Proton Therapy (Spain)

Hi everyone,

Its been a while since my last update and I know some of this might not be relevant to you in the UK as the treatment options are often different, but I thought it might be good to put it here in case it is useful to someone one day.

My girlfriend (36) was diagnosed in June 2023 with GBM and it was inoperable due to its position adjacent to some damaged tissue from a previous injury. She was rushed to hospital after a blackout and dangerously high blood pressure. She was stabilised and the medical staff took the unconventional decision to implant brachytherapy (high-dose radioactive seeds) around the tumour. The radioactive dose was extremely high and was planned to last 3 months before reabsorption of the seeds. It was a very rough summer for her - unimaginably painful headaches. At the end of September the results were promising and the tumour appeared to have all but disappeared. This was very good news but came at a high price to her overall health - several different organs affected, Kidneys, gall bladder, a hernia, crippling headaches, multiple thromboses and generally weakened. The medical staff decided to do nothing else for a while and to monitor the situation while she recuperated from all the side effects.

With one thing and another (the machine kept breaking), the next scan didn't happen until Christmas Eve. In the meantime her general health had continued to decline rather than improve, strong headaches, inability to sleep, hardly eating or drinking, very high blood pressure. The results of the scan came back a few days later and showed that there was a new growth spreading across the top of her head but that also the original tumour above her left ear had also started to regrow.

They took the decision to give her proton therapy at this point. She had to miss the first few appointments though as she came down with the flu which knocked her for six (temperature went up to 42.3). Thankfully she was able to recover from that and started to get proton therapy from mid Jan. It only takes about 5 minutes but leaves her feeling quite ill afterwards. They planned to do this every other day. Last week they decided to also add some chemo, Temozolomide which I have seen people refer to here (TMZ?) and after a couple of additional sessions they also decided to add Dianhidrogalacticol (which I'm not sure if I've heard anyone talk about).

In each of the proton therapy sessions, the machine also takes a scan to track progress. In the session on Sunday they also added a contrast for better visibility. She was due in for another session today but they called earlier to say they are going to have to change course as the scan showed its not going well.

So from tomorrow they are upping the dose and frequency of proton therapy and I think they also said adding neutron therapy, though I might have misunderstood that. They are moving this to daily sessions rather than every other day and adding additional chemo tablets to the mix as well as the intravenous dose she is already getting. It sounded like they are moving to a last ditch effort to stop the spread, throwing everything they've got at it. I can't imagine how she's going to cope with that as she is already feeling so ill.

Such a hard road to walk, she's still making plans to start her business, my heart is breaking.