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Shielding updates and Q&A, webinars for each UK country are now opening for registration
Good morning friends With imminent announcements of changes to shielding guidance and the different rates of implementation and advice given by the different UK countries. Leukaemia Care and sister charities are working with specialist haematologists in each country to support you through changes.
Good morning friends With imminent announcements of changes to shielding guidance and the different rates of implementation and advice given by the different UK countries. Leukaemia Care and sister charities are working with specialist haematologists in each country to support you through changes.
HAIRBEAR_UK
Administrator
in
CLL Support
4 years ago
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
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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An update on my tocilizumab experience.
Hello Everyone, from Downunder, I have now had my 12th jab of tocilizumab and my inflammatory markers have reduced to “normal” levels. I feel strong, full of energy and mentally positive for the first time in some months. My pred is down to 6.5mgs, Rheumatologist thinks I could reduce more rapidly,
Hello Everyone, from Downunder, I have now had my 12th jab of tocilizumab and my inflammatory markers have reduced to “normal” levels. I feel strong, full of energy and mentally positive for the first time in some months. My pred is down to 6.5mgs, Rheumatologist thinks I could reduce more rapidly,
LemonZest11
in
PMRGCAuk
4 years ago
Kate Gilbert’s book. Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition.
I just had to write to say how good this book is and I couldn’t recommend it more highly. I know many of you will already know it well but I’ve only just read it and apart from finding it full of useful information I was surprised at how enjoyable it was to read. I hadn’t bothered with it earlier in
I just had to write to say how good this book is and I couldn’t recommend it more highly. I know many of you will already know it well but I’ve only just read it and apart from finding it full of useful information I was surprised at how enjoyable it was to read. I hadn’t bothered with it earlier in
Seraphina56
in
PMRGCAuk
4 years ago
European Headache Federation recommendations for neurologists managing giant cell arteritis - 17 Mch 2020
I found this today which I hope is useful as it is very recent. https://thejournalofheadacheandpain.biomedcentral.com/articles/10.1186/s10194-020-01093-7?fbclid=IwAR1i7sx8Kt7LSlfbwdRfOCRBz9By1CN1ypVSHXPORkD4ownoa_pTCc2xj0M
I found this today which I hope is useful as it is very recent. https://thejournalofheadacheandpain.biomedcentral.com/articles/10.1186/s10194-020-01093-7?fbclid=IwAR1i7sx8Kt7LSlfbwdRfOCRBz9By1CN1ypVSHXPORkD4ownoa_pTCc2xj0M
Sefu
in
PMRGCAuk
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
Less than satisfactory telephone consultation
Hi all , after singing the praises of the dentist last week I have had a very disappointing consultant appointment today. Firstly it wasn’t a consultant but one of the team. Having discussed my medication and health, he went off to discuss with the consultant that I had stopped the methotrexate. He came
Hi all , after singing the praises of the dentist last week I have had a very disappointing consultant appointment today. Firstly it wasn’t a consultant but one of the team. Having discussed my medication and health, he went off to discuss with the consultant that I had stopped the methotrexate. He came
Devoid
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
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
Calquence Headaches and Low Blood Counts?
Hello!! I am writing on behalf of my dad. He was diagnosed with Mantle Cell Lymphoma in October 2019, he is 76 years old. He went through 5 months of chemotherapy (R-DHAP) and was deemed to be in remission from a PET scan. He was about to prep for stem cell transplant... however, they found some more
Hello!! I am writing on behalf of my dad. He was diagnosed with Mantle Cell Lymphoma in October 2019, he is 76 years old. He went through 5 months of chemotherapy (R-DHAP) and was deemed to be in remission from a PET scan. He was about to prep for stem cell transplant... however, they found some more
stonefilly
in
Non Hodgkin's Lymphoma Friends
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
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
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
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
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
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
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