I had a siezure back on the 4th June 2021, and I was diagnosed with a grade 3 Oligodendroglioma. I then had surgery at Kings on the 21st July 2021. 70% of the tumour was removed and I was sent home to recover. I then had six weeks of radiotherapy and then had a break over Christmas 2021, with the plan of starting Chemotherapy in the new year.

I had one cycle of chemo in January 2022 before I had to stop, due to my ALT levels being too high. I then had an ultrasound which revealed I had, Non alcoholic fatty liver disease. I also had psoriasis previously, which since my diagnosis, has developed into psoriatic arthritis. 

So, from the end of January 2022 to December 2022 I've received no cancer treatment whatsoever. And for that whole year they couldn't work out why my ALT levels were so high.

So, as I now have epilepsy as a result of the tumour, they weaned me off some my epilepsy meds (Epilim 250mg), then they took me off the steroids (Dexamethosone 1.5mg) but my bloods kept coming back the same, elevated ALT. They then lowered my other epilepsy meds (Keppra 1000mg down to 750, then 500) to see if that would make a difference. Then due to negative side effects (aggression, memory loss, depression, etc) from the Keppra, they put me on Brivaracetam (still have some side effects, but nowhere near as bad as the Keppra) But again, after all these changes, my ALT levels remained high. 

(Side note -During this time, I'm getting fairly regular MRI tests done, which keep coming back saying "its stable and not moving". I had an MRI on the 16th August 2022, and my oncologist said it was under "excellent control with no sign of progression" I then had my next MRI on the 29th November 2022, which came back as "no progression and under control.")

Finally in September 2022, my GP decided to get all my bloods checked, instead of the specific ones my oncologist was asking for. It came back that I had a vitamin D deficiancy ("below 12"). They put me on a course of vitamin D3 3,200 supplements, and by December 2022 my bloods came backing saying my ALT levels were back to normal ("normal range"). My fatty liver symptoms have cleared up, and along with some Enstilar, my psoriasis has cleared up and my joint and muscle pains, while not completly gone, have subsided substantially. Fortunatly during this time my epileptic seizures have also remained under control. 

So I assumed that I could now restart Chemotherapy as we had finally got to the bottom of all these other problems. I emailed my Oncologist asking this and recieved an email back saying - "At present we would not restart chemo. We would just monitor with MRIs. If there was a problem on a scan or you rang with a problem that's is when we would reconsider chemo. We have no evidence your tumour is growing, so we will potentially be using a chemo that is not working on the tumour but giving you side effects. Also, the longer your liver has to recover the better, it means any chemo can be given when needed. Hope all of that makes sense." 

In all honesty, it didnt quite make sense to my laymans ears and I felt quite deflated and disappointed, as my mission for 2022 was to get all my side issues sorted out, so I could start Chemotherapy.

So I guess what I'm asking is, does this all seem pretty regular, standard stuff, or do I have cause for concern?

Sorry for the long rant, and I hope it at least makes some sense. I've just been a little stuck recently and not sure who to ask about this kind of thing.

Thank you,

Aaron.