Patient Story Type: Myeloma

While the world spent 2020 battling COVID-19, Dean Cole had another challenge thrown into the mix – being diagnosed with blood cancer.

Dean says that his body first tipped him off that something was wrong when he woke up with chest pains on a Sunday morning.

“I thought I had just slept quite awkwardly and I didn’t really think too much of it.  But over the period of about five days, it became really, really intense. I was at work, and I couldn’t do anything. I couldn’t breathe.”

From there, Dean went to visit his GP who saw him right away. She ran a whole bunch of tests, which included a chest x-ray and some bloodwork. His results showed that he was slightly anaemic, along with a few other ‘abnormalities’. It was then that his GP referred Dean to a haematologist who ordered a bone marrow biopsy.

“He got me back in a couple of days later and said that it was myeloma and that we needed to get me started on some treatment, quickly!”

This news came in January 2020, but his symptoms started in the middle of December 2019.

“We were on edge over Christmas. It was quite scary.”

Despite his concerns over a potential diagnosis, Dean and his wife Jasmin decided not to tell their daughters (Anika who was 6, the twins Aaliyah and Jayde at 7, and 9 year old Maea) until they were sure. Their response, when the couple did tell them, was one that we can all take to heart:

“We still see you as you.”

Dean had a stem cell transplant in July, and throughout his journey has since kept in contact with his Christchurch-based LBC Support Services Coordinator, Matthew Eby, who had made contact with him within days of his diagnosis. The couple’s four daughters also attend the LBC Kids Club, which he says they thoroughly enjoy. Dean summarised these key touch points in one word, “support”.

“A random phone call from Matt every now and then to see how I’m doing is quite heart-warming. It’s these little things, like showing you they care.”

Frances from Waitara turns 80 in December – it’s a birthday she wasn’t sure she would see. As is the case for many people, Frances’ cancer journey began with a seemingly unrelated incident, she explains: “I tripped and jarred my back and started to get back pain which didn’t get better. I went to the doctor and they gave me painkillers and said they thought it was a combination of the injury and my age.” 

Frances’ pain went on for six months and got to the point where she was practically bed ridden. Eventually her doctor did some blood tests which showed up some worrying results and in February 2019 she was referred for a bone marrow aspirate in Palmerston North Hospital. Test results showed that Frances had multiple myeloma: “I was quite calm when they told me, in fact I was a bit relieved because at least there was something diagnosed – I had been putting up with things for so long. The worst part was having to ring my daughters and tell them.” 

Frances began six months of chemotherapy, as she explains: “I didn’t lose my hair and I only had a bit of nausea and could sleep alright – by that stage my back pain was a bit better too which helped.”

After six months Frances was changed onto a regime of thalidomide and 6 dexamethasone and by early December 2019 her bloods were looking so good that her haematologist recommended she come off treatment: “I’ve been off the treatment ever since although I have blood tests every three months and regular infusions.” 

Frances was a regular attender of her local LBC support group before lockdown changed things, as she explains: “I find the meetings useful and enjoyable. For me it was really eye opening – how did I get to this age without knowing about these things!” 

Frances continues to have regular check-ups and blood tests but tries not to focus solely on her condition: “I know there’s no magic remedy so I don’t dwell on it. I wanted to share my story to give people a bit of hope – when you are diagnosed it’s not necessarily the end of life as you know it. There’s lots of help out there if you reach out.” 

When Nick began experiencing back pain that progressively got worse he went to the osteopath and chiropractor in an attempt to get some relief. As he explains: “I was only 48 at the time and was otherwise fit and healthy but it got to the point where the pain was so bad I couldn’t walk.”

Nick’s osteopath recommended he see a doctor. He was referred by his GP to an orthopaedic surgeon and an MRI showed Nick had a growth on his sacrum. Nick was sent to Wellington Hospital from his home in Whanganui where further tests revealed the growth was a plasmacytoma– his doctors told him it was likely to progress to multiple myeloma. That was back in April 2006 and by May, Nick had begun radiation treatment in Palmerston North Hospital. Nick’s pain improved but his cancer was progressing – in 2007 he had an autologous Stem Cell Transplant (SCT), he explains:

“They told me the SCT was likely to last about five years – they were spot on! For most of the next five and a half years I was in remission and, once the pain had resolved, I was leading a pretty normal life and got back to tramping and playing tennis and golf.”

