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MDS UK Patient Support Group
United Kingdom
Приєднався 26 жов 2016
MDS UK Patient Support Group
(Please note - this is a new UA-cam channel for MDS UK. The previous one will be deleted shortly)
This is the official You Tube channel for the Patient Support group for the rarer blood cancer MDS Myelo-Dysplastic Syndromes. Please also visit our website for more information: www.mdspatientsupport.org.uk.
As a patient diagnosed with MDS, or someone caring for an MDS patient, do join us as a member, to receive an information pack, receive regular monthly news and take part in our virtual patient meetings on Zoom.
We look forward to welcome you.
Support, Information, Awareness and Campaigns for MDS patients and families
Myelodysplastic Syndromes - Rare blood cancer
www.mdspatientsupport.org.uk
Tel 0207 7337558
(Please note - this is a new UA-cam channel for MDS UK. The previous one will be deleted shortly)
This is the official You Tube channel for the Patient Support group for the rarer blood cancer MDS Myelo-Dysplastic Syndromes. Please also visit our website for more information: www.mdspatientsupport.org.uk.
As a patient diagnosed with MDS, or someone caring for an MDS patient, do join us as a member, to receive an information pack, receive regular monthly news and take part in our virtual patient meetings on Zoom.
We look forward to welcome you.
Support, Information, Awareness and Campaigns for MDS patients and families
Myelodysplastic Syndromes - Rare blood cancer
www.mdspatientsupport.org.uk
Tel 0207 7337558
'Coping with a diagnosis of MDS or CMML' - a presentation by Ms Surabhi Chaturvedi
Surabhi Chaturvedi is the senior psychotherapist and service lead for the Haemato-Oncology psychological support team at King's College Hospital, London. Surabhi discusses the emotional impact of a diagnosis of MDS or CMML.
Topics covered in the video presentation below include:
Everyone is different and at different places
Adjusting to the diagnosis
Worry, stress and anxiety are normal
Myths and false expectations of emotional well being
Exploring self compassion
Ways of coping with uncertainty
Softening our beliefs
The importance of peer support
Where to get help
Topics covered in the video presentation below include:
Everyone is different and at different places
Adjusting to the diagnosis
Worry, stress and anxiety are normal
Myths and false expectations of emotional well being
Exploring self compassion
Ways of coping with uncertainty
Softening our beliefs
The importance of peer support
Where to get help
Переглядів: 95
Відео
Professor Vyas speaking about Azacitidine at a MDS UK support meeting - recorded 16th Feb 2024
Переглядів 822 місяці тому
Professor Vyas from Oxford Teaching Hospitals spoke about Azacitidine at a recent MDS UK support meeting.
A presentation by Dr Matt Poynton on blood transfusions for MDS patients
Переглядів 1462 місяці тому
Dr Matt Poynton talks to MDS UK Support about blood transfusions This excerpt, featuring Dr Matt Poynton of Oxford University Hospitals NHS Foundation Trust, is from a longer presentation he gave at a recent support meeting, and explains the complexities and processes involved in assessing who needs transfusions and how much/how often. It also highlights the impact severe anaemia can have on MD...
Dr Beth Payne - Stem cell transplantation - 2024
Переглядів 2234 місяці тому
Dr Beth Payne - Stem cell transplantation - 2024
'Latest Developments in MDS diagnostics & treatments' by consultant haematologist Dr Beth Payne
Переглядів 5515 місяців тому
This is a recording of a presentation that consultant haematologist, Dr Beth Payne, gave to the MDS UK Patient Support Group about the latest developments in diagnostics & treatments for MDS in July 2023. Dr Payne is a consultant haematologist at UCLH who specialises in the treatment of MDS and bone marrow failure. The presentation covers -some recent changes in diagnostics for MDS -new agents ...
Dr Shireen Kassam - Lifestyle medicine for improving health and well-being
Переглядів 99910 місяців тому
Dr. Shireen Kassam, a consultant haematologist at King's College Hospital, London, gives a 35-minute introduction to evidence-based Lifestyle Medicine. She explores how it can empower individuals living with MDS and cancer, offering practical actions to enhance health and well-being. Dr Shireen Kassam, MB BS, FRCPath, PhD, DipIBLM, is a consultant haematologist and Honorary Senior Lecturer at K...
CMML - Diagnosis & Treatment :a presentation by consultant haematologist Dr. Daniel Wiseman
Переглядів 4,1 тис.Рік тому
Dr Daniel Wiseman is an Honorary Consultant Haematologist at The Christie NHS Foundation Trust, Manchester who has great expertise in treating patients with CMML. This is a Zoom presentation he gave called 'Perspectives on CMML: Diagnosis & Treatment.' The presentation is followed by Q&As between Dr Wiseman and a group of patients. The session was chaired by Chris Dugmore, Essex Group Coordinat...
