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MF high risk Mutations
This has been covered in some form before. But I came across this report that summarizes misc info from Cornell in a nice clean manner. See link, it's easy reading. A specific takeaway is with the high risk (HMR) mutations in yellow here they lean toward SCT (stem cell transplant) if possible rather
This has been covered in some form before. But I came across this report that summarizes misc info from Cornell in a nice clean manner. See link, it's easy reading. A specific takeaway is with the high risk (HMR) mutations in yellow here they lean toward SCT (stem cell transplant) if possible rather
EPguy
in
MPN Voice
2 years ago
My father has Peripheral t cell lymphoma
My father has Peripheral t cell lymphoma of stage 4 Doctor started 6 cycles of CHOEP . Does Stem cell transplant is the permanent cure ?
My father has Peripheral t cell lymphoma of stage 4 Doctor started 6 cycles of CHOEP . Does Stem cell transplant is the permanent cure ?
NikhilSantosh
in
CLL Support
2 years ago
Off Tocilizumab after six months
I don't know where to start. My history will show I have GCA and PMR all diagnosed in 2019 after several misdiagnoses, and started treatment with Pred 15mg and then up to 25mg which helped the PMR and the GCA somewhat. I was then put on 20mg of Mexthetrate which did not agree with me. I change my
I don't know where to start. My history will show I have GCA and PMR all diagnosed in 2019 after several misdiagnoses, and started treatment with Pred 15mg and then up to 25mg which helped the PMR and the GCA somewhat. I was then put on 20mg of Mexthetrate which did not agree with me. I change my
redhouts
in
PMRGCAuk
2 years ago
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tocilizumab after relapse
Hi having felt unwell again and 8 weeks of steroids, reducing to zero I have had a positive ct pet scan again. Now back on steroids and a plan to commence lufludomine while consultant tries to get tocilizumab again. Has anyone had any luck with getting further scripts after relapse. Grateful for any
Hi having felt unwell again and 8 weeks of steroids, reducing to zero I have had a positive ct pet scan again. Now back on steroids and a plan to commence lufludomine while consultant tries to get tocilizumab again. Has anyone had any luck with getting further scripts after relapse. Grateful for any
Devoid
in
PMRGCAuk
2 years ago
Request - Real time experience Reco for the best haematologists in Portugal please
Hello all, Will move to Portugal in the near future. Looking for excellent haematologist recommendations in Portugal. I am hoping to get reco from people who have personally had positive experience with the said haematologists. Also the names of hospitals or institutes focusing on Hematology
Hello all, Will move to Portugal in the near future. Looking for excellent haematologist recommendations in Portugal. I am hoping to get reco from people who have personally had positive experience with the said haematologists. Also the names of hospitals or institutes focusing on Hematology
Iwillwin123
in
PMRGCAuk
2 years ago
MIN-102 update: summer 2022
Hi everyone, I am persisting with the min-102 trial and yesterday had my 10th visit. Nothing particularly different about the visit: the usual 6 minute walking and balance trials, the annual MRI scan and echocardiogram and the questionnaires and meeting with a specialist. What I did learn is that Minoryx
Hi everyone, I am persisting with the min-102 trial and yesterday had my 10th visit. Nothing particularly different about the visit: the usual 6 minute walking and balance trials, the annual MRI scan and echocardiogram and the questionnaires and meeting with a specialist. What I did learn is that Minoryx
wilburlois15
in
AMN EASIER
2 years ago
will these hot flashes ever end ?
Hi all I am grateful that after 19 months since i developed pmr symptoms I am feeling a lot better and have gradually reduced over the months from 30 mg (think gp went a bit over the top with that dose because i was on 25 and when i reported some blurred vision and headache she upped it . I saw optician
Hi all I am grateful that after 19 months since i developed pmr symptoms I am feeling a lot better and have gradually reduced over the months from 30 mg (think gp went a bit over the top with that dose because i was on 25 and when i reported some blurred vision and headache she upped it . I saw optician
Mofred
in
PMRGCAuk
2 years ago
Wellness poster for my stay at hospital
I am due to have a stem cell transplant and have prepared myself for my stay at the hospital. It’s been suggested that I can decorate my room and can use posters to put on the wall. I wonder if anyone could suggest somewhere online that they would know of that I could find any reasonably priced posters
I am due to have a stem cell transplant and have prepared myself for my stay at the hospital. It’s been suggested that I can decorate my room and can use posters to put on the wall. I wonder if anyone could suggest somewhere online that they would know of that I could find any reasonably priced posters
Kraskie1915
in
CLL Support
2 years ago
Sct question
Hello friends! I'm using Google translate now. I hope you will understand. I have a question that I can not find an answer to online. It's about stem cell transplantation. If this were to happen at some point in the future, how precise/exact does a match need to be? My parents have different ethnic
Hello friends! I'm using Google translate now. I hope you will understand. I have a question that I can not find an answer to online. It's about stem cell transplantation. If this were to happen at some point in the future, how precise/exact does a match need to be? My parents have different ethnic
Johan2021
in
MPN Voice
2 years ago
The Polymyalgia Rheumatica Diet: The Ultimate Nutritional Guide To Reversing And Managing Polymyalgia Rheumatica And Giant Cell Arteritis
Has anyone read this book by Hunwick Debby? Did they find it useful? Generally does your diet help improve your condition?
Has anyone read this book by Hunwick Debby? Did they find it useful? Generally does your diet help improve your condition?
