Myeloma UKApr 23, 2025

Myeloma, or multiple myeloma, is a blood cancer arising from plasma cells.

Each year in the UK, approximately 6,200 people are diagnosed with myeloma.

At any one time, over 33,000 people are living with myeloma in the UK.

We are here to help you cope with everything a myeloma diagnosis brings. 🧡

International Myeloma FoundationApr 29, 2025

It is with great sadness that we share the passing of one of the IMF’s Board Members and longtime philanthropist John O’Dwyer, who lived with myeloma for 18 years until he peacefully passed this Sunday, April 27, surrounded by family and friends.

John O’Dwyer’s devotion to finding a cure for multiple myeloma was personal and passionate. He once said, “When I think of myeloma research, I always say ‘give me the best idea you have, and I’ll help fund it.’”

The International Myeloma Foundation is beyond grateful to John and his wife Dorothy for their unwavering support of the organization and the myeloma community as a whole. In John’s words, “Given the relatively small size of the myeloma community, each of us must play a part in seeking a cure.”

The IMF sends its deepest sympathies, thoughts, and prayers to John's family members, friends, colleagues, and loved ones. We encourage those members of the community who knew John to share your stories in social media posts.

Multiple Myeloma Research FoundationApr 23, 2025

In ONE week join us to learn about how CAR T-cell therapy works, how it's given to patients, and key side effects to be aware of.

You’ll have the opportunity to ask questions and get answers directly from top #myeloma experts during a Q&A session. Don’t wait—register today: https://ow.ly/1Fz950VBJvb

Multiple Myeloma Research FoundationApr 16, 2025

Anne Quinn Young, MPH, Chief Mission Officer at the Multiple Myeloma Research Foundation, gets answers to frequently asked questions on how to effectively communicate with your care team and optimize your care from MMRF founder Kathy Giusti and Patient Navigator Erin Mensching.

Ms. Young gets insights on effective communication from Ms. Giusti and Ms. Mensching on such topics as...

· How to maximize every appointment

· Getting a second opinion

· Key questions to ask

· How to get the most out of treatment while clearly communicating your personal goals and priorities

This session is supported by Adaptive, Bristol Myers Squibb, CURE, Genentech, Kite/Arcellx, Pfizer, and Sanofi.

If you have questions, call our MMRF Patient Navigation Center at 1-888-841-6673.

International Myeloma FoundationApr 18, 2025

What is CAR T-cell therapy, and how does it work to treat multiple myeloma? In this quick, easy-to-understand video, IMF Chief Medical Officer Dr. Joseph Mikhael breaks down the CAR T-cell therapy process in under one minute.

Myeloma UKApr 16, 2025

Spend the day with Aisling, our Health Psychology Masters Student to see what she gets up to whilst working with us 🧡

International Myeloma FoundationApr 15, 2025

Care partners need care too. Diane Kennedy, Todd Kennedy’s care partner, tells a story of the first time a myeloma doctor ever asked her how she was doing first. Free care partner resources: https://www.myeloma.org/caregivers-or-care-partners-myeloma-patients

Myeloma UKApr 12, 2025

Our Travel insurance and myeloma Infosheet includes companies that specialise in providing travel insurance to people with pre-existing medical conditions, recommended by people in the Myeloma UK community.

We're updating the Infosheet, so if you've had a positive experience using travel insurance for a holiday in the last three years, we'd love to hear from you!

Fill in our survey here: https://brnw.ch/21wRXj9

Multiple Myeloma Research FoundationApr 10, 2025

As more patients with #multiplemyeloma are living longer, survivorship has never been more important. Download our latest Fast Facts in Myeloma guide for expert tips on thriving after a #myeloma diagnosis. https://ow.ly/M6i650VvPwo

Survivorship is about embracing hope, empowering yourself to overcome challenges, and advocating for the life you want.

Myeloma UKApr 01, 2025

Our supporter, Hugh Henderson, recently underwent a head and eyebrow shave in memory of his wife, Anne, who passed away in 2024.

