Search
Search
About
Log in
Join
Experiences with
Cutaneous T cell lymphoma (CTCL)
Posts
Communities
1,658 public posts
Filter results
B vitamins query
Somebody mentioned Marmite for B vitamins; is the B9 in it the best form? I e , folate, as opposed to folic acid?
Somebody mentioned Marmite for B vitamins; is the B9 in it the best form? I e , folate, as opposed to folic acid?
Noelnoel
in
Thyroid UK
4 years ago
Advice and help please
Hi I was diagnosed 2 years ago with clear cell ovarian cancer and had 6 rounds of carbo taxol after a hysterectomy.I went to UCLH in london who discovered I did not have clear cell in March 2019 but germ cell yolk sac. I then needed more surgery and they found a new lesion that tested positive. Because
Hi I was diagnosed 2 years ago with clear cell ovarian cancer and had 6 rounds of carbo taxol after a hysterectomy.I went to UCLH in london who discovered I did not have clear cell in March 2019 but germ cell yolk sac. I then needed more surgery and they found a new lesion that tested positive. Because
NIKKibailie
in
My Ovacome
4 years ago
Visit to haematologist today
Hi everyone, hope all are well and coping with these difficult times. I had my dreaded visit today and the news was not as good as I had hoped. Looks like I will be treated with RChop. My bloods look pretty good to me. ALC 8.96. Absolute Neutrophil 4.93 Platelet count 190. This is the Australian figures
Hi everyone, hope all are well and coping with these difficult times. I had my dreaded visit today and the news was not as good as I had hoped. Looks like I will be treated with RChop. My bloods look pretty good to me. ALC 8.96. Absolute Neutrophil 4.93 Platelet count 190. This is the Australian figures
JanEyre
in
CLL Support
5 years ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
Sickle cell and endometriosis
Hi, I have been recently diagnosed with endometriosis and I have been slightly worried.... is there anyone in here that has sickle cell and endometriosis.... I have sickle cell trait from both of my parents. Thank you in advance for your answers and time.
Hi, I have been recently diagnosed with endometriosis and I have been slightly worried.... is there anyone in here that has sickle cell and endometriosis.... I have sickle cell trait from both of my parents. Thank you in advance for your answers and time.
Gabyp
in
Sickle Cell Society
5 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
5 years ago
Webinar - Coronavirus and acute leukaemia
Leukaemia Care will be joined by Dr Amit Patel, consultant in cellular therapies and stem cell transplantation, haematology and transplant unit from the Christie NHS foundation trust. Dr Patel will discuss the potential changes to your care as a result of the coronavirus outbreak as well as providing
Leukaemia Care will be joined by Dr Amit Patel, consultant in cellular therapies and stem cell transplantation, haematology and transplant unit from the Christie NHS foundation trust. Dr Patel will discuss the potential changes to your care as a result of the coronavirus outbreak as well as providing
HAIRBEAR_UK
in
Leukaemia Support
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
5 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
5 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
5 years ago
Change in blood results
HELLO MEMBERS OF CLL FORUM, I'm on IB now for a little over 2 month, and seeing my numbers are getting slightly better ......... except Platelet count still L 89 , should be 150-400 and Neutrophils 1.5, should be 2.0-8.0. Monocytes 0.0, should be 0.2-1.0 Do we have anyone who could give advice? Seeing
HELLO MEMBERS OF CLL FORUM, I'm on IB now for a little over 2 month, and seeing my numbers are getting slightly better ......... except Platelet count still L 89 , should be 150-400 and Neutrophils 1.5, should be 2.0-8.0. Monocytes 0.0, should be 0.2-1.0 Do we have anyone who could give advice? Seeing
Traudel
in
CLL Support
5 years ago
Confused /scared about Covid 19
Hi there I’m guessing that a lot of people are in the same boat about Covid19. My husband recently underwent a stem cell transplant for ALL and is now taking immunosuppressant medication. I currently work part time in the retail sector and I’m really confused and anxious about what to do for the best
Hi there I’m guessing that a lot of people are in the same boat about Covid19. My husband recently underwent a stem cell transplant for ALL and is now taking immunosuppressant medication. I currently work part time in the retail sector and I’m really confused and anxious about what to do for the best
Clarence45
in
Leukaemia Support
5 years ago
Government Advice on Coronavirus
In a nutshell...keep smiling. Government Advice in the UK as at 12th March 2020 · All people with flu-like symptoms – a fever above 37.8C or a persistent cough- should stay at home, away from other people, for seven days. · Schools should not take trips abroad. · Older people
