Living well long-term – supportive care

Chapters

• 00:00 – Introduction & presenter overview
• Overview of speakers Trish Joyce and Nella, and the focus on living long-term with myeloma.
• 01:38 – What is supportive care?
• Explanation of supportive care and its role across the entire myeloma journey.
• 04:27 – Why supportive care matters in myeloma
• High symptom burden, physical and psychological challenges, and quality-of-life impacts.
• 07:22 – Myeloma treatment pathways and ongoing supportive care
• Standard treatment approaches and why supportive care is needed at every stage.
• 10:36 – Living longer with myeloma and changing priorities
• How longer survival changes care needs and long-term planning.
• 15:00 – Palliative care and supportive care
• Clarifying misconceptions and the evolving role of palliative care in myeloma.
• 18:58 – Benefits of early palliative care referral
• Evidence from the Care Plus study and patient experiences.
• 21:39 – Living Better With Myeloma Clinic
• Overview of the nurse-led, multidisciplinary clinic at Peter Mac.
• 23:16 – Medication review and patient preparation
• Role of pharmacists and pre-clinic assessments.
• 27:26 – Reducing infection risk and vaccinations
• Seasonal vaccines, COVID-19 boosters, shingles, RSV, and household protection.
• 31:36 – Bone health and dental care
• Bone-strengthening treatments, dental safety, vitamin D, calcium, and exercise.
• 33:01 – Cancer screening and preventative health
• Secondary cancer risk and national screening programs.
• 36:56 – Sexual health and intimacy
• Common concerns, impact on wellbeing, and referral pathways.
• 39:47 – Emotional and mental health
• Coping with uncertainty, anxiety, and accessing psychological support.
• 43:34 – Sleep and fatigue
• Acknowledging sleep disruption and available resources.
• 44:32 – Physical activity and exercise
• Safe activity, goal setting, and referrals to allied health.
• 45:22 – Kidney health
• Protecting kidney function, hydration, medications, and monitoring.
• 47:08 – Pain and peripheral neuropathy
• Types of neuropathy, management strategies, and specialist referrals.
• 48:55 – Your care team and GP involvement
• Care plans, communication, and coordinated care.
• 50:02 – Role of support organisations
• Importance of Myeloma Australia and community support.
• 50:59 – Q&A: Accessing palliative care
• Referral pathways and coordination with treating centres.
• 53:13 – Closing remarks

Transcript

00:00
My next two speakers, uh, between them have about 35 years of haematology nursing experience. Um, and they are going to talk about living long term with myeloma. Trish Joyce, uh, is nurse consultant with myeloma and autologous transplant service at Peter Mac VC, while Nella is nurse consultant with the myeloma service at Peter Mac BLC. Nella is also project manager with the Australian Cancer Survivor Survivorship Centre. Um, so both of these ladies are well qualified to talk about our next topic of living long-term with myeloma. Welcome, Trish and Nella.

00:36
Thank you.
Thanks, Tash.
Thanks, Laura.

00:43
And, um, thank you so much for having us here today. Um, we’re here at Peter Mac today. Uh, it’s been a busy day leading up to a long weekend, but we hope that everybody here is able to get something out of the presentation. We have prepared some slides, uh, but we’ll also talk, keep it fairly informal and casual, and there will be plenty of time at the end for people to ask questions.

01:17
Yeah. Right. I’ll just get this internet clicker working.

01:25
Doesn’t seem to be working. Um, is someone, if they’re able to change the slides for us?
Thank you.

01:38
So, uh, what we would like to cover today in this session is the importance of supportive care in the context of a changing myeloma landscape. We’re going to talk a little bit about a clinic that we have recently started at Peter Mac called the Living Better With Myeloma clinic, which is a nurse- and pharmacist-led clinic. We’ll also provide some practical tips to manage symptoms and enhance supportive care, which we hope will be helpful to everybody at home listening in today. We’ll talk also about the benefits of early referral to palliative care in symptom management and supportive care for myeloma, as well as the role of other health professionals, your GP, and support organisations in supportive care and living well with myeloma.

