). I was diagnosed with Janus Kinase 2 (JaK2)-positive ET about a year ago but only started on oral chemotherapy with Hydroxycarbamide (Hydroxyurea) a few weeks ago, as
JaK2ET
in
MPN Voice
4 years ago
1
...
71
72
73
...
100
Next page
30
40
50
60
70
80
90
100
Filter results
Clear filters
Posted in
All communities
CLL Support
1698 results
MPN Voice
865 results
PMRGCAuk
201 results
View top 10 communities
Sort by
Most Relevant
Newest