Anne volunteered for Myeloma UK for over fifteen years before she sadly passed away, baking and serving tea and coffee at the Perth Myeloma Support Group Meetings, even before she was diagnosed with myeloma herself. Hugh continues to attend this support group, which has encouraged him to do some fundraising.

We spoke to Hugh about his head shave and he said:

"I always thought to be a fundraiser you had to be able to run marathons, cycle and swim for miles. As a gentleman who is 91 years young, I wasn’t up for those types of fundraisers! After a visit from Myeloma UK fundraising team to the Support Group I realised perhaps there was something else I could do – a headshave.

I spoke to my hairdresser, Vicky, and she was happy to be involved and do the shaving for me. Vicky has been my hairdresser for the last 20 years and in that time she has been desperate to get her hands on my eyebrows! When I spoke to her about shaving my head, she said “and the eyebrows???” So, I had those trimmed off too.

The church that I am a member of suggested hosting a Coffee Morning at the church and having the headshave happen there on 1st February 2025 raising over £4k for Myeloma UK. We also had baskets on the tables for donations for the haematology department at the PRI and raised over £1400 for them too."

Hugh would also like to thank everyone involved in helping to make his fundraiser such a success. 🧡

We would love to hear about your fundraising ideas or plans – get in touch at fundraising@myeloma.org.uk 📩

International Myeloma FoundationApr 02, 2025

Is there a link between multiple myeloma and vitamin D deficiency? The short answer: Yes. IMF CMO Dr. Joseph Mikhael answers this question in the clip. #AsktheIMF#MyelomaMilestone"

Multiple Myeloma Research FoundationApr 01, 2025

💜 You Can Be a Hero Today! 💜

Turn your passion into purpose and help the MMRF accelerate a cure for #myeloma patients everywhere! Starting your own fundraiser is simple and meaningful—your way, your impact. Whether it’s a bake sale, a 5K in a tutu, golfing, or a karaoke showdown, the possibilities are endless.

✨ Step 1: Pick a fun way to raise funds

✨ Step 2: Set up your page (it’s easy!)

✨ Step 3: Rally your friends & change lives!

Visit https://ow.ly/bkEM50VrVuc to get started today!

Myeloma UKApr 01, 2025

Our supporter, Hugh Henderson, recently underwent a head and eyebrow shave in memory of his wife, Anne, who passed away in 2024.

Anne volunteered for Myeloma UK for over fifteen years before she sadly passed away, baking and serving tea and coffee at the Perth Myeloma Support Group Meetings, even before she was diagnosed with myeloma herself. Hugh continues to attend this support group, which has encouraged him to do some fundraising.

We spoke to Hugh about his head shave and he said:

"I always thought to be a fundraiser you had to be able to run marathons, cycle and swim for miles. As a gentleman who is 91 years young, I wasn’t up for those types of fundraisers! After a visit from Myeloma UK fundraising team to the Support Group I realised perhaps there was something else I could do – a headshave.

I spoke to my hairdresser, Vicky, and she was happy to be involved and do the shaving for me. Vicky has been my hairdresser for the last 20 years and in that time she has been desperate to get her hands on my eyebrows! When I spoke to her about shaving my head, she said “and the eyebrows???” So, I had those trimmed off too.

The church that I am a member of suggested hosting a Coffee Morning at the church and having the headshave happen there on 1st February 2025 raising over £4k for Myeloma UK. We also had baskets on the tables for donations for the haematology department at the PRI and raised over £1400 for them too."

