Myeloma Patients Europe

MPE strengthens patient voice in cancer quality-of-life research at EORTC meeting

Adam Davenport — Thu, 01 Oct 2026 12:12:29 +0000

Last week MPE was in Zagreb for the Autumn EORTC Quality of Life Group meeting, connecting with colleagues working to strengthen the role of quality-of-life data in cancer research.

The EORTC is the European Organisation for Research and Treatment of Cancer, a cancer research organisation that brings people together to answer important questions about which cancer treatments work best and what their impact is on patients’ lives. The Quality of Life group focuses on measuring and understanding patients’ quality of life in cancer research.

Ahead of the official meeting, MPE’s Board Member Vincent Claus contributed to the pilot in-person SISAQOL training course. SISAQOL was a collaborative project that developed recommendations for designing, analysing, presenting and interpreting patient-reported data in cancer clinical trials. MPE was a work package lead on this European Union-funded project. Over the training course, participants learned and discussed how to apply the SISAQOL project recommendations.

MPE’s Head of Patient Research, Eilidh Duncan, attended the two-day in-person Quality of Life group meeting and represents MPE on a number of active projects within the group. These projects include the development of measures to capture patients’ experiences of T-cell engaging immunotherapies and to understand the impact of cancer and treatments on finances.

The meeting and discussions provide an important opportunity to bring the perspectives of the patient community and patient advocates into the group’s work. It also enables MPE to learn from others and share this learning with our members and community on new developments and best practices in quality of life measurement, analysis and interpretation.

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Highlights from the International Myeloma Society (IMS) annual meeting

Adam Davenport — Wed, 30 Sep 2026 14:06:51 +0000

From September 23-26, Myeloma Patients Europe (MPE) attended the 23rd International Myeloma Society (IMS) Annual Meeting in Glasgow, Scotland. The IMS Annual Meeting is one of the most important international conferences for myeloma researchers and healthcare professionals, bringing together experts to discuss basic science, preclinical research and clinical developments in myeloma. More than 3,000 people from over 75 countries attended this year’s meeting.

MPE was there to learn about the latest developments in myeloma treatment, diagnosis and monitoring, and to make sure that patients’ perspectives and priorities are represented in discussions about the future of myeloma care. Here are some of the highlights we took away from this year’s meeting:

Looking at the whole person

The Nursing and allied health symposium had a strong focus on the importance of quality of life and understanding what matters to patients.

One key message was that a frailty score alone does not always give a complete picture of someone’s health. A full geriatric assessment can consider areas such as mobility, mood and ability to carry out everyday activities, helping healthcare teams identify areas where support could help. The symposium emphasized listening to patients, as healthcare professionals may underestimate symptom severity. Patient-reported outcome measures (PROMs) can help healthcare teams and researchers understand the impact of myeloma and its treatments more fully.

We also heard how, as treatments become increasingly effective, health-related quality of life and PROMs will become increasingly important in clinical trials. We want to see clinical trials place greater emphasis on what matters to patients, including symptoms, side effects and how treatments affect everyday life, particularly when treatments offer similar levels of disease control.

Blood tests for diagnosing and monitoring myeloma

There was a lot of interest in new blood-based technologies for diagnosing and monitoring myeloma. Many aspects of disease monitoring, including assessing treatment response and minimal residual disease (MRD), currently involve collecting a bone marrow sample through a biopsy. People living with myeloma can have negative experiences of bone marrow biopsies, so there is interest in whether blood-based approaches could make monitoring easier and improve quality of life.

Several approaches are being studied, including looking for circulating tumour cells, using mass spectrometry to detect very small amounts of paraprotein, and analysing circulating tumour DNA. These techniques may help detect very small amounts of disease, assess risk and monitor treatment response. However, most blood-based approaches are not yet ready to replace bone marrow testing, which remains the gold standard test.

Preventing infections and side effects

A key message from the meeting was that infection risk changes over time and is different for different treatments. Rather than using a one-size-fits-all approach, healthcare teams are increasingly looking at how immune function, blood counts and other risk factors can be used to tailor infection prevention to each person.

There was also discussion about whether adjusting treatment schedules, including reducing how often some treatments are given or using fixed-duration treatment, could reduce the risk of infections and other side effects while maintaining treatment benefits.

