It’s one thousand eight hundred and thirty nine days since a CT scan revealed that I probably had lymphoma. A battery of tests followed including an abdominal biopsy which confirmed follicular lymphoma. Like a lot of people I underwent six rounds of R-Chop chemotherapy a common first line treatment and then spent a couple of years in remission. Then in late 2018 a CT scan showed a probable return of the lymphoma in my chest. A biopsy performed in early 2019 confirmed the return and sadly also led to surgical misadventure damaging my phrenic nerve causing the loss of half my left lung. Spending the next twelve months watching and waiting I restarted treatment in January 2020 after a significant lump appeared at the base of my neck.
Since then I have been through four failed chemotherapy regimes including an autologous stem cell transplant. Throughout these treatments I believe I have maintained a positive attitude only really thinking about giving up once. Even at that dark moment in time while difficult to deal with I don’t think I had truly abandoned hope. Perhaps some of this was to do with my haematologist who always seemed blunt but positive. Convinced that the next treatment would be the one to knock things into remission.
Even the day, recently when he told me my lymphoma had transformed to DLBCL and this wasn’t a good thing. He still seemed enthusiastic about possible clinical trials, confirming that at least two might be suitable for me. A battery of tests confirmed my eligibility for a trial known as BGB-11417 a phase one trial for a new monotherapy to be taken in pill form. However the transformation of my lymphoma pointed, in the opinion of the doctors, in a different direction.
The doctors are a group of hospital haematologist that meet on a regular basis to discuss the more “difficult” cases such as mine. Collectively they decided that the trial of Glofitamab a T-Cell bispecific antibody offered a better chance of achieving a response. Whilst only a phase one trial here in New Zealand there are already published results from trials in the USA. These trials show a complete response rate somewhere between 32 and 53% so if you look at those as a blunt number I have between a one in three or one in two chance of a complete response. Lets not count our chickens yet, there is still a long way to go but those are very encouraging numbers.
One reason for optimism with this trial is that it works on a completely different basis to chemotherapy. The idea behind the drug is that it binds itself to the proteins within the lymphoma allowing the bodies own natural defense system (white blood cells) to attack the invader. Something that they have been prevented from doing by the way the lymphoma grows within the system. The other major advantage of this trial is that aside from the danger of a fairly significant side effect at the start of treatment it is much less invasive than chemotherapy. It also provides for a mostly side effect free time between treatments allowing patients to lead a normal life, well as much as can be with cancer.
This week is the start of the trial proper after the infusion of Obinutuzumab last week. Aside from being completely unpronounceable it’s also designed to clean up the lymphatic system and prepare it for the dose of Glofitamab. This trial is a phase one trial using an escalating dose so the first infusion would be a whole 2.5mg or 25 milliliters to put this into perspective as to how small the dose is I weigh 10,300,000mg. So an almost infinitesimal amount compared to my body weight. This is infused over four hours so slow incase of adverse reactions. But this also caused the situation where the first hour of infusion was probably trapped inside my PICC line. As the dose is so small the bag actually comes with 50 milliliters to allow for eventualities such as this so once the nurses had disconnected the Glofitimab they ran the saline at the same slow rate for one hour to empty out what would have been caught in my PICC line. Then ran for a further 15 minutes to provide a proper flush.
It’s here that in my imagination I can write about my body crashing due to the Cytokine Release Syndrome and the crash cart being wheeled out. But this didn’t happen in fact the side effects of the treatment other than another rather boring night in hospital amounted to zero. My night in hospital was spent in the Cancer Trial Centre in their own little room where I was the only patient. A nurse was brought in especially to look after me and although he could have had a very busy night if the crash cart was needed it was very uneventful, thankfully.
Staying in hospital for 24 hours after the infusion is part of the protocol to ensure you are in the best place if the side effects do present themselves. Thankfully nothing happened and I spent a rather boring day looking out the window and reading before heading home around 3pm. One thing I did do was take advantage of my notes being left behind in my room and have a good read of my case history. I knew that after the transformation from follicular lymphoma to DLBCL that it had not also changed to what’s called double hit lymphoma which would have been seriously bad news. However I did discover that I now had what they call a double expressor lymphoma which in the words of a couple of studies, I have since looked up carries a “dismal prognosis”. So here’s hoping that this trial does the business.
As I said earlier in this blog this dose was tiny. The protocol is for step up dosing so I return next Tuesday for 10mg or 100millilitres to be infused. Then the week after that I return again for the full dose of 30mg or 300millilitres. They say that if you are going to have a reaction to the Glofitamab it’s most likely to happen in the first two doses even though they are the smallest given. So I got through the first here’s hoping I get through the second without incident. Then after that the cycle runs on a three weekly basis which hopefully should allow some form of return to a normal life.
One of the reasons for publishing this blog is so that others experiencing the same or similar treatment might feel like sharing what’s going on with them. So please feel free to make comments or email me direct firstname.lastname@example.org with your story.