Hugh would also like to thank everyone involved in helping to make his fundraiser such a success. 🧡

We would love to hear about your fundraising ideas or plans – get in touch at fundraising@myeloma.org.uk 📩

International Myeloma FoundationApr 02, 2025

Is there a link between multiple myeloma and vitamin D deficiency? The short answer: Yes. IMF CMO Dr. Joseph Mikhael answers this question in the clip. #AsktheIMF#MyelomaMilestone"

Multiple Myeloma Research FoundationApr 01, 2025

💜 You Can Be a Hero Today! 💜

Turn your passion into purpose and help the MMRF accelerate a cure for #myeloma patients everywhere! Starting your own fundraiser is simple and meaningful—your way, your impact. Whether it’s a bake sale, a 5K in a tutu, golfing, or a karaoke showdown, the possibilities are endless.

✨ Step 1: Pick a fun way to raise funds

✨ Step 2: Set up your page (it’s easy!)

✨ Step 3: Rally your friends & change lives!

Visit https://ow.ly/bkEM50VrVuc to get started today!

Multiple Myeloma Research FoundationMar 27, 2025

Since the MMRF was founded in 1998, we’ve made incredible progress. Multiple myeloma patients are living longer, with survival rates improving from only 3 years to over 10 years.

While we’re proud of these milestones, #myeloma is still an incurable disease, and our work is far from finished. We need your help to continue leading breakthroughs – give today: https://ow.ly/EalR50VpNqU

#MyelomaAwarenessMonth

Myeloma UKMar 29, 2025

Our supporter, Vanessa Ferrett, was diagnosed with myeloma in June last year and has since collaborated with friends, family and her local community to raise over £20,000 and counting.

We spoke to Vanessa about the various fundraising events and she said:

"Firstly, my son, who is obsessed with his hair, shaved his head - I set up a fundraising page and shared on my socials and he raised £5k.

Then a friend said she'd like to run 100km in September to raise more, so I shared this with a few friends and somehow managed to attract 52 runners to do the same. Between them, they ran, walked, and paddled over 6000km. As I didn't have the energy to do the same, I did 30 yoga classes instead. It was great and gave me such a boost at a difficult time.

Last week, another friend asked me to give her a buzz cut at our restaurant and she has raised nearly £5,000 on her page.

We had and still have a WhatsApp chat that we used to encourage and congratulate each other."

Thank you to Vanessa and her team of family and friends for their continued support! 🧡

If you're feeling inspired to arrange your own fundraising event, we would love to help. Get in touch here: https://brnw.ch/21wRF4T

International Myeloma FoundationMar 29, 2025

Myeloma patients are always facing battles, but we are here for you. Have you experienced side effects? How do you manage them? Share with #MyelomaMilestone to spread awareness! More about managing side effects: https://www.myeloma.org/multiple-myeloma-complications

Myeloma UKMar 19, 2025

We're proud to share our new video that explains who we are and what we do.

Please share and help raise awareness of our work! Thank you 🧡

International Myeloma FoundationMar 19, 2025

An amazing #MyelomaMilestone! Survival rates for myeloma have increased every single year since 2000. Let’s celebrate this achievement! Thank you to Johnson & Johnson for supporting

#myeloma research during #MyelomaActionMonth.

Multiple Myeloma Research FoundationMar 19, 2025

Chris Peña, Director of Education Programs at the Multiple Myeloma Research Foundation, gets answers to frequently asked questions on understanding myeloma test results from Dr. Benjamin Derman (Assistant Professor of Medicine, The University of Chicago), nurse practitioner Martha Hodges (The University of Chicago), and Pam Worth, a myeloma patient.

Dr. Derman, Ms. Hodges, and Ms. Worth provide insights on understanding your test results, including...

- 00:48 Blood tests

- 30:35 Bone Marrow Biopsy Test

- 51:25 Imaging

This session is supported by Adaptive, Amgen, Bristol Myers Squibb, CURE, Genentech, Kite/Arcellx, and Pfizer.

If you have questions, call our MMRF Patient Navigation Center at 1-888-841-6673.

International Myeloma FoundationMar 15, 2025

Got questions about multiple myeloma? Dr. Joseph Mikhael is here to help! Join us for a live session where he'll provide expert answers on myeloma care, research, and more. Ask your questions and be part of the conversation!

