The journey to transplant and recovery

Written by Alan McIntosh, QLD

My journey began in November 2021 when I experienced chest pain. At first, my local General Practitioner (GP) thought it was muscle strain. It continued for a couple of weeks, and I was sent for x-rays, blood tests, CT scans and an MRI, but nothing was identified. It wasn’t until it became much worse with the added fatigue in June 2022, that my GP arranged an appointment with a specialist. However, four days before that appointment, I went back to the GP to get a doctor’s certificate for work. As it was becoming too hard to function, I was in the waiting room and I collapsed.

Due to the coronavirus and delays in ambulances being dispatched I was advised to have my wife drive me to the private hospital. I was immediately admitted, with blood tests taken, scans completed and given some pain relief. Within about half an hour of my admission, I was told I had myeloma – never heard of it before. I was told, “you’re a very sick man!” – that is when it hit me, the gravity of the situation.

That night in hospital I had no idea what was happening to me. My kidneys had failed, my liver was damaged, and I had a split sternum (due to boney lesions) and three compressed vertebrae. It all makes sense as to why I collapsed in the first place.

I was given some medications, and I remember having strange dreams during this time, maybe even hallucinations. These hallucinations included me playing at a rock concert in my head, with every note perfect and every image so vibrant, so much so I felt like I was there. Rocking out to Pink Floyd, Eagles, and Led Zeppelin. When it came to Phil Collins’ ‘In the air tonight’, I found myself banging so heavily on my legs as though they were the drums, I realised I needed some help to sleep. The nurses assisted me with that, and so I fell asleep with no further concerts.

I was quickly transferred to another hospital, and two days later began radiation treatment, targeting my sternum. After about another 3 weeks I was able to go home, now on eight tablets a day. They made everything taste like chewing aluminium foil, particularly the Lenalidomide. I had no real sense of taste. Even Pizza was not appetising anymore! A cocktail of tablets and weekly visits to the local hospital for intravenous immunoglobulin (IVIG) became part of my life.

The plan sounded simple: gather my strength, harvest (collect) my stem cells, then undertake an autologous stem cell transplant. My stem cell harvesting was scheduled for mid-November and the transplant for early December. I began all the usual pre-transplant activities including having to inject myself with GCSF each day for a week to stimulate stem cell production. I had been told to expect bone pain from the GCSF injections. I didn’t experience the pain and naturally began to worry it hadn’t worked until the night before my harvest. The bone pain hit and became unbearable. It happened like a switch being turned on. Each heartbeat brought excruciating pain. Crying out brought a doctor to prescribe morphine at about 3am, I slept well after that.

The stem cell harvest took about three hours: sitting still, watching TV, while the apheresis machine cycled three times through my body. Three bags of stem cells were collected. On December 5, I arrived at the hospital and had a central line inserted into my chest. This experience was painless for me. On December 6, I was given the chemotherapy melphalan that wiped out all my white cells – again, painless. On December 7, nurses brought my frozen stem cells to be thawed in warm water and hooked them up to my central line to be returned into my blood stream. The preservative added (called dimethyl sulphoxide or DMSO) to the stem cells when they were frozen had a terrible taste. The whole process took about an hour; it all felt a little anticlimactic.

Then three weeks began in one of the hospital’s semi-isolated rooms, while my body rebuilt its immune system. The stem cells rebuild white cells by making their way to the bone marrow, where they settle and develop into new blood cells (this process is known as engraftment). Your white blood cells are monitored through a daily blood test. I felt like a newborn – hairless, vulnerable, with no immunity even to a common cold. Three weeks of boredom, and for some, you then get to go home. But for me that wasn’t what happened.

I was told I could be the poster boy for myeloma because everything was going along so smoothly. You are told in detail when to return to the emergency department if anything was to happen and after ten days, I began shaking uncontrollably and was rushed to the emergency department and then to the intensive care unit (ICU) because I had temperatures above 38 degrees and had uncontrollable shaking. My body had gone into shock. My heart had to be put back into rhythm three times to bring it back to a regular rate.

Five days later I was well enough to be transferred to the ward, this was three days before Christmas. I was too weak to walk, and it took everything I had just to get into the shower on Christmas Eve. I pushed myself to gain my strength back. Slowly but surely, I was discharged on New Year’s Eve 2022.

Today, I’m in remission. I still receive monthly infusions of IVIG. I look forward to these visits; I get a nice lunch, sit back in a comfortable chair for three hours, the opportunity to speak with some amazing nurses and an update from my oncologist.

Myeloma is roller-coaster. It’s painful, unpredictable and frightening, but there is also hope. It is a complex disease, and it can be scary as hell, but there is a light at the end of the tunnel. Don’t EVER give up. Ask questions. Seek information. And above all: trust the healthcare workers.