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Mantle cell lymphoma (MCL)
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Shielding updates and Q&A, the webinars for each UK country are now opening for registration
Good morning With imminent announcements about government shielding guidance and the different rates of implementation and advice given by the different UK countries. Leukaemia Care are working with specialist haematologists in each country to support you through changes. Each webinar will update
Good morning With imminent announcements about government shielding guidance and the different rates of implementation and advice given by the different UK countries. Leukaemia Care are working with specialist haematologists in each country to support you through changes. Each webinar will update
HAIRBEAR_UK
in
Leukaemia Support
4 years ago
Giant Cell Arteritis
Hi, can someone help with describing what the double vision element is with GCA? Most of the time my eye sight feels ok... except at certain distances say watching a game of football I see two copies of the player.. if I close one eye it’s ok! Also when driving I don’t necessarily see two cars as I wouldn
Hi, can someone help with describing what the double vision element is with GCA? Most of the time my eye sight feels ok... except at certain distances say watching a game of football I see two copies of the player.. if I close one eye it’s ok! Also when driving I don’t necessarily see two cars as I wouldn
Hidden
in
PMRGCAuk
4 years ago
Stem cell transplant anniversary
It is now exactly 12 months almost to the minute since I watched the bag of stem cells slowly drain into the Hickman line. It's been a very eventful 12 months to say the least. Since my last post 9 months ago I had a difficult end to 2019. I was hospitalised for pneumonia in October which turned out
It is now exactly 12 months almost to the minute since I watched the bag of stem cells slowly drain into the Hickman line. It's been a very eventful 12 months to say the least. Since my last post 9 months ago I had a difficult end to 2019. I was hospitalised for pneumonia in October which turned out
Dodders
in
MPN Voice
4 years ago
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Difficulty concentrating???
I had a hemorrhagic stroke in 2017 followed by my NHL diagnosis in 2018 & treatment with Rituximab. Ever since I've noticed a shift in my cognitive abilities especially with concentrating and comprehension. Anyone else had that experience? What did you do about it?
I had a hemorrhagic stroke in 2017 followed by my NHL diagnosis in 2018 & treatment with Rituximab. Ever since I've noticed a shift in my cognitive abilities especially with concentrating and comprehension. Anyone else had that experience? What did you do about it?
TigerM
in
Non Hodgkin's Lymphoma Friends
4 years ago
CLL - Extremely Vulnerable clarified
Previous posts have discussed the contentious issue of which CLL patients in the UK are classed as Extremely Vulnerable and are therefore eligible for government support. Members on watch and wait in Scotland have been excluded as they are not among those "who are at any stage of treatment". While few
Previous posts have discussed the contentious issue of which CLL patients in the UK are classed as Extremely Vulnerable and are therefore eligible for government support. Members on watch and wait in Scotland have been excluded as they are not among those "who are at any stage of treatment". While few
bennevisplace
in
CLL Support
4 years ago
Advice?
Newly diagnosed with PMR. Had a tapering dose of Prednisone (50mg x3 days, 40mg x 1 week, 30mg x 1 week and now on 20mg until I go back to Rheumatologist for follow up on May 27th). She proposed 3 medications to use for the future: Tocilizumab, Methotrexate or Hydrochloraquoin (sp?). I am interested
Newly diagnosed with PMR. Had a tapering dose of Prednisone (50mg x3 days, 40mg x 1 week, 30mg x 1 week and now on 20mg until I go back to Rheumatologist for follow up on May 27th). She proposed 3 medications to use for the future: Tocilizumab, Methotrexate or Hydrochloraquoin (sp?). I am interested
DianneRose409
in
PMRGCAuk
4 years ago
An account of a brain cell transplant
This stem cell transplant did not produce a cure but it is an interesting read to understand where the state of medicine is right now regarding a cure or at least a treatment for Parkinson's disease. https://www.statnews.com/2020/05/12/medical-first-parkinsons-brain-cell-transplant-stem-cells/
This stem cell transplant did not produce a cure but it is an interesting read to understand where the state of medicine is right now regarding a cure or at least a treatment for Parkinson's disease. https://www.statnews.com/2020/05/12/medical-first-parkinsons-brain-cell-transplant-stem-cells/
Zardoz
in
Cure Parkinson's
4 years ago
CAR-NK Cells Make Their Debut in Hematologic Cancers with Promising results
In this study, 11 patients with CD19-positive chronic lymphocytic leukemia (CLL) or non-Hodgkin lymphoma received the modified cells, known as chimeric antigen receptor-NK (CAR-NK) cells. Seven of the patients experienced complete remission, while in 1 other patient, treatment reduced the aggressiveness
In this study, 11 patients with CD19-positive chronic lymphocytic leukemia (CLL) or non-Hodgkin lymphoma received the modified cells, known as chimeric antigen receptor-NK (CAR-NK) cells. Seven of the patients experienced complete remission, while in 1 other patient, treatment reduced the aggressiveness
Jm954
Administrator
in
CLL Support
4 years ago
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
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
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
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
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
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
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
4 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
4 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
4 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
4 years ago
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