Join us for this exciting Myeloma Action Month event. #MyelomaMilestone

Myeloma UKMar 13, 2025

We are so pleased to finally share our full programme of Myeloma UK Infodays in 2025! 🧡

Our Infodays are designed to provide you with up-to-date information presented by experts.

We always ensure information is delivered in a way that is easy for everyone to understand, and there’s something for all levels of knowledge and stages of myeloma.

The Infodays consist of a series of presentations and workshops, as well as time for you to speak with other patients and their families.

All refreshments and lunch are included in the registration fee.

Find out more information and book your tickets here: https://brnw.ch/21wRix3

Multiple Myeloma Research FoundationMar 17, 2025

Imagine a world where multiple #myeloma isn’t just treatable—it’s curable. That's the future we at the MMRF are relentlessly working toward.

This #MyelomaAwarenessMonth, help us power groundbreaking initiatives that bring us one step closer to a cure.

Be part of something incredible and donate now at https://ow.ly/YeeV50VbsAZ

Multiple Myeloma Research FoundationMar 08, 2025

Together, we will create a world free of #multiplemyeloma 💪❤️🌎🩸

Drop a heart or encouraging message for those affected by #myeloma in the comment section below 👇

#MyelomaAwarenessMonth

Myeloma UKMar 13, 2025

We are so pleased to finally share our full programme of Myeloma UK Infodays in 2025! 🧡

Our Infodays are designed to provide you with up-to-date information presented by experts.

We always ensure information is delivered in a way that is easy for everyone to understand, and there’s something for all levels of knowledge and stages of myeloma.

The Infodays consist of a series of presentations and workshops, as well as time for you to speak with other patients and their families.

All refreshments and lunch are included in the registration fee.

Find out more information and book your tickets here: https://brnw.ch/21wRix3

International Myeloma FoundationMar 08, 2025

Symptoms are your warning signs—DON’T ignore them.

Consult your physician if you experience them & learn more MM symptoms here: https://www.myeloma.org/newly-diagnosed/do-you-have-myeloma What symptoms did you have at diagnosis? Share with #MyelomaMilestone. Thank you Sanofi for standing with the myeloma community!

Multiple Myeloma Research FoundationMar 01, 2025

🩸March is #MyelomaAwarenessMonth!🩸

Did you know that #multiplemyeloma makes up 1.8% of all new cancer cases in the U.S.? It’s a blood cancer that develops in plasma cells of the bone marrow. Plasma cells are transformed into cancerous cells that grow uncontrollably, crowding out healthy cells and producing M protein, an abnormal antibody.

#Myeloma is not thought to be a hereditary disease but is caused by certain genetic mutations that likely develop as we age, with the average age of diagnosis being 69.

Join us in spreading awareness! Learn about myeloma: https://themmrf.org/multiple-myeloma/

Myeloma UKFeb 27, 2025

We're delighted to share that two promising treatments have been given the green light in Scotland at second line and beyond.

Both treatments can be taken at home, which means far fewer trips to hospital.

Pomalidomide (Imnovid®) in combination with dexamethasone (PD) and pomalidomide in combination with bortezomib (Velcade®) and dexamethasone (PVD) have both been approved by the National Cancer Medicines Advisory Group (NCMAG).

Scotland is the first UK nation to green-light PVD, which is already available in other countries.

Read more: https://www.myeloma.org.uk/news/more-flexibility-for-people-living-with-myeloma-as-scotland-approves-two-treatments-at-second-line-and-beyond/

HealthTree for Multiple MyelomaMar 01, 2025

📢 March is Multiple Myeloma Awareness Month!

We need your support to raise awareness and accelerate the path to a cure. Here’s how you can help:

👉 Tell someone new about multiple myeloma—awareness starts with a conversation!

💬 Educate others.

📢 Share myeloma facts on social media.

🔬 Support research through surveys & studies.

🙌 Volunteer and be part of the movement.

💜 Donate to fund life-saving research.