In 2012, after a move to Rotorua, Nick’s cancer started to reappear and his haematologist recommended a second SCT – at the time he was told it would likely last a further two years. By 2015 blood tests revealed Nick’s cancer had started to progress again so he began Lenalidomide (which at the time, had just been funded by Pharmac). That worked for nearly a year but as Nick explains: “In 2016 the cancer came back and they didn’t know what they could do next so they looked at an allogeneic SCT. However the doctors explained it had only a 10% chance of cure and 60% chance of ongoing problems.”

Nick and his wife Rose had a lot to consider. When it came time to meet with the team at Wellington Hospital things took a sudden turn: “We had decided to try the allogeneic SCT but the team said “we don’t need to give you one – there is a drug trial you can go on… it might help you!”

Nick entered an international trial of 300 patients to test if the immunotherapy drug Keytruda, when given in conjunction with Dexamethasone and Pomalidomide, had benefit for patients: “I was randomly selected to receive just Dexamethasone and Pomalidomide (so was in the control group), it helped me for three to four months but the trial had a rule that if your counts increase 25% you have to stop and that happened for me.”

Nick went on to cycles of different drugs, some had benefits for just a few months, others for up to 18 months. In May this year Nick’s online research uncovered a drug called Selinexor that had been recently approved in the USA. His haematologist supported him in making an application to receive a compassionate supply which he began taking in July.

It has been a long road for Nick as he says: “The most difficult time for me was at diagnosis – I was 48 with one child still at school and I was told there’s no cure. But my youngest daughter is now 30 and whilst I am certainly not going to have an average life expectancy, I am still here!”

Nick has now retired from full-time work but still volunteers in his community and leads a full life: “I can still walk around the golf course and get down on the floor and play with the grandkids! ”

Nick attends LBC’s local support group: “I’m now in my 14th year with myeloma and it can be helpful for people who have just been diagnosed to meet someone like me. When I was first diagnosed it was a nervous wait for each set of results of scans and blood tests but now it’s just part of the fabric of my life.”

As a scientist, Ian Laban is familiar with the processes involved in laboratory testing, but in early 2016 he had no idea that he would soon be the one supplying samples for evaluation.

Injuring his back after lifting a heavy box of books, Ian went to the doctor for painkillers. He was more concerned about catching his planned flight to Australia for a business trip than his back.

Still in pain on his return to New Zealand, Ian saw his doctor again, who sent him to the physio. With no improvement, Ian went to a back specialist and had an MRI. It was a blood test that brought the definitive diagnosis of multiple myeloma. The myeloma had softened Ian’s bones; fracturing four vertebrae.

“All of a sudden, I couldn’t walk. I was on my back for three months in hospital while they put me on chemotherapy, waiting for my back to heal,” says Ian.

During those first few months, Ian says he and his family were in shock.

“For the first month, I couldn’t say the word ‘cancer’. I wasn’t sure what was going to happen. Our whole world was turned upside down. It took a while to work through.

“Once you accept it, you can move on – upward and forward.”

His family were with him every step of the way.

“My wife really helped me. I was like a baby for the first year. She organised time off work. My daughter was overseas and she came back to help.”

After his back healed, he continued to undergo several cycles of chemotherapy. After a year, he had a stem cell transplant, which took another six months to fully recover from.

During that time, Ian wasn’t working. However, the scientist in him was still seeking answers and very much wanted to understand as much as possible about his disease and its treatment.

“I was very interested every time they took my blood or a sample. I’d ask which lab was doing the testing.”

Ian would challenge his consultant about what certain tests were or weren’t being done.

“We’d have a debate. I had a very good consultant who guided me. Although I have a scientific background, he was the specialist.”

Looking to help future generations, Ian doesn’t mind being a guinea pig for research.

“I want my doctor to poke needles into me to find out everything about me, to find out which part of my DNA is causing the cancer.”

For Ian, it’s comforting and reassuring to understand exactly what is going on.

