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Myeloma UK
United Kingdom
Registrace 7. 02. 2007
Myeloma UK is the only organisation dealing exclusively with myeloma and its related disorders in the UK.
For more information or to access information and support services, email mtv@myeloma.org.uk or call +44 (00) 131 557 3332.
www.myelomatv.org.uk
Myeloma Infoline 0800 980 3332
Charity No SC 026116
For more information or to access information and support services, email mtv@myeloma.org.uk or call +44 (00) 131 557 3332.
www.myelomatv.org.uk
Myeloma Infoline 0800 980 3332
Charity No SC 026116
Digital Infoday Session: Fatigue
Join us as we talk about the symptoms, causes, and treatment for fatigue in myeloma. Our speaker will discuss how to manage the physical, and psychological effects of fatigue, and provide advice on prevention and self-management.
zhlédnutí: 266
Video
Myeloma UK Strategy (2024-2028)
zhlédnutí 178Před 2 měsíci
Download and read our full 2024-2028 strategy and find out more about how it was developed and what the myeloma community told us mattered most to them: myeloma.org.uk/strategy
Digital Infoday Session: Ask our Infoline team
zhlédnutí 148Před 3 měsíci
Digital Infoday Session: Ask our Infoline team
Digital Infoday Session: Survivorship
zhlédnutí 356Před 7 měsíci
Join us as we talk about the long term effects of living with myeloma, focusing on the psychological impact. We’ll take you through some common issues faced by patients and offer helpful and practical tips.
Digital Infoday Session: Understanding test results
zhlédnutí 681Před 7 měsíci
Join us as we talk about what tests are for, and how they are undertaken. Our speaker will also discuss why you have particular tests and explain how to understand your results.
Introducing the Chapman-Livanos Survivorship Fellowship
zhlédnutí 383Před 7 měsíci
Former trustee and myeloma patient, Sir Frank Chapman tells us more about our new research project, the Chapman-Livanos Survivorship Fellowship. After suffering a heart attack last year, Sir Frank, who was a trustee at Myeloma UK for six years, has now teamed up with the George P. Livanos Foundation to fund the £100,000 research project. Led by Myeloma UK, the Chapman-Livanos Survivorship Fello...
Autumn Digital 2023: The power of the patient voice.
zhlédnutí 336Před 8 měsíci
Find out how Myeloma UK works to get new treatments approved on the NHS.
Our impact in 2022
zhlédnutí 103Před 9 měsíci
New hope starts here - a snapshot of our impact in 2022.
Growing hope event recording
zhlédnutí 250Před rokem
Myeloma UK CEO Sophie Castell, and award-winning garden designer, Chris Beardshaw celebrate and explain the story behind the ‘Myeloma UK - A Life Worth Living Garden’, which was kindly gifted to Myeloma UK by Project Giving Back. Hear about our highlights from our week at RHS Chelsea, including reflections from avid gardener, Fiona Smyth, who will talk about how gardening has helped her maintai...
Myeloma UK - A Life Worth Living Garden - RHS Chelsea Flower Show 2023
zhlédnutí 1,4KPřed rokem
In this video, you'll hear from myeloma patient Fiona about the peace and joy gardening brings her and the opportunity to create a special space. The Myeloma UK - A Life Worth Living Garden designer, Chris Beardshaw, discusses what the garden represents and how it was inspired by the experiences of the myeloma community.
Digital Infoday Session: Gastrointestinal Disturbances
zhlédnutí 595Před rokem
Join Myeloma UK and Nurse Consultant Craig Simon as we talk about gastrointestinal disturbances in myeloma treatment. We’ll cover why they happen and how to manage and relieve symptoms.
Chris Beardshaw on developing the design Myeloma UK - A Life Worth Living Garden
zhlédnutí 1,1KPřed rokem
Award winning garden designer Chris Beardshaw gives a unique insight into designing gardens for RHS Chelsea Flower Show and how Myeloma UK and the myeloma community influenced his designs. Read more about the garden at RHS Chelsea Flower Show 2023, generously gifted by Project Giving Back: www.myeloma.org.uk/news/myeloma-uk-garden-rhs-chelsea-flower-show-2023/
Digital Infoday Session: Steroids
zhlédnutí 824Před rokem
Join Myeloma UK and Dr Matthew Jenner as we talk about the use of steroids in myeloma treatment. We’ll cover what they are and why they are important. Our speaker will also discuss the potential side effects, how to manage these, and how steroids may impact pre-existing conditions.
Digital Infoday Session: AL amyloidosis: current treatments and future directions
zhlédnutí 1,3KPřed rokem
Listen to our expert talk about the possible symptoms and complications of AL amyloidosis and how they can be treated and managed. We will also cover the current research and future directions of this condition. Recorded Thursday 08 December 2022.
