A Long Overdue Update:

It’s been over two years since I have made a post and a lot has happened in that time, but little to do with my lymphoma or treatment until recently. I guess that’s a good thing as it means I have been mostly well and according to my Haematologist maybe even cured. That of course doesn’t mean that anxiety doesn’t kick in, especially when things don’t seem to be going well health wise. In fact at my previous visit with the Haematologist I had discussed how my fitness seemed to be declining and according to my sports watch my heart rate, while exercising, was much higher than it should have been. She sent away a referral for me to have an echo cardiogram to see if there was any damage from my extensive treatments.

Sarah and I recently took a trip to the UK and Ireland the first time I had been back since my family left this house in 1971 and emigrated with my parents to New Zealand. It’s hard to believe that almost 53 years has passed since and I have never been back. A few days before we left I started to feel the symptoms of a heavy cold and tested myself a couple of times, for Covid, which thankfully came back negative. So I figured I would recover within a few days.

First stop, in Singapore for three nights to break the journey, rather than try and fly 24 hours straight. My brother who had been there recently had warned me about the humidity and he wasn’t wrong. Coughing and spluttering, I thought I did quite a good job of getting around and taking in some of the must see attractions on offer. Then it was back to the airport and onboard British Airways for the second part of the journey. My one take-away from this is next time I will fly with another airline, the service and food were terrible and the plane cramped and uncomfortable.

We had decided to fly straight from london to Ireland and spent eight days there seeing the sights. We also stopped in a small village (Castleisland) where Sarah’s great grandfather hailed from before emigrating to New Zealand. There is a memorial in the local rugby club that celebrates him being one of the very first All Black’s (NZ’s national rugby team). All the time we were in Ireland my coughing and spluttering continued with fatigue starting to kick in more than normal during the day. I should also mention that my appetite was also vanishing.

Back in the UK the holiday continued taking in a lot of the major attractions in the south west and London. At the same time my “cold” continued to cause issues with my health. I was losing weight, fitness, suffering occasional night sweats and struggling to keep up with Sarah. After four weeks in the UK it was time to head home via Shanghai and sadly another less than satisfactory BA flight.

We had arranged a couple of tours while we were in Shanghai thinking this would be the best way to see the sights. After a short tour the first afternoon we had booked an 8.30am pick up on the second day from the hotel. This full day tour would take in six highlights of Shanghai. Normally an early riser I woke absolutely drenched from night sweats and to the sound of the room phone ringing, to say the tour guide was waiting for us downstairs. Thankfully the guide was very understanding and we had time for a quick shower and breakfast before heading out. Two attractions and a couple of hours later the tour was all over. Sarah had noticed that I was wilting and looking decidedly unwell so it was back to the hotel.

As part of my ongoing clinical trial I see my Haematologist every three months and an appointment had been set for two weeks after we return. Thinking that she might want to organise some tests. I decided at Sarah’s insistance to email my Haematologist and update her on my situation. Not long after sending the email I found some scales in the hotel bathroom and not having weighed myself since before we left I was stunned to see the scales register 65kg well below my usual weight of 78kg’s. Although that didn’t seem correct it only added to my concerns about my health. Arriving back home it was good to see that my weight was actually 73kg’s still a significant loss in five weeks but nowhere near as bad as the fright I had in China. There was also an email from my Haematologist telling me not to worry and she would organise any tests needed when she saw me in a couple of weeks.

A couple of days after getting home I had a call from the cardiology department to see if I could make an appointment the following Monday. Then a day later I had a call asking if I could make an appointment the following Friday for my 14th PET scan. I actually thought that the scans had finished at the two year mark. The gods really must have been looking after me as this would mean that my Haematologist would have all the results needed when I saw her so any issues could then be looked at. The gods continued to smile when I arrived for the cardiac appointment to discover that I was seeing one of the most senior doctors there. They not only examined me but also completed the echo cardiogram and then stuck me on the treadmill. Both of these tests I passed without issue, so probably not much wrong with the heart. Great news!

It turned out that the PET scan was clear as well! So 30 months after undertaking the trial for Glofitamab I am lymphoma free. I loved my Haematologist’s answer to the question of, “if I was cured”. The answer being that only when you die of something else will you know for sure that you were cured.

So all the symptoms (Weight loss, fatigue, night sweats, loss of appetite, cough etc.) I’d had for seven weeks were probably just a severe chest infection which according to the Haematologist isn’t that uncommon. So, good news and I can stop being anxious about my health. Although in six months time after my 15th PET scan I will probably feel just as nervous when I am sitting in the hospital waiting room waiting for the results.

One final word, It’s good to see that Glofitamab is now FDA approved. It saved my life and I will be forever grateful for the chance to participate in the trial.