Developments in myeloma treatment

Treatment developments were another important part of the meeting, with new results highlighting advances in both relapsed/refractory and newly diagnosed myeloma. Of note:

The CERVINO clinical trial showed that the investigational bispecific antibody etentamig improved response rates and helped people stay free from worsening myeloma for longer, compared with standard available treatments in people whose myeloma had already been exposed to three major classes of treatment. The treatment was given once every four weeks, which is more convenient for patients than the more frequent dosing schedules used for some other bispecific antibodies. Watch our interview explaining the outcomes of the CERVINO clinical trial.

The EXCALIBER-RRMM clinical trial found that iberdomide, a newer type of immunomodulatory drug, combined with daratumumab and dexamethasone led to deeper responses than daratumumab, bortezomib and dexamethasone in people with relapsed or refractory myeloma. There were more problems with low levels of neutrophils (neutropenia) and infections with the iberdomide combination, but nerve damage (peripheral neuropathy) was less common. Watch our interview explaining the EXCALIBER-RRMM clinical trial.

MPE at IMS

We were pleased to share MPE’s research at the meeting:

We presented a poster on how myeloma clinical trials can better include people from groups that are often underrepresented in research. It is important that clinical trials include the wide range of people affected by myeloma, so that new treatments work well for different people and communities and can be trusted by those who use them. Our research found that many approaches to making clinical research more inclusive were developed in the US. While these have often focused on improving inclusion across different ethnic groups, other factors that can affect someone’s opportunity to take part, such as mental health and their ability to give informed consent have received less attention. The approaches may therefore need to be adapted to ensure they are relevant to patients across Europe.

We also took part in the first ever patient group session at IMS, where we had the opportunity to share MPE’s priorities and our work to improve access to treatment and care across Europe, alongside other international patient organisations. We are grateful to the IMS for creating opportunities for patient organisations to be part of these discussions. As MPE Co-CEO Kate Morgan said during the meeting:

“We need to be working not just with other patient organisations but also with the IMS, industry and academic groups to tackle the shared challenges in myeloma and to bring the innovation we’ve seen this weekend to patients globally.”

Looking ahead

For MPE, the important question is not only what new treatments can achieve, but also what the experience of receiving those treatments is like for patients. Treatments need to be effective, but they also need to fit into people’s lives, support quality of life and be accessible to the people who need them.

If you have any questions or comments about IMS 2026, please contact info@mpeurope.org

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EMA committee recommends melflufen label expansion to third-line myeloma treatment

Ana Vallejo — Tue, 22 Sep 2026 08:00:40 +0000

On September 17, 2026, the European Medicines Agency’s (EMA) Committee for Medicinal Products for Human Use (CHMP) recommended extending the approved use of melphalan flufenamide (melflufen, Pepaxti®) to third-line myeloma treatment.

The CHMP is the European Medicines Agency’s (EMA) committee responsible for evaluating medicines and making recommendations on whether they should be approved for use in the European Union (EU). A positive recommendation from the CHMP still requires formal approval by the European Commission before it can be implemented, a process that typically takes a few months.

Melflufen is a medicine called a peptide drug conjugate. It is designed to deliver the active chemotherapy agent melphalan into myeloma cells, where it helps damage and kill them.

The CHMP recommendation would allow melflufen, in combination with dexamethasone, to be used in myeloma patients who have received at least two prior lines of therapy and whose disease is refractory to lenalidomide and their last line of treatment.

Melflufen is currently authorised in the EU for myeloma patients who have received at least three prior lines and whose disease is refractory to a proteasome inhibitor (e.g. bortezomib or carfilzomib), an immunomodulatory agent (e.g. lenalidomide or pomalidomide) and an anti-CD38 monoclonal antibody (e.g. daratumumab or isatuximab).

The recommendation is based on data from the phase 3 OCEAN trial. This study showed that melflufen plus dexamethasone delayed myeloma progression compared with pomalidomide plus dexamethasone, although it did not significantly improve overall survival in the overall trial population.

If approved, this would provide another treatment option for third-line myeloma patients in the EU. Following European Commission approval, treatment availability will depend on pricing, reimbursement and access decisions in individual European countries.