25 years of transforming lives together
zhlédnutí 261Před rokem
We've had a wonderful few weeks looking back over all the ways we've transformed lives together over the past 25 years. Since 1997 you've helped us: - quadruple life expectancy giving patients more time with their family and friends - get nine myeloma drugs into active use in over twelve different combinations - invest close to £19 million in innovative myeloma research -send out almost 2 milli...
25 Years of transforming lives together, and beyond
zhlédnutí 505Před rokem
25 Years of transforming lives together, and beyond
25 years of Myeloma UK - a new level of myeloma information and support
zhlédnutí 895Před rokem
25 years of Myeloma UK - a new level of myeloma information and support
Digital Infoday Session: MGUS: An Overview
zhlédnutí 4,3KPřed rokem
Digital Infoday Session: MGUS: An Overview
25 years of Myeloma UK: Helping patients manage life with myeloma
zhlédnutí 633Před rokem
25 years of Myeloma UK: Helping patients manage life with myeloma
25 years of Myeloma UK: Daratumumab approved because patients are heard
zhlédnutí 997Před rokem
25 years of Myeloma UK: Daratumumab approved because patients are heard
Digital Infoday Session: Myeloma bone disease
zhlédnutí 1,7KPřed rokem
Digital Infoday Session: Myeloma bone disease
Digital Infoday Session: Working and living with myeloma
zhlédnutí 840Před rokem
Digital Infoday Session: Working and living with myeloma
Digital Infoday Session: Living with uncertainty
zhlédnutí 832Před 2 lety
Digital Infoday Session: Living with uncertainty
Myeloma UK’s Translational Research Programme
zhlédnutí 653Před 2 lety
Myeloma UK’s Translational Research Programme
Myeloma UK Proteasome inhibitors in myeloma
zhlédnutí 6KPřed 2 lety
Myeloma UK Proteasome inhibitors in myeloma
Myeloma UK Autologous stem cell transplantation
zhlédnutí 21KPřed 2 lety
Myeloma UK Autologous stem cell transplantation
Treatment sounds worse than the cancer itself... That's why I've turned chem etc.
What are blood work indications of having multiple myeloma
As a certified Ayurvedic Practitioner I can say for sure that Planet Ayurveda's Boswellia Curcumin Capsules, Aamvatantak and Navkarshik Choorna works amazingly well. Removes toxins from the body and possesses immunomudulatory properties.
Gandhak Rasayan for Planet Ayurveda It improves the aura of the skin and improves the immune system as well. The formulation is prepared with purified sulphur or shuddha gandhak.
Hi what are the first sign of myeloma please, my gp has diagnosed with ploymyalgia rheumatic please can you help me what is the first test
Last year my mother aged 63 year old went through ASCT and now she is under maintenance therapy with linolidamide 10mg for 21 days and one week rest again repeated but now she is frequently suffering from anxiety, fatigue and constipation she is not fit as like she was well before transplant is there any other therapy in maintenance can be give like immunotherapy or some thing else with low side effects and fatigue after ASCT she has not given any immunizations what are the immunizations which she has to take
Planet Ayurveda’s treatment is amazing for Amyloidosis. It’s been a game-changer for me and my family
I have just been diagnosed with amyloidosis al. 2 weeks ago it's a wicked illness but listening to people it can go in to remission I have only just started my journey with this. But the video and comments make me feel a lot better. Chris.
After struggling with Amyloidosis, I found Planet Ayurveda. Their treatment is amazing and life-changing
This is such an amazing explanatory animation, it really nearly brought me to tears. Thanks 🔥✊🏾❤️
Thank you. I start the melphalan tomorrow and the transplant the day after. This was very helpful.
Respectfully I appreciate your amazing service #drallenben have always been able to help me with any kind of health issues, thanks for curing my herpes, I’m grateful I’m cured with your medication***..
Thank you soo muchh Ma'am for such a beautiful explanation with very nice animation..
Renal amyloidosis treatment btao please 🥺🥺
I have mgus and peripheral neuropathy. It’s awful trying to sleep. You feel like you’re being stabbed with hot pins, and I feel all kinds of weird sensations in my feet and hands.
Production ideas 😀
my husband and soulmate was dx in 2009. it eventually progressed into plasma cell leukemia. i lost him last year. i miss him dearly.
Awesome !
Ayurveda recognizes the role of stress in health challenges. Explore stress management techniques and herbal remedies from Planet Ayurveda medicine for individuals with Amyloidosis.