In a nutshell...keep smiling. Government Advice in the UK as at 12th March 2020 · All people with flu-like symptoms – a fever above 37.8C or a persistent cough- should stay at home, away from other people, for seven days. · Schools should not take trips abroad. · Older people
Kevin53
in
LUPUS UK
5 years ago
FISH Results
I have stage 4 non Hodgkin lymphoma. Specifically, I have CLL/SLL. I got the FISH results back and they show 16% positive for deletion ATM. The report goes on to say “Deletion of ATM is associated with marked lymphadenopathy and rapid disease progression in chronic lymphocytic leukemia (CLL/SLL).” Can
I have stage 4 non Hodgkin lymphoma. Specifically, I have CLL/SLL. I got the FISH results back and they show 16% positive for deletion ATM. The report goes on to say “Deletion of ATM is associated with marked lymphadenopathy and rapid disease progression in chronic lymphocytic leukemia (CLL/SLL).” Can
DylanPxxx
in
CLL Support
5 years ago
Exceptional Response to Pembrolizumab in a Patient With Castration-Resistant Prostate Cancer With Pancytopenia From Myelophthisis: A Case Re
Praying this may be the answer for my husband who was just told 2 days ago that there's nothing to do, since his marrow isn't working after his 4th Xofigo treatment (see earlier posts below)!! https://www.medpagetoday.com/reading-room/asco/immunotherapy/80009 Exceptional Response to Pembrolizumab in
Praying this may be the answer for my husband who was just told 2 days ago that there's nothing to do, since his marrow isn't working after his 4th Xofigo treatment (see earlier posts below)!! https://www.medpagetoday.com/reading-room/asco/immunotherapy/80009 Exceptional Response to Pembrolizumab in
JLS1
in
Advanced Prostate Cancer
5 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
5 years ago
FISH Results
FISH Results: I have stage 4 non Hodgkin lymphoma. Specifically, I have CLL/SLL. I got the FISH results back and they show 16% positive for deletion ATM. The report goes on to say “Deletion of ATM is associated with marked lymphadenopathy and rapid disease progression in chronic lymphocytic leukemia
FISH Results: I have stage 4 non Hodgkin lymphoma. Specifically, I have CLL/SLL. I got the FISH results back and they show 16% positive for deletion ATM. The report goes on to say “Deletion of ATM is associated with marked lymphadenopathy and rapid disease progression in chronic lymphocytic leukemia
DylanPxxx
in
Non Hodgkin's Lymphoma Friends
5 years ago
MRD Testing after treatment. Help!
Is this good? Have to wait until tomorrow to actually speak to someone. Peripheral blood, flow cytometric immunophenotyping: Normal immunophenotyping results. No monotypic B-cell population identified. Comment: Minimal residual disease (MRD) analysis is intended to detect small clonal populations of
Is this good? Have to wait until tomorrow to actually speak to someone. Peripheral blood, flow cytometric immunophenotyping: Normal immunophenotyping results. No monotypic B-cell population identified. Comment: Minimal residual disease (MRD) analysis is intended to detect small clonal populations of
AuntHelen
in
CLL Support
5 years ago
Options other than transplant?
Hi, I'm new to the forum and was wondering if anybody has chosen not to go for stem cell transplant after getting good bone marrow results after the consolidation phase of chemo? I'm also struggling to find other people who have been diagnosed with A.L.L. in their 50s like me as it seems to usually bea
Hi, I'm new to the forum and was wondering if anybody has chosen not to go for stem cell transplant after getting good bone marrow results after the consolidation phase of chemo? I'm also struggling to find other people who have been diagnosed with A.L.L. in their 50s like me as it seems to usually bea
Gemini1967
in
Leukaemia Support
5 years ago
I have to withhold my tocilizumab
I was taken into hospital again with cellulitis on my leg put on intravenous antibiotics and am now at home on antibiotic tablets. This means that I have to withhold my tocilizumab. My concern is that if I have a flare what should I do. Increase my pred and by how much? I am now on 8mgms. Tried to reduce
I was taken into hospital again with cellulitis on my leg put on intravenous antibiotics and am now at home on antibiotic tablets. This means that I have to withhold my tocilizumab. My concern is that if I have a flare what should I do. Increase my pred and by how much? I am now on 8mgms. Tried to reduce
Teekay2
in
PMRGCAuk
5 years ago
Remission
So the PETSCAN and the bone marrow biopsy say no leukemia or lymphoma for me. That means total remission but they still want me to have a transplant waiting for an appointment from MD Anderson in Texas.
So the PETSCAN and the bone marrow biopsy say no leukemia or lymphoma for me. That means total remission but they still want me to have a transplant waiting for an appointment from MD Anderson in Texas.
SwiftT
in
CLL Support
5 years ago
1
...
28
29
30
...
83
Next page
10
20
30
40
50
60
70
80
Filter results
Clear filters
Posted in
All communities
CLL Support
554 results
PMRGCAuk
204 results
MPN Voice
131 results
View top 10 communities
Sort by
Most Relevant
Newest