02:31
Thank you. So firstly, we’d like to start with what is meant by supportive care. What do we mean when we use that term? It is a bit of a medical term, so we’ve provided a bit of an explanation here on the slide to hopefully bring it into a bit of context, and you can think about this in terms of your own experience of living with myeloma.

02:55
When we’re talking about supportive care, we’re talking about the prevention and management of adverse effects or unexpected events, effects or side effects of cancer and its treatment. And this is wide-reaching. It’s not just talking about the physical effects of cancer and its treatment, but also psychological symptoms and side effects from across the cancer journey, all the way from diagnosis through to post-treatment care and all that’s in between.

03:36
The aim of supportive care is really to improve quality of life, rehabilitation — so getting better after cancer — and during cancer treatment or afterwards, preventing secondary cancers, survivorship, and also end-of-life care. So it’s really quite broad. Um, and it’s talking about all of the different aspects that contribute to our health and wellbeing.

04:03
And it’s not just in terms of the person who has myeloma, but also those who are affected by myeloma — our partners, carers, family, and close friends.

04:27
Great. Thanks, Nella. So why do we want to focus on supportive care for our patients, particularly living with myeloma? And we know that there’s a lot of research, I guess, out there that tells us particularly that patients undergoing blood cancers, and particularly especially people that are living with myeloma, deal with a lot of challenges. And that can change during your journey, if you want to call it that, through the illness experience.

05:13
So at the beginning with your diagnosis, there can be the shock, the disbelief that you’ve got this chronic disease. Um, then there may be the pain associated with the disease, the fatigue, and then of course we bring you in and start you on treatment.

05:30
So this study, which was a very large cohort, uh, including thousands of patients with blood cancers — but particularly it also included myeloma patients — tells us that there’s a huge, broad-ranging number of symptoms and challenges.

05:52
If you look at the physical, there’s the pain, the fatigue, the anorexia, the nausea that’s caused by the treatment, um, decrease in your physical functioning, not being able to do the roles that you once did. And then that can all impact on your psychological wellbeing and the anxiety that that creates amongst the person that’s going through the illness, but also their family and their carer.

06:25
I think that also impacts on your spiritual wellbeing and those existential questions that we all ask ourselves, you know, the meaning and why me. So there’s a lot of evidence to tell us as healthcare professionals that patients living with myeloma particularly are faced with a lot of symptoms, and particularly for myeloma patients there is a very high symptom burden.

06:52
And the onus is on us to be able to help you through that. So that’s why we really wanted to put that slide up — to show you that if you are having a bad day today, you know, there’s a good reason for it. And there’s lots of evidence out there to say that that’s the case, particularly when you’re living with myeloma. But also, there’s a lot of things that we can do.

07:15
I might go to the next slide.

07:22
So we thought we’d take a step back and talk about where we are right now when a person gets newly diagnosed with myeloma. So usually the standard of care here in Australia — it’s slightly different in North America and in Europe — is whether you’re suitable to have a transplant or not. So that’s the first question that will be discussed at this point in time.

07:47
There’s lots of exciting treatments ahead and that’s very likely going to change into the future, but right now that’s what we have. And so then the person would have maybe three to six cycles of a combination that you’re all probably familiar with, which is Velcade, Revlimid or lenalidomide, and dexamethasone, have stem cells collected, stem cell transplant, and then onto some maintenance treatment.

08:19
So there’ll be variations of that for each person. Um, it’s not one size fits everybody. And we like to think that as clinicians we’re able to give really individualised care for each person. But as you go through all of that, symptoms arise, side effects happen. It’s not just related to the myeloma itself, it’s also the treatment and it’s how you react and respond to the treatment.