When taking Daratumumab, Velcade, Thalidomide and Dexamethasone look out for symptoms of peripheral neuropathy. I first noticed slight pins and needles going down my arms and legs. I thought nothing of it. It later developed into quite significant peripheral neuropathy. My Velcade and Thalidomide were stopped immediately. Maybe if I had told my consultant about the slight pins and needles I may have prevented the peripheral neuropathy becoming significant.
When you feel stimulated by the steroids make sure you don’t overdo physical activity because your bones will probably be fragile. I broke ribs and vertebrae being overactive.
Thank you I understand more about now 😊l am ready
Thank you to all the people who run support groups to help Myeloma sufferers 👍❤️
I am new to Research (myeloma study) and this information is helpful. Thank you!
Great information,thank you.
Do u have stem cells treatments of kidneys Regenerat ?
Having struggled with amyloidosis, I was skeptical about herbal treatments. However, after using Planet Ayurveda's medicine, I can confidently say that their approach has been a game-changer for me. Their supplements are well-crafted, and I've experienced a notable reduction in my symptoms. What impresses me the most is their commitment to using natural ingredients, ensuring safety and efficacy in managing amyloidosis.
En qué parte lo tienes
January 2022 I was diagnosed with IgG myeloma; ISS stage 3. At diagnosis my Paraprotein level was 79%(g/L). I started a treatment of Daratumumab, Velcade, Thalidomide and Dexamethasone. On my first cycle of Dara-VTD I suffered with pretty severe peripheral neuropathy. Velcade and Thalidomide were stopped. Daratumumab (with Dexamethasone) took my Paraprotein level to 0%. Daratumumab was amazing. I then had a bone marrow transplant which was just over a year ago. I have been told by my consultant that I will not be eligible for another bone marrow transplant, if and when I relapse. However, when I asked if I would be eligible for Car-t cell therapy he said I would be eligible, but that would only be possible if it were to be be approved for use by N.I.C.E. I live in hope. I am currently taking Lenalidomide as a maintenance therapy. My Paraprotein remains at 0%. My neuropathy continues. Thank you for sharing all this information. I don’t feel so alone.
It's easier to understand♡
Somehow I feel a little better knowing that I am not the only one who worries about this. Everyone should check out the research on curcumin done by Dr golombick in Australia reported on by healthtree foundation. Please look it up.
Low Dose Naltrexone has been mentioned as a possible treatment to slow MGUS progression. See LDN Research organisation.
Excellent.
I have MGUS and it’s been responsible for two bad vertebrae fractures.
In 2021 I started feeling pain on my ribs with COVID and 2022 again COVID a pain on my ribs and it was found that the paraproteina was raised and I was diagnosed with myeloma but there was a lesson on the ribs.i believe it is taking longer to diagnose patients.
I was diagnosed at age 50 not anemic, I went in to have my thyroid check ups. 8 years later it turned into myeloma
Were you Stationed at Camp Lejeune and at what year? Did you make you claim against the Navy? If not you can fill out an official Court Papers you find on the internet as I did. it is easy and simple but you must include MGUS on the paper as well. You must decide for yourself what you think your claim is worth. I personally put 250 thousand dollars.
Thanks ❤
Thanks a lot!
Thank you my sister for sharing
Two and half years of myeloma feel very good and happy ,every day say I CHOOSE TO LIVE .I CHOOSE LIFE AND MY BODY WILL RESPOND. find this very good for mental heath be positive and helpful ,eat organic fruit and veg .Anyone negative do not listen better things to do with your time, look forward ,set up white board put holiday dates birthdays etc .smile.
Couldn't agree more. Do stuff that you enjoy and that absorbs you - excellent philosophy!
Than you for sharing
Thank you
Thank you Dr. Not all Dr know about this pain. I have problem to explain to them.
Excellent and informative video - thank you. Hope you are doing well Andrew.
I’m being checked for MM - I dispensed petrol and paraffin for a couple of years when I was 15 - and was an air stewardess on early morning flights where fuel was always being loaded onto our HS 748s. It will be interesting if I do have it because I have never heard of the petrochemical connection.
How are u doing now buddy? well I hope Fellow sufferer
Anyone with multiple myeloma PLEASE look into the benefits of curcumin 🙏
Quit pedaling quackery and giving people false hope. Causing people to waste money chasing a lie. You should be ashamed of yourself.
@@wxman2003 RELAX. No one is "pedaling" anything. Did I write, curcumin cures cancer...NO. I said "look into curcumin's benefits", if that translated into something more for you, than that's your issue. I have multiple myeloma and use curcumin because many studies have proven it can help make chemo more effective and helps lower inflammation in the body, which is a big driver of cancer. The one who should be ashamed of themselves is YOU for your arrogance and ignorance.