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TRANSCRIPT
Dealing with pain and mind/memory problems
Lisa Ferguson
Myeloma Advanced Nurse Practitioner
Oxford University Hospitals NHS Trust
This talk will cover…
Two complications of myeloma and/or
side-effects of its treatment:
• Pain
• Mind and memory problems
How these can be treated and managed
1. Myeloma and its treatments can cause a number of
complications and side-effects
2. Be aware of these, look out for them and report
them to your doctor or nurse
3. They can sometimes be prevented, and can be
managed and treated so that they have less of an
impact on quality of life
Three take home messages
Side-effects and complications
“A constant daily
grind. Limiting
me physically at
work and in
social terms. You
learn to cope but
it’s hard for other
people to really
understand what
you feel.”
Vote:
Q: Has myeloma-
related pain
affected you?
Pain
Top 5 causes of pain in myeloma
Pain affects up to 80% of patients at some
point during the course of their myeloma.
Results from a
2017 Myeloma UK
patient survey
“My pain is constant and
unrelenting – it gives a feeling
of isolation that no one apart
from me and my husband can
understand. It’s a daily battle
to keep focused”
100%physical effects
60%
55%
social effects
psychological &
emotional effects
100%
How pain can affect you
Pain management
Non-medical treatment
“Take each day as it comes
because every day is different.
Feeling positive helps!”
Living with pain
“Seek support from as
many places as
possible. Hospice
outpatient teams can be
very helpful and also
open up opportunities
for complementary
therapies”.
“Get a really
comfortable
mattress if you are
suffering back and
rib pain.”
Tips from 2017 survey of patients about pain
“Try orthotic
insoles to relieve
peripheral
neuropathy.”
Patient tips
Vote:
Q: Have you
been affected
by mind or
memory
problems?
Mind/memory problems
• A general fogginess,
feeling out of sorts,
struggling to remember
words - usually due to
the effects of treatment
• Fatigue, infection,
stress and anxiety can
make things worse
Chemo brain
Steroids can cause
some troublesome
‘neuropsychiatric’
side-effects
• irritability
• psychosis
• mania
• euphoria
• agitation
• panic
• mood
swings
• anxiety
• insomnia
• depression
• distractibility
• delirium
• memory
loss
The dreaded dex
• Report dex side-effects promptly to
doctor or nurse – doses can be
lowered and/or frequency adjusted
• Try relaxation, meditation or
visualisation techniques
• Take dex in the morning to reduce
insomnia
Managing dex
• Write important details down - use post-its, a
notepad or noticeboard
• Put everything in a diary or wall calendar
• Set alarms and reminders on your phone
• Take gentle exercise
• Do mental exercises like puzzles and crosswords
• Take time in the evening to reflect and process the
day
• Rest well
Mind/memory problems
– self help
“I decided the best plan
was to stop apologising
for my unusual
behaviour, move on and
understand it was just
part of the reaction to
the drugs.”
“Try to prepare for your
‘dex days’. Take a long
walk to tire yourself out,
have a paper to read or
a programme to watch is
you wake and can’t get
back to sleep.”
Tips from patients featured in Myeloma
Matters.
Patient tips
• Pain
• Mind and memory problems
• How these can be treated and managed
Please ask any questions about other complications
and side-effects in this afternoon’s
‘Ask the Expert’ session
This talk has covered…
“Don’t waste time and
energy on things you can’t
do anymore. There are still
lots of things you can do.”
Tips from The small things that make all
the difference book
Patient hints and tips
1. Myeloma and its treatments can cause a number of
complications and side-effects
2. Be aware of these, look out for them and report
them to your doctor or nurse
3. They can sometimes be prevented, and can be
managed and treated so that they have less of an
impact on quality of life
Three take home messages
Myeloma & Me video
‘Roger’s Story - Dealing
with pain’
Myeloma UK resources
Any questions?
Thank you