08:48
So you can see that arrow that we’ve put at the bottom of those boxes is defining supportive care. And so supportive care, which we consider is absolutely a priority, goes all the way through from when we first meet you with the disease and you start treatment, and all going well into remission and then onto your maintenance part of your therapy.

09:24
So supportive care will be the backbone of managing your symptom burden throughout all of that.

09:29
And I guess, you know, lots of you on the webinar today, you know, there’s lots of different treatments out there. There’s lots of very exciting treatments coming. Um, and we put that slide up to say there’s a whole sort of landscape of changing treatments that will grow and become the new standard of care.

09:50
All of these treatments will have some kind of side effects. Um, and for where you are right now — if you’re on maintenance versus going on to consolidation or even your induction — supportive care is really going to be able to manage and help lessen the symptom burden for you as you go through whatever treatment you’re on.

10:17
Um, and just onto the next slide. Oh, sorry. I’m doing it and the CVP people are doing it too. So maybe I’ll just stop and we’ll go back one slide, please. Thank you. Oh, maybe just forward one. Oh no, this is right. Never mind.

10:36
So, um, as Trisha’s mentioned, there are the treatment options for myeloma and the way that we treat myeloma is changing. Um, and it has changed if we reflect back even the last five, ten, fifteen years.

10:53
Yeah. Um, and we know that people are living longer with myeloma and often have periods where they are on treatment for long term, and they may go from one treatment to the next treatment without a break. Um, sometimes there are breaks in between. Everybody is different.

11:12
Uh, but there is a role for supportive care throughout all the different phases of the myeloma journey. Uh, and they will change over time. And so priorities will change. And so our role as health professionals is to work with you to make sure that at each stage we are trying to address and manage your supportive care needs at that time for what is important to you.

11:47
What you see here is just the different phases as we’ve tried to conceptualise it. And the one there that we’ve circled is the one that we have been focusing on — that particular phase in the myeloma journey — and our patients who are either on maintenance or have stopped treatment for a treatment break.

12:13
Uh, and really trying to take that opportunity while things are stable and focus on enhancing supportive care and identifying priorities with patients about how to maximise their health and wellbeing. And we’ll talk a little bit more in detail about that as we progress through.

12:40
Next slide, please.

12:50
You want to talk about this one or — I can’t remember.
Yeah, we can talk together.

12:56
Yeah, I guess this is, um, as we’ve been talking, this is another review article, again just highlighting to us as clinicians — because our job is to better look after our patients and to try and improve your quality of life — to help you get from A to B, whatever that part of your journey is.

13:19
And when I look at a slide like this, I see that we as clinicians could do a lot better. And so that’s really been the impetus for why Nella and the myeloma team here have started this special clinic.

13:38
It’s this supportive care clinic or almost a survivorship clinic. Um, and we can talk a bit more about that, but again this was another study and it really highlights again how you, living with the disease, have lots of needs — including physical, emotional, daily practical stuff, you know, getting in and out of hospital for your treatments — that can be a major challenge, particularly at Peter Mac with all the roadworks that are currently going on.

14:10
Lots of informational needs, and a lot of these needs are not met by us as clinicians. So I think it’s on us as clinicians to think, hey, hang on a second, how can we do this better? How can we improve your quality of life to make living with myeloma as easy as we can for you?

14:36
So that’s really all what that slide is saying, but it’s really about just setting the scene and the impetus of why we looked at establishing this special clinic.

14:42
And when the researchers who were doing this study were looking at the unmet supportive care needs, the ones in the purple there with the circles and the ovals were looking at all people with blood cancers — so not just myeloma, but also included lymphoma and leukaemia.

14:55
And then the ones on the right in the blue boxes were the most frequently reported amongst the subgroup of people with myeloma who were included in the study.

15:00
And since starting working in the survivorship area as well, many of these needs are felt by other people and experienced by other people who are living with cancer and after treatment. However, we know that myeloma is somewhat different in that the treatment continues and that people have many lines of treatment. And so, as Trish mentioned, there’s a lot that we can do to support you better.

