I’m now on week 18 of the 2 year ModiFY trial. Time for an update.
The first 2 months were hectic with appointments most weeks. Since September the injections are every 12 weeks. But there are so many check-ins with the same questions, and answers!
My answers are mono syllable. Same. Yes. No. I get the impression that trials aren’t normally like this. There are usually side effects to discuss and feeling bleugh. My check-in appointments (not the treatments) are really quite quick now and I can be in and out in 30 minutes which is pretty impressive.
There have been a lot of adjustments to the new processes with the Trial team. The best is that trials are in a separate area which means there isn’t the contention, constant beeping of machines common in every day unit. Also, I haven’t seen an emergency (bad reaction) since I’ve been in Trials, but they were a regular occurrence before. The consultants walk in from time-to-time too which never happened at the day unit. Sometimes long conversations happen with the consultants and I fear for patient confidentiality. Now they know me, I don't get a patient wristband very often either.
My body has become more acquainted with the meds now and the skin reaction is not so bad. I still get a significant scab though and they linger for ages. All vaccine sites are still visible, even the first ones from June.
I had a CT scan in August. The results were a shrinkage of 1mm to the primary tumour., categorized as inconclusive. 1mm is within measurement error margins and we don’t know whether this is attributable to the continued response to the nivolumab or the modi-1 injection, or both.
The next scan was the beginning of October. The results are the same – another shrinkage of 1-2mm to 23mm. It’s clear now that we’re not going to get any significant shrinkage attributable to Modi-1. That doesn’t mean to say that there aren’t long term benefits for other metrics, like overall survival (yes please)!
I have found that I feel normal on another level. I’ve noticed my appetite has changed and I am so tempted to eat crap again! My onco says this isn’t surprising as you would expect vaccines to impact the body system.
The dry mouth is better. I now go out without clinging to a water bottle. I think this improvement started before modi-1 though. This could also be stimulating the consumption of biscuits as being saliva deficient is a right turn-off.
Finally my onco was asking whether I felt I would continue with the treatment, given that it wasn’t shrinking the tumour. I was most surprised to think this might even be present in his mind! I saw it as a commitment to 2 years and nothing has happened to alter that view.