Visit the Myeloma Awareness Month website: https://buff.ly/4kzJLr9

Every voice matters. Every action counts. Let’s make an impact together! 💪🔬🎗️

Thank you to our Myeloma Awareness Month sponsor @Pfizer

Myeloma UKFeb 20, 2025

Last August, Kavita and Pavan Shourie organised a team of thirty to climb Mount Snowdon following Pavan's myeloma diagnosis in 2022.

Pavan was diagnosed at 38 and has since undertaken chemotherapy and a stem-cell transplant.

We spoke to Kavita about the fundraising challenge and what it meant to them, she said:

"If you talk to most myeloma patients they will tell you the first time they heard of it was at diagnosis, as was the case with Pavan. building awareness is key.

All of us went up the mountain at our own pace and to see little blobs of orange (our t-shirts) climbing up the path at different stages was so good. So many people stopped us as we were walking to ask what we were climbing for and some even donated on the spot!"

We'd like to say a huge well done and thank you to Kavita, Pavan and their group for raising funds to support our work. 🧡

If you're feeling inspired to arrange your own fundraising event, we would love to help. Get in touch here: https://brnw.ch/21wQPXw

Multiple Myeloma Research FoundationFeb 21, 2025

In honor of #NationalCaregiversDay, we’re sending a heartfelt thank you to all the incredible caregivers who give so much of themselves to others ❤️. Annamarie’s caregiving journey began 10 years ago when her husband, JP, was diagnosed with #myeloma at 48.

Through it all, she’s learned the importance of having support and community. That’s why we created the MMRF Myeloma Mentor Program®—to ensure no one has to face this journey alone.

To schedule time with Annamarie, visit: https://ow.ly/RhMG50V2ZMY

International Myeloma FoundationFeb 21, 2025

What is the prognosis for #multiplemyeloma? Dr. Joseph Mikhael, Chief Medical Officer of the International Myeloma Foundation, explains the dramatic improvement in myeloma survival rates in a minute.

Cilta-cel Achieves Deep MRD Negativity in MM Patients

Treatment with cilta-cel leads to rapid and deep reductions in remaining cancer cells in patients with lenalidomide-refractory multiple myeloma, improving their prognosis. This results in sustained responses and better survival rates.

Myeloma UKFeb 15, 2025

Cathy Bell and her family raised funds for Myeloma UK by organising a walk in memory of her husband, Allen. The walk was a great success, with 20 family and friends – including dogs and children – all taking part. They raised a fantastic £2,038!

Cathy and Allen’s niece, Katie, came up with the idea to do the sponsored walk and set up the fundraiser. Some of the family couldn’t join the walk at Seahouses with the rest of the group, so they did the walk in Newcastle around where Allen grew up.

We spoke to Cathy about the walk and why it was important to her to raise funds in Allen’s memory: https://www.myeloma.org.uk/news/in-memory-of-allen-bell/

International Myeloma FoundationFeb 13, 2025

Unfortunately, we know that almost every patient with multiple myeloma will have a relapse, meaning their disease will come back after it's initially treated. Dr. Joe Mikhael, Chief Medical Officer of the International Myeloma Foundation, breaks down insights on early relapse at 2024 ASH meeting. #ASH24#IMFASH24

HealthTree for Multiple MyelomaFeb 14, 2025

Steroids like dexamethasone play a key role in multiple myeloma treatment, but their side effects can be tough to manage. Researchers are exploring ways to reduce steroid doses while keeping treatments effective! 📉✨ Could lowering dexamethasone improve quality of life for myeloma patients? 🤔💭 Read more: https://buff.ly/4b5pPYz

FDA Accepts Linvoseltamab BLA Resubmission

The FDA is reviewing linvoseltamab for treating multiple myeloma patients who have tried several previous treatments. This drug could provide new options for those with limited choices.

Teclistamab Induces Response in Multiple Myeloma Treatment

Patients with multiple myeloma who have tried several treatments may benefit from teclistamab, which helps the immune system fight cancer cells. However, it can cause side effects like infections and low blood counts.