15:32
Next slide, please.

16:01
So, uh, we wanted to also bring in and talk a little bit about how palliative care relates to supportive care and also in the context of myeloma.

16:14
So the integration of palliative care in the hospital system is changing. It’s most commonly misunderstood as only appropriate for end-of-life care. However, this is not the case, um, as palliative care experts are also very, very experienced and skilled in symptom management and supportive care.

16:41
And we actually find that it is much more beneficial to integrate this in as we’re delivering supportive care for our patients because they can bring a lot of value to the patient care and the symptom management.

17:06
Next slide please.

17:12
So, um, it’s funny — palliative care is a funny word and has different connotations for all of us. Um, and it has its origin back in the first hospices that were set up back in the 1960s in the United States.

17:25
Um, but current knowledge and research shows that palliative care is important for end-of-life care, um, but also some very recent research shows that if you use palliative care and introduce that specialist team right at the start of a person’s journey with cancer — and it can be any type of cancer — it actually improves patients’ wellbeing. It improves their quality of life.

18:06
And the specialists that are working in a palliative care team help us as clinicians to manage our patients’ symptoms better. So it’s all about optimising that person’s quality of life, making sure we get control of their pain, manage their nausea better, give them advice around fatigue management.

18:30
These are all really important elements of a person’s journey with myeloma that need to be managed and need to be discussed in the clinic and need to be discussed with recommendations.

18:47
So palliative care now is being introduced much earlier. I might just go back because I haven’t gone to the definition, but this is a nice WHO definition from the World Health Organization.

18:58
So it’s an approach that improves the quality of life of patients and their families who are facing the problem associated with a life-threatening illness through the prevention and relief of suffering by means of early identification, assessment, and treatment of pain, and of course of other symptoms — not just physical, also includes psychosocial and spiritual.

19:29
So that’s why, as clinicians, and particularly in the myeloma landscape, we are all really supportive of introducing the palliative care physicians and specialists to meet with our patients much earlier on than we would have many years ago.

19:44
And so the next slide, please.

19:51
Great. So again, yeah, we were involved in a study here at Peter Mac called the Care Plus study that was completed last year. It included patients with myeloma and their carers and it looked at early referral to palliative care for newly diagnosed myeloma patients and the benefits.

20:19
Every one of our patients and their carers really felt it was beneficial. It helped them understand what palliative care was and what palliative care offered.

20:32
Some of the patients in that study had just a one-off appointment and then their symptoms were well managed. They didn’t need to connect with palliative care again, but they knew that if they did want to, they knew who that palliative care person was and they could ask to make another appointment to see them.

20:56
So that can be really empowering for you as a person — knowing, okay, I think I’d like to go back to that doctor because they were really good and gave me some really good recommendations and managed my pain really well.

21:07
So we want to empower you. You guys are the expert to help know who you need to call on to help improve your quality of life, manage your symptoms better, because that’s really what’s so important as you get through your treatment so you can remain as well as you can and keep that treatment cycle on schedule.

21:25
Yeah. So it’s that holistic approach that palliative care is really all about.

21:32
Next slide please.

21:39
So now we thought we would talk a little bit about our Living Better With Myeloma clinic, and we’ll then go through some of the elements that we cover in the clinic consultations, which are very much linked with supportive care and what we’ve talked about so far.

21:59
So the aim of our clinic was to establish a nurse-led clinic and multidisciplinary — meaning that we also have other people, other health professionals involved in the clinic who are not nurses, such as pharmacists and doctors.

22:18
And it’s really for patients whose myeloma is in a good remission. Um, they may be on treatment or off treatment, but focusing in on supportive care, health promotion, preventative health, and education.

22:37
Our clinic can be delivered or held either face-to-face or on telehealth. And as I mentioned before, we’ve got nurses, pharmacists, and doctors involved in the clinic at certain time points.

22:57
We identify the supportive care needs and the patient priorities in this clinic with the patients and their carers, and that really forms the basis of the care plan that we set and the goals that we set.

