I had been pretty well my entire life, so it was definitely a bit weird when in May 2008 I started to get night sweats. They started out as one or two minor ones, where I’d wake up at night and my shirt would be a little bit damp. However, it got worse and worse, to the point where I’d wake up completely saturated 4-5 times a night, and I’d have to lay towels down to sleep. With it came weight loss and appetite loss. During this I went to my GP to try and work out what was going on. He told me it could be leukaemia, lymphoma, or glandular fever. Blood tests showed that I was sick, and ruled out leukaemia, so we booked a CT scan on a Monday afternoon. By the time I got home from it there was a call waiting for my GP to call me straight back. It was pretty clear what he was going to tell me.
I still don’t know why but I actually laughed when I got off the phone with him. As much as I knew lymphoma was a possibility, maybe it was still the overall shock of it all. I calmed down though and told my mates the next day.
Anyway, a biopsy was booked in July and it confirmed I had Hodgkin’s lymphoma. This, at the time, was good news – Hodgkin’s is a very curable disease compared to some forms of non-Hodgkin’s. A subsequent PET scan put me at stage IIB (i.e in multiple spots above the diaphragm, with symptoms). I had a huge mass in my chest (where they took the biopsy from), and literally dozens of tumours through my neck and shoulders. As Hodgkin’s is a slow growing disease, the doctors think I could have had it for up to 5 years before they found it. I was just so fit from swimming that it masked it.
Anyway, I started chemo in August. I was given 12 doses of ABVD chemotherapy (one dose every 2 weeks) which finished up in January 2009. They say if you can get through ABVD you can get through anything. It’s a feeling you cannot describe, but I’ll just say it’s horrible. I’d spend a week recovering, and then a week feeling fairly good, good enough to work. Anyway, I was lucky enough to respond really well, and by the end of treatment I had achieved a complete response i.e was clear. However, as I had the large chest mass when I was initially diagnosed, I was given 3 weeks of radiotherapy in April 2009.
In the meantime, I started getting fit again, worked, and went back to uni part-time for the semester. Things were going really well, and whilst I had told myself that my upcoming June scan could be bad, I also thought it was extremely unlikely due to how well I’d responded and how well people generally go on ABVD. It was a bigger shock when that scan came back positive than my initial diagnosis. But, I woke up the next day fine. There was no point in having a whinge, that wasn’t going to change anything – we just had to get on with it.
They had to biopsy me again, to make sure it was Hodgkin’s, as sometimes it can morph into forms of non-Hodgkin’s. Biopsy results were inconclusive, so I was treated on speculation. The plan was this time to give me more chemotherapy and then what is called an autologous stem cell transplant. Basically this is where, after having my own stem cells harvested, my immune system gets completely wiped out by high-dose chemo, and then ‘reset’ by having the harvested stem cells injected back into me. This began in July 2009. I was given 3 doses of MINI-BEAM chemotherapy (each dose administered over 7 days), and a dose of Cyclophosphamide for my stem cell harvest. I was scanned after this treatment and was clear. Just before I was due to have the autologous transplant, I became sick which required hospitalization, and required surgery unrelated to the Hodgkin’s. By the time this was completed in October 2009, I noticed a large lump in my neck. I knew what it was straight away, and a subsequent biopsy and PET/CT scan confirmed relapsed Hodgkin’s.
Treatment plans changed and I now needed more chemotherapy before I received the autologous transplant. This started in mid-November 2009, and chemotherapy was changed to 4 doses of IGEV (each dose administered over 4 days). The first dose was given at normal dosage levels. The second dose was given at 125% of the normal dose, whilst the last 2 doses were given at 150% of the normal dose. I was scanned before the transplant, was clear, and then received the transplant (which was coupled with 6 days of LACE high dose chemotherapy) in early February 2010.
It takes a lot longer for the body to recover after a stem cell transplant. Sometimes, it never fully recovers. So, getting fit again seemed a lot harder than before. But, after a month or so, I was going pretty well. I was back at work too, and I was ready to head back to Uni in semester two.
My first scan post-transplant was in May 2010. Leading up to it, again I was confident, but I did know, given my relapse history, that this could show relapse again. When it actually did though, it was still tough to hear. That said though, I again woke up the next day pretty good. It was like the previous two times – I just accepted it.