Myeloma UKFeb 10, 2025

Blood tests are one of the commonly used tests and investigations for diagnosing and monitoring myeloma. Going for your blood test, waiting for your results and trying to make sense of them can be a worrying or confusing time.

But it’s important to remember that blood tests help your healthcare team to understand how myeloma is affecting you and in planning the right treatments at the right time.

In this month’s Ask the Nurse blog, we answer some of your questions about blood tests: https://brnw.ch/21wQB7z

Multiple Myeloma Research FoundationFeb 05, 2025

We are thrilled to announce the 2024 recipient of our Scholars Program, Camille Edwards, MD! 🎉 Dr. Edwards is at the forefront of groundbreaking research, mapping the molecular mechanisms of disease progression in #myeloma and AL amyloidosis.

Her work paves the way for better treatment options and patient outcomes. Please join us in congratulating her on this exciting achievement!

International Myeloma FoundationFeb 06, 2025

"Multiple myeloma hits our community hard," shares actor and artist Ice-T. For #BlackHistoryMonth, The IMF is spreading the message about multiple myeloma in the Black community. Know the signs. Share with your friends today. #IMFMPOWER

Quadruplet Regimens Enhance Multiple Myeloma Treatment

Quadruplet regimens improve treatment outcomes for multiple myeloma by adding an immunotherapy agent to established triple-drug combinations, leading to better response rates and longer remissions. This approach is particularly effective for standard-risk patients.

Dr. Landgren Discusses Multiple Myeloma Treatment Shifts

New treatments for multiple myeloma are moving away from chemotherapy, using more immunotherapies like bispecific antibodies, which improve patient outcomes by offering better responses and longer survival times.

Myeloma UKFeb 04, 2025

This World Cancer Day, we're recognising the unique stories and experiences of people living with myeloma and the importance of people-centred cancer care.

More than 24,000 people are living with myeloma in the UK. Everyone's myeloma experience is individual and deeply personal, but we are united in our message.

Together, we are the cure.

Multiple MyelomaFeb 02, 2025

I'm very young qnd just got diagnosed yesturday with MM, I'm 34 years old ... I have no idea what the next steps are I've been hospitalized for 2 weeks and today I talk to the doctors about treatment and the next steps but I'd like to hear other people's stories of the beginning of their diagnosis. Also if anyone lives in Okanagan BC Canada that my want to become friends.

New CAR T Cell Trials for Relapsed Multiple Myeloma

Researchers are testing two new CAR T cell therapies to help patients with relapsed multiple myeloma. These treatments involve using donor cells and targeting specific proteins on cancer cells, aiming to improve treatment speed and effectiveness.

Ide-Cel Shows Superior Efficacy in Multiple Myeloma Trial

Researchers found ide-cel significantly improved progression-free survival compared to standard treatments for patients with relapsed/refractory multiple myeloma, making it a strong option for later lines of therapy.

CAR T Therapies Expand in Multiple Myeloma Care

New FDA approvals allow earlier use of CAR T-cell therapies like ide-cel and cilta-cel for multiple myeloma patients, offering more treatment options sooner in their treatment journey.

New CAR T Cell Trials for Relapsed Multiple Myeloma

Researchers are testing two new CAR T cell therapies to help patients with relapsed multiple myeloma. These treatments involve using donor cells and targeting specific proteins on cancer cells, aiming to improve treatment speed and effectiveness.

Ide-Cel Shows Superior Efficacy in Multiple Myeloma Trial

Researchers found ide-cel significantly improved progression-free survival compared to standard treatments for patients with relapsed/refractory multiple myeloma, making it a strong option for later lines of therapy.

CAR T Therapies Expand in Multiple Myeloma Care

New FDA approvals allow earlier use of CAR T-cell therapies like ide-cel and cilta-cel for multiple myeloma patients, offering more treatment options sooner in their treatment journey.