23:16
We try to get the pharmacist to see our patients beforehand. That’s usually a telephone call a couple of days or up to a week beforehand to go through current medications, identify any side effects that you might be having of those medications.

23:33
The pharmacists can also offer advice about how to manage medications and help our patients if they have questions regarding their medications. And this information is really helpful for us to have before the clinic so that we can focus on other things.

23:58
And we know that our pharmacists — we have a great pharmacist here — who’s really knowledgeable and has made some great recommendations to our patients, and then we can also follow up with them in the clinic and see how they’re going with that.

24:17
Also, I mentioned as well, Nella, we haven’t instigated it yet, but our plan is also to get our patients to fill out a survey before they come to see us in clinic.

24:30
And I guess that’s important information because it gets them to have a think about what are their priorities of care, but also what are their top symptoms or what are the things that are really dragging them down now.

24:45
So then that gives us an opportunity to get that information a week or two before we see the person in clinic so that we can really have a dedicated, targeted discussion about what those issues are for that person at that time and work to try and manage them better.

25:04
Yeah. Great. Uh, we do have quite a bit of time set aside for these consultations. Um, we only started in November. Um, so we hope that as we progress through and we start to see patients coming back to our clinic after three or six months that the consultations will become a bit shorter.

25:24
Um, but we have the time there to really explore the patient’s needs and take a detailed history of how these different side effects — persistent side effects — have been affecting them.

25:35
Um, because sometimes it’s actually the first time that people are mentioning some of these side effects as well, because we have the time to explore them in more detail and we’re prompting for discussions about things that maybe we haven’t spoken about before.

26:01
And I think sometimes — a point I would like to add — is medical appointments are often very quick and they’re very rapid, and often as myeloma nurses we don’t always get the opportunity to sit in with the doctor.

26:14
So that’s another reason why this dedicated clinic towards addressing the person’s supportive care issues was one of the reasons why we set that up. Because sometimes that appointment to see your consultant can be so quick you walk out of the clinic and you think, “Oh my goodness, I never asked this, this, and this.”

26:37
So this is really a great way to provide that holistic opportunity to be able to sit down and talk to people in detail.

26:48
Great. And now the next slide that we’re going to go through are different elements that we cover in the clinic. It’s not everything, but we thought that these would be particularly helpful for the audience today to know.

27:07
And also we hope that it provides some information for you to be able to take back to your own healthcare setting, whether it’s some things you might like to discuss with your treating team at the hospital or with your GP, because we work very closely with primary care and general practitioners in this clinic too.

27:26
Uh, so firstly, uh, we have a slide here about reducing the risk of infection. We know that people with myeloma have an increased susceptibility to picking up infections, and that spans across the whole myeloma experience.

27:47
Even when people are off treatment, even though there may be periods of time where you are more susceptible to infection, it’s something that we need to be aware of in our patients all the time.

28:05
So we like to take a bit of a history of vaccinations and where people are up to with their vaccinations in this clinic.

28:12
And at the moment, we’re just heading into influenza season. So we’re talking a lot about the seasonal influenza vaccines and recommending our patients go and get those as soon as available, and keeping up with COVID-19 boosters too.

28:39
The other thing is the Shingrix vaccine is now available on the PBS. So a lot of our patients are going back to their GPs to organise those.

28:53
Sorry, Trish — I’ll just add there’s also the RSV vaccine. Some of you will be hearing that mentioned maybe in the news or different literature or social media. It’s been approved and it’s safe and it’s not a live vaccine.

29:12
RSV is the respiratory syncytial virus and particularly it seems to have spikes in the winter months and it can be quite a significant viral infection. So this is a vaccine to help prevent that.

29:24
Just to point out, ATAGI has approved it, but it’s not PBS-approved yet. So unfortunately you can only get it on a private script. And it’s just one dose, but it is expensive at the moment — I think it’s around about $200.