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Dr. Faith Davies interview on IMS 2026

Adam Davenport — Thu, 17 Sep 2026 13:04:55 +0000

As the International Myeloma Society (IMS) Annual Meeting is taking place this week, we caught up with myeloma expert Dr. Faith Davies, from NYU Langone, about her expectations for the meeting and why it is important for patient advocacy groups like MPE to attend.

What are you looking forward to most about IMS 2026?

I am really looking forward to spending four days talking and thinking about myeloma! There has been so much happening in the field recently that concentrating on the new advances will be incredible. IMS gives me chance to think about how I can incorporate the new advances into my own practice, and what the knowledge gaps are for new research.

The myeloma community is quite small, so the meeting is also great opportunity to meet up with old friends and colleagues. It is often conversations over coffee (or a beer!) that have the greatest impact. For example, hearing how someone has successfully managed a difficult clinical case or learning about a new laboratory technique.

You are chairing the plenary abstract session. What is the key data we will see in this session?

It is a real honour to chair the plenary abstract session which showcases some of the most exciting abstracts at the meeting. These abstracts cover important topics such as long-term outcomes for newly diagnosed patients, novel treatments for relapsed patients and new insights on the biology of myeloma.

Some of the abstracts are reporting their data about the results of clinical trials including data on etentamig, a second-generation BCMA x CD3 bispecific antibody; iberdomide, a CELMOD and an in-vivo dual targeting CART. We also have two more laboratory-based abstracts. One looking at how a protein called NSD2 can be therapeutically targeted in patients with t(4;14) myeloma and another looking at how we can identify ultra high-risk patients who may not respond well to current therapies.

What other developments should MPE and our members be paying attention to?

A key theme throughout the meeting will be about safety and efficacy of bispecific and CAR T-cell therapies, including a session on infections. There will also be a lot of discussions on the best sequencing of treatments for patients and on side-effect management. For me, it is not yet clear what the best sequences of treatment are for patients, so I am looking forward to hearing people’s views and joining in the lively debates!

Why is it important for patient groups like MPE to be involved in IMS?

One of the main reasons so much progress has been made in myeloma is the ability of everyone to work together, including researchers, pharmaceutical companies, doctors and nurses, regulatory agencies, patient organisations and patients. It is so important that everyone has a seat at the table particularly as there are so many advances in therapy, many of which have big implications for treating physicians, healthcare utilisation and patient life expectancy. MPE will be able to present their research, learn about new developments and, importantly, share their perspectives on what patients think, need, and value as we move forward together.

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Your views and experiences on myeloma, intimacy and sexual wellbeing

Adam Davenport — Thu, 17 Sep 2026 10:08:47 +0000

We want to hear from people living with myeloma and their partners about how myeloma or its treatments have affected intimacy or sexual wellbeing and what information would be useful on this topic.

Intimacy and sexual wellbeing can be difficult topics to talk about, but they are an important part of quality of life. Myeloma and its treatments can affect intimacy and sexual wellbeing in physical and emotional ways, yet these issues may not always be discussed with healthcare professionals.

MPE is developing a new educational video about how myeloma and its treatments can affect intimacy and sexual wellbeing. We want the video to address the questions and concerns that matter most to people living with myeloma and their partners.

To help us develop the video, we are inviting people living with myeloma and their partners to complete a short online survey. The survey takes approximately 5 to 10 minutes to complete and includes questions about your experiences and what information you are interested in.

The survey is completely anonymous. We do not collect your name, email address or any other information that can be used to identify you.

Please complete the survey by Monday 5 October 2026.

Your views can help us develop information that reflects the needs of people living with myeloma and their partners. Thank you for taking the time to share your experiences and views.

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Myeloma melodies is back in Paris

Adam Davenport — Mon, 07 Sep 2026 13:07:40 +0000

Myeloma Melodies, an awareness concert for myeloma, returns to Paris on 24 September for an evening of singing, music and fun.

The concert is organised by Sarah Tullamore, a professional singer, vocal coach and voice-over artist based in Paris, who is using her voice for a cause close to her heart: raising awareness of myeloma.

Advocating for earlier diagnosis is a cause very high on MPE’s agenda, and mainstream events like this are a great way of engaging with new audiences. Because the symptoms of myeloma are very common it can often be mistaken for other conditions, and patients can wait months to achieve a diagnosis.