I was scanned again in July 2010, where further evidence for relapse was found. The spots were deep in my body, so I underwent an open lung biopsy in August, and all samples taken were positive for Hodgkin’s. The treatment plan was to have 3 more doses of IGEV (all at normal dosage), before being given what is called an allogeneic stem cell transplant. This is what most people refer to as a Bone Marrow transplant, and it basically is the same thing as an autologous transplant except with another person as my stem cell donor. The theory is that a new immune system might be able to fight off the cancer.
In order to find a donor, my blood had to tissue typed. What is interesting is that blood type is irrelevant (mine has actually changed as my donor was a different blood type to me). I was lucky enough to have two complete matches. One was a 39 year old mother of five from Australia, the other a young man living in Germany. The German man was chosen as women that have had children have a lot of antibodies in their system, can create an increased chance problems post-transplant.
Post IGEV I underwent a number of scans. I was completely clear and all my organs were in perfect working order. The transplant was done at Westmead Hospital on November 19, after I received 6 days of high dose chemotherapy. I was released 13 days after transplant, and had a relatively smooth recovery.
I wasn’t able to do much for a while. The recovery here was on a totally different level than the autologous transplant. But I don’t think I’d ever been more nervous in my life before getting the results of my 3 month post-transplant scan in February 2011. That said, I felt different about this one. When it came back clear, I don’t think I’d ever been happier in my life. It was a good day.
The doctors gave me the all clear to enter the pool again, get fit, and go back to work, so I did. Again, getting fit again was really tough, and on another level compared to the autologous transplant. I began by running and doing some gym work before I hit the pool. I remember only making 500m on my first run before being completely smashed. However, I kept at it, and soon I was running 4km in under 22 minutes – which, after only a month or so, and given what my body had been through, was pretty good. At this point I got in the pool. I managed 500m on my first swim and it hurt like hell. But within 6 months I was working 30 hours a week and swimming 30kms a week. The doctors hadn’t seen anything like it before.
I kept this up until my 12 month scan in November 2011. I remember sitting there nervous again. Being perfectly honest, I had a bad feeling about this one. I don’t know why, I just did. It turned out my instincts were right and I had indeed relapsed again.
The plan was to give me what’s known as Donor Lymphocyte Infusions (DLI). When they give you the donor’s cells for the allogeneic transplant, they don’t give you all of them – they keep some. A DLI is where they give you some of the donor’s left over cells, in order to try and evoke a reaction within you to remove the cancer. I was given one in December 2011 and, after another scan showed more spots, one in February 2012.
About a week after the 2nd DLI, I developed a cough which worsened quite rapidly. I went downhill pretty quickly – I had little to no energy, and slept a lot. A CT scan of my lung in March 2012 showed large masses in my lungs, but the doctors were not sure what this was. They started me on a steroid called prednisone, in the hope that that would take care of it. A subsequent lung CT in April showed little to no improvement in my lungs. However, I was kept on the prednisone.
I underwent a number of bronchoscopies to try and diagnose it, but all results came back as inconclusive. So, I received another open lung biopsy In July. Initial pathology results showed it likely to be either a rare spindle cell tumour or a pseudo-tumour. A pseudo tumour is a fake tumour, and most go away, but a spindle cell tumour is lethal if it has spread to the lymph nodes. However, as this prognosis was not certain, my pathology results were sent around Australia to look for a more set diagnosis. Following this I was weaned off the prednisone. Within 3 weeks I discovered lumps in my neck, and began to lose energy extremely quickly again. My lungs got worse –x-rays should they were just about full of whatever it was. It got to the point where I couldn’t get out of bed, and if I did, to get around I needed a wheelchair. Due to the lumps I was booked in to meet with a surgeon on September 17 to get them biopsied; however on September 10 I received a call informing me that pathologists in Westmead and Perth had diagnosed my slides as recurrent Hodgkin’s.
This was a relief more than anything. It was a tough 6 months physically, and the inability to diagnose it was frustrating. Also, despite the fact that the diagnosis made me incurable, the fact was that there were options, unlike if it was a spindle cell tumour. This diagnosis rendered the surgery irrelevant and the appointment for the 17th was cancelled. The doctors have strongly recommended Brentuximab as my treatment option due to its limited side effects and clinical trial results. At the time I’m writing this I’ve had one treatment. It went really well – I walked out feeling fine, which is not what I’m used to when getting treatment. I’ll be getting scanned soon, and that will give us a good indication of if this drug is working. I’m personally confident I’ll get a response, but with my track record, there’s a bit of nerves as to how long the response will last. Only time will tell.