29:43
But it’s one vaccine and it lasts for up to two years. So that might be something you might want to consider or have a chat with your myeloma specialist doctor about.

---

30:03
Yeah. Great. And then, um, as you can see there, there are a few other things that come under the infection banner. We can check immunoglobulin levels if they haven’t been done recently. Our pharmacists usually will review what preventative medications — antimicrobial prophylaxis — we didn’t change that, that’s a very medical term — preventative medications for protecting you against infections, as well as ongoing education about how to keep yourself as well as possible.

31:03
I guess, as Nella pointed out, we’re coming into winter. So making sure all of your household contacts as well — that’s something that we really start to educate our patients and families about. So trying to create a ring of protection for yourself. That’s why we really encourage household contacts as well to get vaccinated.

31:29
Okay, next slide please.

31:36
Bone health is also something that we cover in our clinic. We look at where people are up to in terms of their bone-strengthening medications like Zometa or bisphosphonates. We provide education about the importance of keeping up with daily dental hygiene and regular check-ups with your dentist to keep your teeth as healthy as possible.

31:59
And if you need any dental work, to make sure that our patients check with us first and we can make a decision about what to do with their bone-strengthening medication in order to get that dental work done.

32:11
We can check some blood levels for vitamin D and calcium, which are important for bone health, and if they’re low then we can work with the medical team to implement some supplementation.

32:23
As well as — and this crosses over into exercise, which we have on another slide — incorporating weight-bearing exercise into your routine is also important for bone health. So we do talk to our patients about their exercise and how to optimise or make some small changes to target weight-bearing exercise if they haven’t already got that as part of their exercise routine.

32:54
Yeah. Next slide please.

33:01
So in our clinic as well, there’s a big focus on preventing other illnesses and diseases. One of the reasons for that is that we know that anybody that has had a cancer and cancer treatment will have a slightly increased risk — and that’s very small — of developing a secondary cancer down the track.

33:28
So it’s good to know that, but the important thing is that we have really good screening programs in place. And one of the focuses of our clinic is to make sure we discuss that with our patients.

33:42
Particularly our patients who have been on treatment and now on their maintenance and doing very well. They’re back doing normal things and back at work. Sometimes with the busyness of everyday life, we forget about little things like this, and these are really important.

34:03
So there are excellent screening programs for bowel, skin, breast, cervical, and prostate cancer. And so much of our time in the clinic is discussing why these are important and why it’s important to follow the national recommendations for cancer screening.

34:26
I think it’s often scary to hear that, especially when you’re going through one cancer and you don’t want to get another one. But be reassured and feel empowered — a screening program is there to help keep you healthy, keep you safe, and to pick things up early where we can do something with little intervention.

34:59
So that’s a very important part of our clinic as well.

35:05
And then we work with the GP, because your GP is a really important person in your care. We communicate the discussion that we have with the patient in our clinic with the GP, but also checking other elements of your health, such as monitoring your blood glucose, monitoring your cholesterol levels and lipid profile, making sure that we reduce the risk of cardiovascular disease.

35:31
Checking your thyroid function, which is important after various types of treatment — all with a focus on keeping you healthy and identifying things early on where we can do something really meaningful to manage it in a straightforward way.

35:56
So the focus is on education, making sure that you understand what elements of health screening you need to undertake and putting a plan in place for that. And then it’s also about healthy lifestyle — making sure that if you are a smoker that you stop smoking because of the benefits to your health.

36:15
A healthy approach to alcohol intake and also recreational drugs. These are all elements that we discuss. They’re important for a healthy lifestyle for all of us, but in this clinic it gives us time to address those things in more detail.

36:48
Next slide please.

36:56
Another aspect of our clinic is around sexual health and intimacy. We always take some time to discuss this with our patients, and we’re very much guided by how comfortable people are talking about this.

37:09
But we want to create a safe place where people can talk about their sexual health and intimacy and bring up any questions or concerns that they have.