“When you don’t understand, it can be difficult to get through the challenging times. It makes it easier, and gives me peace of mind to have that extra knowledge.”

In May 2017, Ian returned to work feeling grateful that his employer had kept his job open for him. But he knows it’s important to continue to monitor his condition.

“I’ve been off chemotherapy ever since. I have blood tests every three months. Unfortunately it’s the type of disease that comes and goes. At some point, I will need another round of treatment.”

Ian continues to take every opportunity to learn more, including attending LBC’s Blood Cancer Patient Forum last year and replaying the talks on YouTube.

“It was fantastic. The conference gave me hope. Specialists discussed their work, which is leading the way in cancer research. I enjoyed the discussions about what was being done to improve our quality of life and the great improvements in working to find a cure.”

Ian also enjoys attending the LBC myeloma group meetings once every two months to see how everyone is doing and share their experiences.

“What I’ve gained from the group is that although we all have the same disease, not every medication is going to work because our individual makeup is different. What works for me, might not work for the person sitting next to me.”

Another piece of advice from fellow patients that Ian took seriously was spending more time with family.

“When attending groups, people encourage you to do as much as you can with family because it can get tougher later on.”

Ian has recently returned from a holiday in Samoa, where he has extended family.

“Family is priority now. I enjoy work but I don’t stress. I’m not rushing. I’m more relaxed.”

For now, Ian is planning more travel with family, working on an extension to the house, walking and even fitting in a friendly game of tennis.

Sonya Cuff has lived with rheumatoid arthritis for over twenty years and has always focused on keeping herself as healthy as possible. When she began losing weight in 2008, Sonya didn’t think anything of it until people started to comment that she was too thin and she started to think there might be something serious going on.

Sonya’s rheumatologist noticed her ESR counts were far too high and had her undergo a bone marrow biopsy which showed Sonya had myeloma.

“Before I got the diagnosis I had this feeling that I had cancer. I think in my heart I already knew,” says Sonya.

When Sonya’s haematologist told her she did not need to start treatment right away she decided to travel while she still could.

“I called my brother in Malaysia and said I needed to get out so I headed off to see him then to Abu Dhabi with my cousin and dear friend Sandy,” says Sonya.

It was two years before Sonya needed treatment and she says it was the first time in her life she felt terrified.

“I felt I needed to protect myself as much as I could from broken bones or getting sick. I let it control me and then I realised I had wasted two years and I wouldn’t let myself live like that again,” says Sonya.

Sonya finally started chemotherapy in January 2013, then six months later she underwent a stem cell transplant and struggled with the effects on her body such as weight gain from steroids.

“Of course with the chemo I lost my hair which to me wasn’t the worst thing. I actually still felt like a rock star!”

After her transplant, Sonya’s legs were so weak that she had to learn how to walk again and she looked to numerous alternative therapies while recovering. Slowly, with the help of an acupuncturist, a massage therapist and a chiropractor, Sonya was able to regain strength in her legs and was even able to start practising Bikram yoga once again.

“Seeing a physiotherapist and having acupuncture regularly was incredible for minimising the pain I was in and I was able to get so much strength back in my body,” says Sonya.

The support from not only her close friends and family but also from her specialists has been a huge help for Sonya who says she often struggles to ask for help. Sonya’s chiropractor would often come to her house if she was too unwell as would her massage therapist and her friends were always ringing or dropping by to check on her.

Sonya was in remission for a year before having to start chemotherapy once again and says her mental health suffered hugely from the treatment which lasted nine months.

Although she says she is mostly a fun loving person, Sonya recognised she was struggling and took herself off to a ten day silent retreat in Northland.

“I realised I had a real anger in my heart and after ten days it lifted and I came away with a brighter view on my future. I’m so grateful for the time it gave me to restructure my thinking and realise what was important in my life,” says Sonya.

Sonya also had a lot of support from Amanda, the Leukaemia & Blood Cancer New Zealand Support Services Coordinator in the Waikato at the time, who Sonya says was a ray of sunshine.

Not being able to work meant she struggled financially to support herself and her son but LBC were there to support her with food and petrol vouchers when she needed it.