Where the money goes

All funds raised on the night will be shared equally between two organisations working for people affected by myeloma in France:

AF3M, the French myeloma patient association and an MPE member organisation, which supports patients and families living with myeloma across France and Force Hémato, a Paris-based endowment fund which finances research into blood diseases, including myeloma.

Sarah has chosen to split the funds equally so that the evening supports both a specific cause and wider research.

Who is performing

The line-up features:

Les Jingle Belles — Devon Graves, Lexie Kendrick, Lauren Van Kempen and Daniel Arthur
The Sarah Tullamore Jazz Band — Philippe Petit, Pierre Maingourd, Jean-Michel Davis and Philippe Gobinet
Wendy Taylor
Lexi Rabé
Accordzéâm
and Vincent Heden

Event details
Date: Thursday 24 September 2026
Doors: 19:00 — the concert begins at 19:30
Venue: Théâtre de l’Église Américaine, 65 quai d’Orsay, 75007 Paris
Tickets: €25 (single price) — book here
Drinks and light refreshments available on the night

Sarah’s story

When Sarah was diagnosed, her myeloma was smoldering, meaning it was asymptomatic. She chose not to tell most of her friends at first.

“What was difficult to accept was having preventive treatment while I was asymptomatic. I felt nothing in my body and I had no physical symptoms of the disease, but my blood results were getting worse with every test, and the medical team wanted to prevent the disease from becoming symptomatic.”

The winter that followed was hard. Sarah tolerated the treatment badly and it had to be readjusted. She is doing much better now, and remains confident about what comes next: “I tell myself that I am going to come through this, and that my results will keep improving.”

It was the first Myeloma Melodies concert, in September 2025, that brought her diagnosis into the open.

“My illness was brought out into the daylight, and I was relieved in the end to talk to them about it — my family being in England.”

Her friends in Paris became a source of real support through the difficult months that followed. It is a reminder of something the myeloma community knows well: talking about myeloma with those closest to you can make a profound difference.

From 65 seats to 120

The first concert, held on the Péniche Marcounet in aid of AF3M, was such a success that Sarah had to turn people away — the venue held 65 people and it sold out.

“Last year was a test. I wanted to see whether the concept worked, and the answer is yes.”

Her ambition is for the concert to grow year on year, and this year they are back with a bigger venue, which means they can raise more awareness.

What to expect

Sarah has planned a programme mixing jazz, musical theatre, soul and perhaps some gypsy folk. “They are quite different styles, but they work well together. The aim is for the audience to have a very musical and very convivial evening, while allowing me to get an awareness message across to everyone there.”

During the evening she will again talk about myeloma and about AF3M. The concert also falls during Blood Cancer Awareness Month and just days before European Myeloma Day on 27 September, when the myeloma community across Europe comes together to call for earlier diagnosis.

Find out more

Follow @myeloma_melodies on Instagram for updates, and book your tickets here.

Myeloma Melodies is organised independently by Sarah Tullamore. MPE is sharing details of the event to support our member AF3M and to help raise awareness of myeloma, but is in no way connected to the event. For questions about the concert, please contact the organiser directly, via Instagram.

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Preview to members September activities across Europe

Adam Davenport — Wed, 02 Sep 2026 12:35:36 +0000

September is shaping up to be an extraordinary month for myeloma awareness and advocacy across MPE’s member network. From Portugal to Serbia, from Lithuania to Slovenia, our members are planning bold, impactful campaigns to raise awareness during Blood Cancer Awareness Month and European Myeloma Day on 27 September.

Key member activities include:

Portugal (APCL) is running a full month of engagement: a blood cancer awareness campaign, a specialist seminar on transplant on 12 September and a survivorship conference on 25 September, bringing together patients, carers and clinicians.

Serbia (AMPS) is taking awareness nationwide with an EMD event on 27 September and a caravan campaign driving across the country, printing and distributing the myeloma diagnosis pathway to reach GPs and primary care physicians at grassroots level.

Slovenia (Društvo BKB) is running their most comprehensive campaign yet: a press conference, educational lecture, information stands in 12 hospitals, a “Walk in Red” awareness event, landmark illuminations, and a photography competition as part of the Capture the Light project.

Lithuania (Kraujas) is leveraging clinical networks, publishing the MPE Myeloma Diagnosis Pathway on ‘FOCUS’ a digital platform accessed by over 5,000 GPs and family doctors, ensuring broad visibility among primary care professionals.