Low-risk MDS & the 'Repair MDS' Clinical Trial
Переглядів 471Рік тому
A recording of a well attended zoom meeting on 27th January 2023 with Dr Manoj Raghavan & colleagues discussing the Repair MDS clinical trial with a large group of MDS UK patients. The main speakers give fascinating talks on the details of the 'Repair MDS trial' for Low-risk MDS patients. The topics included: the current treatment options for Low-Risk MDS, a description of the 'Repair MDS' clin...
Understanding QoL (Quality of life) in High-Risk MDS & AML
Переглядів 160Рік тому
On December 15th 2022, Dr Pramila Krishnamurthy, consultant haematologist at King's College Hospital, London and her colleagues Dr Beth Payne, consultant haematologist at UCLH, and Dr Ian Thomas, Research Fellow in the Blood Cancer group, Cardiff University, led this valuable session introducing their research project on QoL (Quality of Life ) in High-Risk MDS & AML to a group of MDS UK patient...
Low risk MDS: Consultant haematologist, Dr Dominic Culligan, led this informative session for MDS UK
Переглядів 1,4 тис.Рік тому
Description On November 21st 2022, Dr Dominic Culligan, consultant haematologist at Aberdeen Royal Infirmary, led this invaluable session packed with information on Low risk MDS, to a large group of MDS UK patients. The session was chaired by Maureen Sturrock, Local Patient Support Ambassador for Scotland and Chris Dugmore, Essex Group Coordinator, Volunteer & Volunteer Coordinator. The present...
Stem Cell Transplantation: A session with MDS UK Patients and specialists from King's hospital.
Переглядів 4642 роки тому
On August 25th 2022, Dr Victoria Potter, Consultant Haematologist & Michelle Kenyon, Clinical Nurse Specialist, from King’s College Hospital, lead a session on stem cell transplantation to a large group of MDS UK patients. This is a recording of this fantastically, valuable session The session starts with an overview of the issues involved in stem cell transplantation followed by a Q&A between ...
MDS UK Regional Support Groups What are the practical aspects of setting up a Support group
Переглядів 292 роки тому
Sophie Wintrich, Chief Executive, MDS UK Patient Support Group with Claudia Richards , Oxford group Co-ordinator and Chris Dugmore, Essex Group Co-ordinator
MDS UK Regional Support Groups What are the benefits of attending Local Support Group meetings
Переглядів 132 роки тому
Sophie Wintrich, Chief Executive, MDS UK Patient Support Group with Claudia Richards , Oxford group Co-ordinator and Chris Dugmore, Essex Group Co-ordinator
MDS UK Regional Support Groups How did the Oxford and Essex groups start and develop
Переглядів 132 роки тому
Sophie Wintrich, Chief Executive, MDS UK Patient Support Group with Claudia Richards , Oxford group Co-ordinator and Chris Dugmore, Essex Group Co-ordinator
MDS UK Regional Support Groups How was Your First experience of visiting an MDS Local Support Group
Переглядів 252 роки тому
Sophie Wintrich, Chief Executive, MDS UK Patient Support Group with Claudia Richards , Oxford group Co-ordinator and Chris Dugmore, Essex Group Co-ordinator
MDS UK Regional Support Groups The benefits of support meetings for patients and caregivers
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MDS UK Regional Support Groups The benefits of support meetings for patients and caregivers
Benefits of support groups - A clinician’s perspective
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Benefits of support groups - A clinician’s perspective
Care and treatment of CMML - Interview with expert Dr Dan Wiseman, The Christie NHS Foundation Trust
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Care and treatment of CMML - Interview with expert Dr Dan Wiseman, The Christie NHS Foundation Trust
Familial MDS and AML more common than you think
Переглядів 322 роки тому
Familial MDS and AML more common than you think
Towards optimal transfusion in low risk MDS
Переглядів 262 роки тому
Towards optimal transfusion in low risk MDS
Molecular Diagnostics in MDS, a glimpse into research at Oxford
Переглядів 122 роки тому
Molecular Diagnostics in MDS, a glimpse into research at Oxford
Myeloid Gene panels - how are they used in MDS
Переглядів 1112 роки тому
Myeloid Gene panels - how are they used in MDS
UK MDS Forum Education Day Monday 5th November 2018
Переглядів 92 роки тому
UK MDS Forum Education Day Monday 5th November 2018
Patron Caitlin Limmer Cabbage Patch 10 Mile Race 2018
Переглядів 292 роки тому
Patron Caitlin Limmer Cabbage Patch 10 Mile Race 2018
Russell Cook Cabbage Patch 10 Mile 2018
Переглядів 52 роки тому
Russell Cook Cabbage Patch 10 Mile 2018
Owain Wilkins Cabbage Patch 10 Mile Race 2018
Переглядів 222 роки тому
Owain Wilkins Cabbage Patch 10 Mile Race 2018
Cabbage Patch Race and a Surprise all for MDS Awareness Day 2018
Переглядів 32 роки тому
Cabbage Patch Race and a Surprise all for MDS Awareness Day 2018
Make Blood Cancer Visible 2018 Installation
Переглядів 82 роки тому
Make Blood Cancer Visible 2018 Installation
BBC Wales evening news Make Blood Cancer Visible 2018
Переглядів 572 роки тому
BBC Wales evening news Make Blood Cancer Visible 2018
Make Blood Cancer Visible The Patient Stories
Переглядів 262 роки тому
Make Blood Cancer Visible The Patient Stories
So I have a weird question my family is from Manchester I’m in the states and my whole monocyte count has been a 13% for over 9 months on my labs how worried should I be I was till I have pv but i stay in a constant state of a mild cold sneezing cold sweats with exertion consistently in have white chalky streaking in 3 of the nails in my right hand that consistently comes back sign of anemia I’m told
You will have the best care. They have a lot of clinical trials as well. Wish you the best
Incredible, I'm in good shape, I'll sign up. 70, 135 lbs, exercise 3xweek since age 16, eat organic am vegetarian for 20(+) years. Happily married 50 years next year
Hello there, I have analyzed your UA-cam Channel and found some problems. Do you want to talk about it for a while?