“Without both the financial and emotional support of LBC I’m not sure I would be as positive as I now am,” says Sonya.

Sonya has also been supported closely by Matthew Eby, the current Support Services Coordinator in the Waikato who she says now feels like a good mate more than anything else.

“Matt is an amazing support. He’s always interested in what I am doing and he always makes me feel valued,” says Sonya.

Sonya now focuses on keeping herself well through her complementary therapies while also taking medication daily.

“For me, doing all these holistic things is about getting in touch with myself so I can then say ‘I’ve got this’,” says Sonya.

Knowing she will always have myeloma does not change Sonya’s positivity since deciding she would not let it control her or her outlook on life.

“I know it will be with me for life but I just choose not to look at it like that. I forget I have cancer half of the time because I always put on a friendly grin and get on with it!”

In 2015, Brendan McKellar found himself in hospital numerous times for small, unexplained issues such as a cellulitis infection. When he had to cut a holiday short over the New Year period, Brendan thought he had a virus that had been going round the family but quickly wound up in hospital again and was diagnosed with pneumonia.

“I was pretty rubbish and although I went home, I didn’t really recover properly,” says Brendan.

When his wife found him slumped over his desk she demanded he go back to the doctors and push for more tests. Brendan’s usual doctor was away and thankfully, the doctor he saw knew his symptoms were unusual. After more tests he was diagnosed with multiple myeloma.

The sudden diagnosis was difficult for Brendan and although he went through all the typical emotions like shock and denial he says he remembers mostly feeling hopeful.

“I knew I was lucky to have access to great medical care and a supportive wife and family around me. I think having that support system is vital”

Brendan’s doctor insisted he start chemotherapy straight away as his paraprotein levels were very high. After five rounds of treatment, his levels came down and he started to prepare for a stem cell transplant which meant he needed to be in isolation for 17 days which he says was really difficult.

“I’m fortunate that the stem cells did take and it was a successful transplant but the process of recovery was very, very hard for me physically and emotionally,” says Brendan.

Brendan gradually got his strength back after making a determined effort to move a little more every day which he knew was helping both his mind and body.

When Brendan was diagnosed, he was always busy with his business and life in general and suddenly he had to pull back and trust his wife to take care of everything which he says took a while to get his head around.

Although he had a lot of family support, it was a difficult time for their family as Brendan’s father was going through treatment for bowel cancer.

“The hardest person to tell was my mum who was supporting my dad at the time.

The first thing she said to me was to not tell my father!” says Brendan.

During treatment, Brendan was prone to infection so he could not visit his dad which made things hard for the both of them. Thankfully, he was able to see his dad in hospice before he passed away.

“I was able to tell my dad not to worry about me and that I would be right and so far I am!” says Brendan.

Now two years on and in remission, Brendan is still trying his best to stay physically and mentally fit and is always looking for ways to improve his health to increase the length of remission.

Brendan has been using different complementary therapies to ensure he stays as fit and well as possible and says in general he is feeling ‘good but not great’ and his blood test results continue to stay the same.

“Because I know I will have this blood cancer for life, knowledge is extremely important. My wife Val and I try and get to all the Leukaemia & Blood Cancer New Zealand support groups especially the educational sessions and the Blood Cancer Patient Forum to learn new things and hear about new research,” says Brendan.

Brendan says it can be challenging from a psychological standpoint knowing he will most likely have to go through treatment again but he says he will have to simply deal with it when and if the time comes.

“It can sometimes be a daunting thought but I know I am doing all I can to stay well and I’m determined to just get on with it and make the most of every day I have!”

When thirty-six year old Chris Longson found himself dealing with a string of infections he didn’t think twice when his doctor wanted to do a few tests. When he was referred to a haematology specialist in Waikato Hospital, Chris couldn’t help but wonder if it was something serious.

“I had talked about my blood tests with my doctor and had a fair idea what they might mean. Being a biologist I guess I was better equipped than most people to make sense of it all,” says Chris.

He was surprised he would be starting chemotherapy within a few weeks and would undergo six months of treatment.

Chris decided to continue working throughout his treatment to save his annual leave for when he needed to recover from his stem cell transplant.