Russia (Mercy Bridge) is hosting a European Myeloma Day Patient School, an educational event bringing together leading haematology experts to discuss early diagnosis, innovative treatments, and patient support.

Israel (AMEN) is focusing advocacy on innovative treatments, campaigning to raise awareness of bispecific antibodies and CAR-T therapy and advocating for their inclusion in Israel’s National Health Basket.

Czech Republic (KPMM) is hosting a 2-day patient seminar and distributing the diagnosis pathway through GP-focused partner networks.

These campaigns reflect the breadth of our network and the commitment of our members to putting myeloma and AL amyloidosis on the European health agenda. From public awareness events to clinician engagement, from survivorship support to innovative treatment advocacy, our members are driving real change.

If you would like to share your member organisation’s September plans, or if you need support materials for your own BCAM or EMD activities, please get in touch.

Thank you to all our members for your dedication and leadership!

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IMS President Philippe Moreau previews this months IMS Annual Meeting

Adam Davenport — Wed, 02 Sep 2026 08:36:10 +0000

Myeloma Patients Europe (MPE) is attending and presenting at the International Myeloma Society (IMS) Annual Meeting taking place in Glasgow from 23–26 September 2026. The meeting, attended by over 3,000 delegates from around the world, features presentations on the most important data and topics in myeloma.

MPE recently interviewed IMS President and member of the MPE Medical Advisory Committee, Prof. Dr. Philippe Moreau, to understand his perspective on the importance of the meeting and patient advocacy involvement.

What do you most look forward to about attending IMS?

There is an extraordinary amount happening in myeloma today. New treatment approaches are producing deeper and more durable responses, and we are now having serious scientific conversations about cure that would have been difficult to imagine not long ago. Bringing more than 3,000 people together from around the world with a shared purpose of learning from one another and advancing the field is what makes the IMS Annual Meeting such an important gathering.

In your opinion, what are the key topics and data that will be presented at this year’s meeting?

The scientific programme reflects just how quickly myeloma research is advancing. We will see first findings from phase II and III studies, longer-term data from major clinical trials, and continued progress in immune-based therapies and treatment strategies. The plenary programme is especially exciting – it includes research that could inform frontline treatment, maintenance, relapsed and refractory disease and long-term outcomes. We will also continue the discussion around cure: how we define it, measure it and make it achievable for more patients.

Investigators increasingly view the IMS Annual Meeting as a key venue for presenting important new data. The meeting brings together experimental scientists, translational investigators and clinical physicians to discuss how important laboratory findings transition into next-generation clinical trials. The cutting-edge research presented represents the future of myeloma care. Ideas for clinical trials and new advancements in medicine are developed inside our meeting halls.

Our joint sessions with stakeholders including European Hematology Association (EHA) and patient organisations – including MPE, International Myeloma Foundation (IMF), Multiple Myeloma Research Foundation (MMRF), Myeloma UK and Myeloma Australia – also allow us to examine progress from different perspectives.

Why do you think having patient organisations on the agenda at IMS is important?

Patients are at the heart of everything IMS does. Scientific progress is most meaningful when it remains connected to the priorities, experiences and needs of the people we are trying to serve. As a global organisation, IMS brings together clinicians, researchers, regulatory experts, patient advocates and other stakeholders from around the world. Having patient organisations on the agenda ensures we hear firsthand about the priorities and challenges facing patients across different countries and health systems.

It also allows patient advocates to learn from one another and build stronger relationships across borders, helping ensure advances in research. Clinical care and policy remain connected to what matters most to patients.

What are the next steps for IMS working with patient organisations?

Patient organisations have long been partners to IMS, particularly in advocacy and consensus-building. As the field advances, we want to deepen those relationships and incorporate patient perspectives early when developing recommendations, considering policy priorities and defining outcomes that matter in patient care, including quality of life.

The next step is not simply to bring more patient organisations into the conversation, but to create more opportunities for meaningful collaboration. We want to strengthen connections among patient organisations, clinicians and researchers and ensure that progress in myeloma translates into progress patients can see and experience.

The 23rd Annual Meeting of the International Myeloma Society (IMS) takes place from 23-26 September, in Glasgow, Scotland.