37:20
Some of the concerns that have been brought up so far are decreased libido, erectile dysfunction, vaginal dryness, uncomfortable or painful intercourse, and relationship problems.

37:47
Now, we know that all of these things can impact various aspects of somebody’s health and wellbeing — not just physically and emotionally, but socially too. And they are important aspects of us feeling healthy and good and living well.

38:07
So whenever we identify one of these concerns in our clinics, we are able to refer people on for management and support. We’ve got some really great clinics here at Peter Mac, but we also have other supports through communities and through GPs as well.

38:29
So for people listening in today, this is definitely something you can discuss with your treatment team. It’s not something you have to just deal with or accept as part of a long-term side effect of treatment.

38:54
We want to know if this is a problem. If you are experiencing any intimacy or sexual health-related issues because of your cancer or treatment, please bring them up with one of your doctors or nurses.

39:05
Yeah, I agree. It’s an underreported concern that patients report, and I think that’s precisely because we as clinicians maybe don’t create the right environment or ask the right questions.

39:16
As you can see on the slide, there are so many things that we can offer to help manage those concerns, and it can really improve wellbeing and feeling better about yourself.

39:41
Next slide please.

39:47
Okay. So emotional health and mental health. It’s a marathon, isn’t it, living with a myeloma diagnosis.

40:01
The good news is that the treatment landscape is changing, outcomes are improving, we’ve got a lot of exciting treatments to come, and we’ve made so much progress in how we manage this disease.

40:18
But that’s not to take away from the fact that it’s very up and down. There are so many challenges along the way, and those challenges can be different depending on where you are in your journey.

40:36
From the shock at diagnosis to the fear of relapse, even if you’ve gone into remission, it’s about managing uncertainty.

40:48
That slide shows a range of emotions — frustration, anger, sadness, depression — and we know there are so many challenges that contribute to how you manage your mental health.

41:11
It’s a very important part of looking after you. Physical and mental wellbeing are so intertwined that we have to take a holistic approach.

41:32
It’s something we discuss with our patients all the time. Talking about how you’re feeling, how your mental health is going, and what supports we can put in place.

41:46
There are lots of places you can seek support from. I think the first thing is putting your hand up and saying, “I am having a tough time,” and that’s really okay.

42:06
GPs are a great resource. Talking to your GP and setting up a chronic healthcare plan is really important, where you can access specialist care such as a psychologist, which can be subsidised.

42:40
And of course, Myeloma Australia and the support groups that are out there — that peer discussion and contact with people on a similar journey can be really invaluable.

43:04
So let your treating doctor or nurse know, because there are lots of supports out there and it’s very normal to feel many of those emotions.

43:26
Next slide please.

43:34
We don’t need to spend too much time talking about sleep and the effects of myeloma and its treatment on sleep, because you probably all know that very well.

43:47
But we do want to highlight a really great resource on the screen — a booklet called “Can Sleep” that can be downloaded via the Peter Mac website. It has lots of practical strategies and it’s applicable to anybody.

44:24
Next slide please.

44:32
Physical activity is something that we also talk about in our clinic. We recommend that our patients be as physically active as their current condition allows.

44:43
We work with them to set goals around exercise, and a lot of people find that they want to exercise but there are limitations. So we can refer to physiotherapists or exercise physiologists or ask patients to organise those through their GP.

45:22
This slide is talking about kidney health. Some people living with myeloma can have some kidney impairment, or their kidneys may not be working as well as they should normally, and that information would be known to you and discussed between you and your doctor.

45:34
I think even for people that don’t have any kidney impairment, looking after the kidneys is so important because we know that when myeloma is active, the protein itself can sometimes damage the kidneys.

45:45
A really good way to think about your kidneys is that they’re two big filters and you need to flush them well. So keeping up a good fluid intake is really important.

45:58
Your doctor will be discussing blood results with you, and certainly in our clinic we discuss blood results to let people know what their kidney function is doing. That’s an important question you can ask your doctor.