“In hindsight I’m not sure it was a great idea to keep working but I think I got off lightly with the side effects of treatment. There were some days I was pretty wacked out and the steroids made me feel pretty horrible!” says Chris.

Chris knew he was quite young to be diagnosed with myeloma but he realised just how young he was when he started treatment and got in touch with LBC.

“The team at Waikato Hospital seemed to think I was possibly the youngest myeloma patient ever treated there. Then I went to an LBC myeloma support group and I was the youngest by about 20 years!” says Chris.

Although Chris knew that myeloma is an incurable blood cancer he was encouraged by the attitude of his haematologist and medical team who were upbeat about how manageable the disease is.

A cancer diagnosis was something Chris never thought he would deal with at such a young age however he decided to be as positive as everyone else around him.

“I didn’t think that sitting around worrying would help, so although I am always conscious of having myeloma, I just decided get on with things.”

One thing that did cause Chris stress was the uncertainty of not knowing when his stem cell transplant would be. Being a university lecturer, Chris wanted to plan ahead however the date was changed multiple times to ensure he was well enough to have the procedure.

“After worrying about it for months, my transplant ended up happening at the best time. Classes had finished for the summer so I had time off and it meant I was able to recover when the weather was warmer,” says Chris.

While Chris recovered from his stem cell transplant he had plenty of support from his wife and son who came from Thames to stay with him along with his parents and sister.

“I wasn’t very good company most of the time but it was still nice to have them there,” says Chris.

Chris and his wife moved to Thames not long before he was diagnosed but despite not knowing too many people, their local community offered support where they could.

“We had a lot of support from Leukaemia & Blood Cancer New Zealand who helped a lot with things like travel expenses and keeping in touch with my wife in particular which was great,” says Chris.

Chris says he now knows how important it is to recover and ensures he takes time off to rest if he needs to.

“My work has been really supportive throughout my treatment but it’s great to be back working full time and supporting my family again,” says Chris.

Now that he is into a routine again, Chris has looked at his priorities in life and decided to spend his time being with his family and focusing on a full recovery.

“When we first brought our house I thought I had so much to get done but then I realised I would rather spend time with my family more than anything else,” says Chris.

For most of his life Monty Toko would have described himself as ‘bulletproof’. But when he collapsed one night in 2013 and ended up in hospital, he quickly realised he wasn’t as tough as he had always thought.

“I went to the bathroom and the next thing I knew I was in the hospital for three days!” says Monty.

Monty went through what felt like a million tests while the doctors tried to figure out what was wrong with him. Eventually he was told he had to see a haematologist.

“I said what the heck is that? I had never heard of a haematologist before and I had no idea what it meant for me,” says Monty.

When Monty saw his haematologist he was told he had myeloma which they explained was a type of blood cancer.

“I didn’t want to believe it. My younger brother passed away ten years ago from liver cancer so I thought someone else getting cancer in the family seemed so unlikely.”

Monty had only heard of cancers that were related to lifestyle choices, so when he found out there is no known cause of blood cancer, he was even more shocked that it happened to him.

“When I was first told I had blood cancer, my mind just completely shut off. Everyone started talking about treatments and I didn’t really even notice,” says Monty.

Monty always thought he was invincible and admits it took him a few weeks to let his diagnosis completely sink in before he chose to accept it.

Thankfully Monty’s sister was with him and was able to take in all the information and explain it to Monty when he was ready.

Once Monty began treatment he realised that although he knew he was in good hands, he didn’t really understand the implications of having a blood cancer.

“One of the greatest things I ever did was get in touch with LBC and meet Sarah the Wellington Support Services Coordinator. I would be lost without all the help she gave me.”

Sarah joined Monty as a support person in appointments with specialists so she could help him decipher all the medical terminology that he wasn’t too sure about.

“I also started going to the Wellington LBC support group and I realised everyone was dealing with the same things. It showed me exactly why people like Sarah are there, which is to work out the hardest things for us while we focus on getting better,” says Monty.

In order to be well enough to have a stem cell transplant, Monty needed to lose weight which he did with the help of his local activity club and a lot of walking.