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A young patient’s experience of induced menopause after myeloma treatment

Adam Davenport — Wed, 02 Sep 2026 07:15:40 +0000

As part of our September European Young Myeloma Patients Group (EYMPG) meeting on Induced Menopause and Sexual Health in young myeloma patients, Filipa Lopes has shared her personal experience of treatment induced menopause.

She was diagnosed with myeloma at the age of 29 and hopes her story encourages other young patients to seek support and know they are not alone.

Filipa`s Story

Hi everyone,

I was diagnosed with myeloma at 29 years old, and I would like to share my experience with medically induced menopause with all of you.

Before my stem cell transplant, my doctors explained the different side effects I could experience from the high-dose chemotherapy. However, it wasn’t until I actually experienced them myself that I truly understood what induced menopause meant and the impact it could have on my body, my mind and my self-esteem.

The first sign was the loss of my period. I had my last cycle a few days after my transplant and that was the last time I saw it. Then came the sudden hot flashes and night sweats, vaginal dryness that led to pain during sex, weight gain, difficulty concentrating and mood swings. It felt overwhelming. I was already trying to cope with this diagnosis and everything that came with it, and suddenly I was also dealing with changes that made me feel like I no longer recognised my own body. Slowly, I also started to realise that becoming a mother after all of this would be extremely difficult, even though I had frozen my eggs before treatment. That was another very painful thing to process.

When I first shared what I was experiencing with my doctor, I felt dismissed and ignored. And this is really difficult to talk about. But I was so uncomfortable and so unhappy with the way I was feeling that I decided to share all my symptoms again at my next appointment. I will never forget what he told me: “Young lady, it was us who did that terrible thing to you…”

Although I understood that the treatment had caused these changes, what I needed at that moment was empathy and support. Instead, there was no advice or discussion about possible ways of managing my symptoms. It felt as though menopause was something I simply had to accept and put up with, and that eventually it would all go away. But I was struggling a lot.

What really helped me during that period was reaching out to my support network. I had several sessions with my psychologist and most importantly, I reached out to other people who had gone through similar experiences. In particular, I had a friend my age who had been diagnosed with breast cancer and was going through many of the same changes. We shared our struggles, talked openly about things that were sometimes difficult to say out loud and exchanged tips on how to cope with them. Knowing that I wasn’t alone made a huge difference.

Four years have now passed, and I am doing well. Looking back, I wish I had known that I didn’t have to simply accept all of these symptoms as something I had to endure.

So, my advice to all of you is: if you are struggling, please speak up and ask for help. You don’t have to suffer in silence just because something is a consequence of cancer treatment. Talk to your medical team, ask about options for managing your symptoms, and don’t be afraid to seek a second opinion if you feel that your concerns are not being heard. Reach out to your family and friends, psychologists, patient advocates or patient organisations. And, if possible, connect with other young people who have gone through something similar.

You deserve to be heard, supported and cared for.

Stay strong

Need support or want to learn more?

Join our upcoming EYMPG meeting on 17 September 2026 about Induced menopause and sexual health in young myeloma patients.

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EMA committee recommends teclistamab plus daratumumab for relapsed or refractory multiple myeloma

Ana Vallejo — Fri, 03 Jul 2026 12:28:59 +0000

On 25 June 2026, the Committee for Medicinal Products for Human Use (CHMP) recommended extending the approved use of teclistamab (Tecvayli®) to include its use in combination with daratumumab for adults with relapsed or refractory myeloma who have received at least one prior therapy.

The CHMP is the European Medicines Agency’s (EMA) committee responsible for evaluating medicines and making recommendations on whether they should be approved for use in the European Union. A positive recommendation from the CHMP still requires formal approval by the European Commission before it can be implemented, a process that typically takes a few months.

Teclistamab is a bispecific antibody that helps the immune system recognise and destroy myeloma cells.

The CHMP recommendation is based on the results of the phase III MajesTEC-3 study, published in the New England Journal of Medicine. The study showed that patients treated with the combination of teclistamab and daratumumab lived longer without their myeloma getting worse compared with those receiving standard treatment. Watch below a patient-friendly video explaining the study, its results and its implications for clinical practice.

If approved, this would be the first authorised treatment combination in the European Union to combine a bispecific antibody with daratumumab for the treatment of myeloma.

Following any European Commission approval, availability will also depend on national assessment, pricing and reimbursement decisions in individual European countries.

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