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PBC and stem cells
Hello- I am newly diagnosed with PBC and am curious if anyone here has done a stem cell transplant to reverse/treat your PBC,?
Hello- I am newly diagnosed with PBC and am curious if anyone here has done a stem cell transplant to reverse/treat your PBC,?
K-nirk
in
PBCers Organization
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
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
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Face masks - recommendations?
My husband is still recovering from a stem cell transplant earlier this year and will need to shield until end of July. I have to go back to work next week. I work in a supermarket and although they say they have social distancing measures in place, they are not always followed. I want to invest in some
My husband is still recovering from a stem cell transplant earlier this year and will need to shield until end of July. I have to go back to work next week. I work in a supermarket and although they say they have social distancing measures in place, they are not always followed. I want to invest in some
Clarence45
in
Positive Wellbeing During Self-Isolation
4 years ago
New to site
Hi my story starts 2 yrs ago when I was diagnosed with an aggressive leukaemia for which I needed a stem cell transplant to survive,a year after transplant it was found that my thyroid had stopped working due to effects of chemotherapy,not sure if damage is permanent but the last year has been nearly
Hi my story starts 2 yrs ago when I was diagnosed with an aggressive leukaemia for which I needed a stem cell transplant to survive,a year after transplant it was found that my thyroid had stopped working due to effects of chemotherapy,not sure if damage is permanent but the last year has been nearly
Bate
in
Thyroid UK
4 years ago
A JEDI WARRIOR's TALE
Post by MPN-MATE Admin » Sun Jun 21, 2020 10:52 am Morning everyone... :-) I am feeling quite chuffed and privileged today as we have just had someone that has always inspired my own MPN journey, (join us here at MATES), by penning his arduous account of what is was like to go through the whole process
Post by MPN-MATE Admin » Sun Jun 21, 2020 10:52 am Morning everyone... :-) I am feeling quite chuffed and privileged today as we have just had someone that has always inspired my own MPN journey, (join us here at MATES), by penning his arduous account of what is was like to go through the whole process
socrates_8
in
MPN Voice
4 years ago
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
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
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
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
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
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
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