Monty now ensures that his health is his number one priority in life.

Monty ended up in hospital for longer than he originally thought while he waited to be well enough for a transplant after being struck down with multiple infections.

“Sarah would pop in and check on me and see how everything was going which was another way she really helped,” says Monty.

Despite taking a while to accept his diagnosis, three years later Monty says it has taught him a lot – not only about blood cancers and myeloma but also about how he chooses to approach life and his illness.

“I read a lot of the LBC patient stories about how other people had coped with blood cancer. These woke me up a bit and I decided to change my whole attitude,” says Monty.

Monty also lives with diabetes so he has found a way to live with both illnesses and looks after himself as best he can.

“I have tests every three months and my doctor is really happy with the results. I know there’s a chance I may need treatment again but if it happens it happens,” says Monty.

Monty has numerous family members who have dealt with cancer and he tries to share the knowledge he has learnt throughout his ongoing journey.

“I tell everyone to always look after themselves, to make the best of the life you have been given and to just be positive.”

Alarm bells rang for Hamilton man Kerry Bisley when he was driving home from Rotorua and fell asleep on the side of the road for three hours in 2012.

The 49-year-old told his doctor that for a few weeks, his body hadn’t been feeling right and things just weren’t gelling.

“They told me I had a sleep apnoea, but then a horrendous pain began in my back and I went to the emergency unit at Waikato Hospital. They said I had kidney stones.”

Then Kerry received a call from his doctor telling him he had stage four myeloma.

“I sat in my car for an hour,” says Kerry.

I was thinking, I have a wife and a 13-yearold daughter, my life has turned upside down.

While he was lost in thought he received a call from a good friend in Australia.

“He knew immediately something was wrong, so he became the first person I told,” says Kerry.

“My friend said to me “just remember you can’t kill gorse with weed killer”.

Kerry then got in touch with Leukaemia & Blood Cancer New Zealand (LBC) where he started attending the Waikato Myeloma Group to find out more about the disease, but what he found shocked him.

“For the first support group I walked in and I was looking around thinking I had come to my mother’s house for tea. Most of the people were quite a bit older than me and even asked me who I was there with. I had to tell them I was there for me.”

Kerry says it was then that he realised he was very young in the myeloma world with many thinking it was an “old man’s cancer.”

“I’ve learnt a lot from people who have had it for a long time. I knew nothing about myeloma, what better way than to learn from people who have it themselves?”

Kerry, a natural people person, found that cracking jokes became his coping mechanism, but the problem he faced was making those outside of his support group feel comfortable around him.

“When I was younger I realised that people never know what to say to someone who is sick,” says Kerry.

This motivated him to send a text message to everyone in his contact list in the early hours of the morning only a few days after being diagnosed.

It said ‘I have stage four myeloma’ if you want to know what that means go to www.leukaemia.org.nz

“That gave people a chance to find out for themselves, so when I talked to them they were asking questions about it and felt a lot more comfortable with me.”

This willingness to share his journey led him to join Facebook with the help of his daughter Ellen, where he had the chance to connect with all of his old navy buddies.

“Every Thursday before chemo I’d draw pictures and post them on Facebook along with an update on what had happened that week. It helped people deal with what was going on. It got to the point where if I missed a post I’d be getting phone calls on Thursday night asking if everything was okay.”

After 12 weeks of chemotherapy Kerry had a stem cell transplant in February.

“My 13-year-old daughter Ellen was my rock. She used to give me my stem cell injections.”

Kerry says getting sick also made him really appreciate his family.

“When I was in hospital I used to wake up from a nap at 4pm and Ellen would be sitting there doing her homework. She’d be there for hours a day, my wife too, that was really important to me.”

By May Kerry was back at work full time and hitting the gym three times a week.

“You have to tell yourself, “I have a disease, but I’m still me”, Kerry says. “I just take things a bit slower, but I just carry on and make it known.”

Social media was a huge help for me. It helped to let people know I was ok to talk about my blood cancer and it helped them to understand it better too.

Kerry’s next challenge is to take on Lake Taupo in the 2015 Lake Taupo Cycle Challenge with 14 of his friends, family and colleagues joining him for the ride.