Ask the Nurse: Myeloma and younger patients

While myeloma is more common in older people, around 1 in 4 people diagnosed are under the age of 65, and some are considerably younger than that. Younger patients often face different challenges and considerations such as work and family responsibilities. Sometimes younger patients can feel somewhat isolated because of their age, and as though much of the available information and support is aimed at older people. However, there are resources designed specifically for younger people and their loved ones.

In this month’s blog, we answer some of the questions you ask our Myeloma Infoline team about myeloma and younger patients and share where you can find the support you need.

Will my treatment be different because I’m younger?

If patients are younger and fitter, they are often offered more intensive treatment with the aim of achieving deep and long-lasting remission. This can include high-dose therapy and autologous stem cell transplant (HDT-SCT). You can read more about this in our High-dose therapy and autologous stem cell transplant Infoguide.

Because these treatments can be demanding, maintaining a healthy lifestyle by staying active where possible, eating well and looking after your mental wellbeing can make a real difference to your recovery and overall quality of life. Your healthcare team can advise on safe exercise tailored to your circumstances and our Infopack on living well with myeloma contains lots of helpful tips.

Will I be able to continue working during treatment?

There are several factors to consider, such as which treatment you are receiving, the nature of your job, how myeloma symptoms and treatment side effects are affecting you and the support you have around you. Some people continue working, while others need to adjust their hours or take time off.

Your ability to work may change during treatment. It’s a good idea to speak to your employer at an early stage so they can provide flexibility and support when you need it. Read more in our Ask the Nurse blog on myeloma and work or watch our Working and living with myeloma Digital Infoday Session.

There may also be financial help available. You and those caring for you may be entitled to benefits, and there are schemes to help with costs like energy bills. For details and links to organisations that can offer guidance, see our Benefits and financial support Infosheet.

Can treatment affect my fertility?

Unfortunately, many of the most effective treatments for bringing myeloma under control can impact fertility, either temporarily or permanently.

For example, high doses of melphalan – a chemotherapy drug used in HDT-SCT, can sometimes affect sperm counts or trigger early menopause. If this is something you are worried about, do speak to your healthcare team as soon as possible and they will explain what options may be available to you to preserve your fertility. You can read more about fertility in Section 5 of our Infopack for living well with myeloma or watch our video about Issues for younger myeloma patients. 

How do I explain myeloma to my child/children?

It’s natural to want to protect children from difficult news but explaining what is happening may make things more understandable and less unsettling in the long term. Children may notice changes in family routines or overhear conversations, so giving them clear, age-appropriate information helps them feel secure and gives them a chance to talk about any fears or worries.

As a parent or guardian, you know your child best and know the best way of talking to them, how they may react and what support they might need. If you have young children, our illustrated children’s book Kelsey and the Yellow Kite may be helpful in explaining myeloma to them. Chapter 3 of our Infopack for living well with myeloma has tips for speaking to older and younger children and you may also find our Ask the Nurse: Parenting and grandparenting with myeloma blog helpful.

For more support:

• Organisations like Barnardo’s and Hope Support Services provide emotional support for children and teenagers with a parent living with cancer.
• Macmillan Cancer Support have an in-depth booklet and some brief tips for talking to children about cancer.

What support is available for younger patients?

As myeloma is more common in older people you might sometimes feel out of place in typical care settings or find that some support material can be tailored towards this age group. However, there are services and communities designed to support you and your loved ones:

• 50s and Under Support Group – which is ran by volunteers and meets virtually once a month, welcoming patients as well as friends and family.
• Peer Buddy service – where you’ll be paired with someone who can share their real-life perspective that’s relevant to you.  They can provide support, understanding and a listening ear, one-to-one.
• Infopack for newly diagnosed myeloma patients – pages 16–17 and 77 onwards includes information specifically for younger patients.
• Myeloma UK Infoline and Ask the Nurse email service – where you can talk about practicalities of the emotional impact of being a younger patient.
• Myeloma UK Discussion Forum – where patients, family members or carers can join in conversations or start new topics to connect with others in similar situations.

You can also reach out to your GP or healthcare team to access professional support such as counselling, or use the self-referral service at NHS talking therapies. 

What does living with myeloma look like long term?

Living with myeloma usually means regular monitoring and often ongoing support for things like bone health, kidney function and side effects like fatigue or nerve pain. The relapsing/remitting nature of myeloma can be challenging and may cause anxiety at times.

Looking after your emotional wellbeing is just as important as your physical health. Support from your healthcare team, friends and family or counselling can make a big difference. Our Infopack for living well with myeloma has practical tips for day-to-day life and our Vaccines and myeloma Infosheet explains the importance of staying up to date with vaccinations and infection precautions.

It is possible to live well with myeloma and some people return to their regular routines following successful treatment, while others adapt their routines to manage side effects.

Travel is still possible and planning ahead can make it easier. Our Ask the Nurse: Holiday planning blog offers helpful guidance and our Travel insurance and myeloma Infosheet shares tips for finding the right cover.

Myeloma can also affect relationships, but open conversations and support really help. For tips and advice see our blogs:

• Ask the Nurse: Talking to friends and family about myeloma
• Ask the Nurse: Myeloma, sex and intimacy.

If you have any further questions or need support, contact us through the Myeloma UK Infoline at 0800 980 3332 (UK) or use our Ask the Nurse email service.