Yorksman
in
PMRGCAuk
2 years ago
Transplant waiting list imminent/Nintedanib feedback
Hi all, Been a while again since my last update. I was hoping to bring you definitive news on the transplant situation but we're not quite there yet as I've still to meet the team to discuss when to go on the transplant list and find out how long my window of opportunity might be. However, the good
Hi all, Been a while again since my last update. I was hoping to bring you definitive news on the transplant situation but we're not quite there yet as I've still to meet the team to discuss when to go on the transplant list and find out how long my window of opportunity might be. However, the good
dodgylungrunner
British Lung Foundation
in
Lung Conditions Community Forum
2 years ago
Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. 2nd edition. By Kate Gilbert
Have you all read the above book by Kate Gilbert? It’s a must if you are a sufferer of PMR or GCA. So much sound practical information and we all know that knowledge is power. Good luck on your journey fellow sufferers. The light is at the end of the tunnel. XxX
Have you all read the above book by Kate Gilbert? It’s a must if you are a sufferer of PMR or GCA. So much sound practical information and we all know that knowledge is power. Good luck on your journey fellow sufferers. The light is at the end of the tunnel. XxX
SouthStrand
in
PMRGCAuk
2 years ago
Parietal Cell Antibody test refused by GP
I posted a few weeks back about my Dad who I suspect has b12 absorption problems either as a result of low stomach acid or PA. He tested negative for IF antibodies so zi asked a GP at his surgery if they would test for Parietal Cell antibodies. She didn't seem to know what I was talking about?! Said
I posted a few weeks back about my Dad who I suspect has b12 absorption problems either as a result of low stomach acid or PA. He tested negative for IF antibodies so zi asked a GP at his surgery if they would test for Parietal Cell antibodies. She didn't seem to know what I was talking about?! Said
Needleandthread44
in
Pernicious Anaemia Society
2 years ago
Encouraging Progress
Encouraging Progress in Stem Cell Transplantation . . . https://news.asu.edu/20220512-designer-neurons-offer-new-hope-treatment-parkinsons-disease
Encouraging Progress in Stem Cell Transplantation . . . https://news.asu.edu/20220512-designer-neurons-offer-new-hope-treatment-parkinsons-disease
redhawk1
in
Cure Parkinson's
2 years ago
World Blood Cancer Day May 28th
Please help promote knowledge about Blood Cancers and Stem Cell Transplant Matching. Help support the become a donor campaigns! Global event! Please see link for more information They have various downloads that can be used on social media like Facebook https://www.worldbloodcancerday.org/en/media
Please help promote knowledge about Blood Cancers and Stem Cell Transplant Matching. Help support the become a donor campaigns! Global event! Please see link for more information They have various downloads that can be used on social media like Facebook https://www.worldbloodcancerday.org/en/media
Dovme
in
MPN Voice
2 years ago
Bone marrow transplant
Hello, I am 60 years old. I have been struggling with AMN for over 35 years. I am wheelchair bound, but can still stand. My symptoms have been stable for many years. In a few weeks, I will be getting my first MRI in 30 years. I am afraid if the results are poor, I will have to get bone marrow transplant
Hello, I am 60 years old. I have been struggling with AMN for over 35 years. I am wheelchair bound, but can still stand. My symptoms have been stable for many years. In a few weeks, I will be getting my first MRI in 30 years. I am afraid if the results are poor, I will have to get bone marrow transplant
HenryW
in
AMN EASIER
2 years ago
Update on “20 years old and Scared”
Hey guys, roughly 11 months ago I posted in this group worried to death about my unspecified polycythemia diagnosis. You guys provided me with so much support during that time, even though I was a bit shy to respond to comments after a couple of days. Well, I was tested for the JAK2 gene which came back
Hey guys, roughly 11 months ago I posted in this group worried to death about my unspecified polycythemia diagnosis. You guys provided me with so much support during that time, even though I was a bit shy to respond to comments after a couple of days. Well, I was tested for the JAK2 gene which came back
Lc06091
in
MPN Voice
2 years ago
Map of Human Blood Stem Cell Development Created
ARTICLE https://www.insideprecisionmedicine.com/topics/precision-medicine-topic/stem-cells/map-of-human-blood-stem-cell-development-created/ : EXTRACTS Researchers at UCLA have created a detailed map of human blood cells and how they develop in an embryo, which could help improve treatments for blood-related
ARTICLE https://www.insideprecisionmedicine.com/topics/precision-medicine-topic/stem-cells/map-of-human-blood-stem-cell-development-created/ : EXTRACTS Researchers at UCLA have created a detailed map of human blood cells and how they develop in an embryo, which could help improve treatments for blood-related
bennevisplace
in
CLL Support
2 years ago
CAR T vaccine
GeoVax is conducting two Phase II COVID-19 vaccine clinical trials with its GEO-CMO4S1 vaccine. One of the trials is among immunocompromised patients who have been treated with CAR T therapy or have undergone bone marrow transplants. https://www.biospace.com/article/geovax-s-novel-vaccine-platform-induces-both-antibody-and-t-cell-responses
GeoVax is conducting two Phase II COVID-19 vaccine clinical trials with its GEO-CMO4S1 vaccine. One of the trials is among immunocompromised patients who have been treated with CAR T therapy or have undergone bone marrow transplants. https://www.biospace.com/article/geovax-s-novel-vaccine-platform-induces-both-antibody-and-t-cell-responses
Scout4answers
in
Advanced Prostate Cancer
2 years ago
What’s New in MS Research - March 2022
Thank you again to everyone who posted about and is discussing MSAA's latest edition of the "What's New in MS Research" report on our website! For those that don't know: this series of online articles is published periodically and features important information on topics ranging from highlights of major
Thank you again to everyone who posted about and is discussing MSAA's latest edition of the "What's New in MS Research" report on our website! For those that don't know: this series of online articles is published periodically and features important information on topics ranging from highlights of major
johnMSAA
Partner
in
My MSAA Community
2 years ago
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