46:10
If you do have kidney impairment or your kidneys are a bit stressed, it’s really important to avoid certain medications or IV contrast used for some scans.

46:23
It’s really important to stay clear of non-steroidal anti-inflammatory drugs. Some over-the-counter supplements are absolutely fine, but some we’re not quite sure what’s in them, so that’s something we discuss with our patients and with our pharmacist in the clinic.

46:42
And of course, many people are on a bisphosphonate or bone-strengthening medication like Zometa, and monitoring kidney function is an important part of managing that treatment.

47:00
Next slide.

47:08
Pain and neuropathy can persist long-term or fluctuate over the course of the myeloma journey. Neuropathy can affect motor nerves, sensory nerves, or autonomic nerves.

47:23
Motor nerves control movement, sensory nerves pick up sensations from the external world, and autonomic nerves control internal functions like digestion and sexual organs.

47:40
Myeloma Australia has a wonderful resource called Managing Peripheral Neuropathy, which covers all the different types of neuropathy. If you haven’t already had a look at that, we really recommend it.

47:55
If you’re experiencing nerve sensations, digestion problems, or blood pressure issues, let your doctors and nurses know. Some medications may need to be changed, and there are treatments available, including medications and other strategies.

48:13
Referral to specialists such as neurologists, pain services, and palliative care teams can be really beneficial for people who have ongoing pain or neuropathy.

48:34
We’re conscious we’re coming to the end, so just bear with us — we’ve got a couple more slides to go.

48:47
Next slide, please.

48:55
So this is your care team. It’s about setting yourself up with a team of people who are there to help and support you through your journey with myeloma.

49:02
Having a GP is really important and making sure you’re comfortable with that GP. When we see patients, we always give them a copy of the care plan that we discussed.

49:16
That care plan is sent to the patient and the GP. It documents follow-up care that can be done locally, such as vaccination schedules, medication changes, cancer screening plans, and monitoring for other conditions like diabetes and cardiovascular disease.

49:39
Patients have fed back that they feel this care plan is very comprehensive, and they like that there’s clear communication between the myeloma centre and the GP.

49:52
If we refer a person to another specialist, that’s also documented in the care plan.

49:59
Next slide, please.

50:02
Your care team also includes other health professionals and specialists. We may refer to cardiology, respiratory, neurology, or other specialties as needed.

50:14
Community organisations such as Myeloma Australia offer an amazing amount of support. There’s only so much that hospitals and GPs can provide, and these organisations play an incredibly important role in living well with myeloma.

50:29
Please take the opportunity to explore everything these organisations offer — they’re there to help you and have excellent resources and staff.

50:48
That brings us to the end of our talk. Thank you so much. We’d love to answer any questions or hear any suggestions or comments.

50:59
Thanks, Trish and Nella. That was really enriching and I certainly learned a lot. We probably have time for one question, which is quite important.

51:13
Are patients able to self-refer to palliative care?

51:29
That’s a very good question. They would need a doctor’s referral, usually from a GP. Certainly if they’re a patient at Peter Mac and want to access palliative care here, they can speak to one of us and we would do the formal referral.

51:48
It’s probably best done within the centre where the person is receiving treatment so there’s good communication. Sometimes Nella and I will sit in with the palliative care doctor when they’re seeing one of our patients.

52:06
We’re coming from different disciplines, but the goal is the same — to improve symptom management and optimise quality of life.

52:24
So if that’s something a person feels they need, they should talk to their doctor or nurse.

52:33
Yeah, that sounds fabulous. I love the discussion of teams communicating with one another, and the plan for involving GPs. That’s something that’s often lacking in the general community.

52:47
Some great ideas for patients to take back to their usual treating centres.

52:53
Thank you very much for taking time out of your very busy day. We realised just this week that we put this session into Easter week, and health professionals are very busy in a short week.

53:07
So we really appreciate it. Thank you very much.

53:13
You’re very welcome.