Your content is really good ,But your channel growth is very poor and video views are very low. Already I have seen many lacking's like no proper SEO, Description, Title, optimization . That's why you didn't get expected video views.
Thanks for sharing this video, very knowledgeable
You are doing great and the content is awesome Carry on dear,
I enjoyed listening. I have been a MDS patient at MD Anderson since March 2017. Sometimes this seems like a lonely journey and I am hoping to find more information on UA-cam.
I head to MD Anderson next week after initial diagnosis of MDS by my local doctor. Wishing you the best.
Interesting to realise the connection between a general inflammatory response and the microbiome, epigenetics and cellular injury causes, which one hopes is being taught at Medical undergraduate level for advising patients
Just diagnosed with MDS I start chemotherapy next week I was just trying to learn a little more about what I have coming in my very near future ?
Hello, My father is diagnosed with CMML-1, in May-2023, he had gone through 2 cycle of Azacitadine, but the medicine didn't suits and he has severe pain in legs, we have to go through transfusion every 15 days, is there any treatment other than chemotherapy and stem cell transplant
Hello can you tell me where you're getting treatment for your brother?
@@ALOKRAWSINGHAM Currently, we are taking treatment from Mcleodganj
@@PRIYANKASHARMA-ey8bv Please Visit Rajiv Gandhi Cancer Institute, they can give proper medication
@@PRIYANKASHARMA-ey8bv please see a doctor in Delhi or Mumbai
Very informative as I have a Stem Cell transplant coming up in 2024.I developed a rare blood cancer called Mycosis Fungoides which is a T Cell Lymphoma and it is resistant to most treatment and at the aggressive stage too.
I was diagnosed with cmml-2 June 1 2023. (19%-20% bone marrow blasts and white blood cells). This week I learned that I am responding very well to my Azacitadine treatments. and the plan is to start reducing my treatments - trying to reach a stabilization level. Thank you for your research. This video is so helpful in helping me understand. I can't thank you enough. I am being treated by Dr Zeidner at Lienberger-Basnight Cancer Hospital, UNC Chapel Hill, NC.
Hello, I just wanted to know how you are responding to this chemotherapy please share your experience.
How are you doing now?
thank you for putting this video together .. i was diagnosed with cmml and ive learned alot about it in your video im doing treatment and then going for a stem cell transplant after my 4th round of chemo im takin 3 shots in my stomach 7 days in a row out of the month it is called vidasia Not sure i spelled it right and then 2 weeks on 2 weeks off of a pill called venclexta i started with the 100 mg tablet but i take 4 of them at once so 400 mg daily i must travel 3 hrs from home for my treatment towards the end of the month .you made this very easy to understand and ive watched lots of videos to understand .. thank you so much oh yea im 56 yrs old
Hello. I wish you health! My mom was diagnosed with cmml at 46 years. Doctor said that without transplantation she will die 😪 Did you transplant bone marrow? I hope it went well 🙏
Yes I had transplant on November 8th I’m still in treatment away from home for 100 days I’ll go home mid February but so far all is doing good I’m fully graphed and in remission thank you
@@DonnasJourneychitchat that's really awesome!
I've been diagnosed with cmml and wondering whether I should get a 2nd opinion especially as far as treatment is concerned. I'm on Hydrea 500 at moment and wondering whether there is perhaps a better/ more effective chemo drug. I'm 72 yrs old.
I was dx. with CMML stage 1 - 7 years ago, It only manifests by very low platelet counts which I take Promacta daily orally for. I have never needed any other type of treatment . I am an "outlier"
Hello. Did u have a transplantation of bone marrow?
@@marykeenan2282Hello, I really need an answer. Did you have a transplantation? How do you treat cmml😢 I wish you health
How are you doing, Michael?
@@ifucknlivemyideallifeStudies show that a bone marrow transplant carries a serious risk, usually resulting in the death of the cmml patient. I think you have to be in the best shape for it to have a chance at being successful.
How effective is Hydrea 500 as a treatment for cmml ?