1 year update chemo, radiotherapy, surgery.

Ben's Brain Tumour Blog · 12 months ago · 79 views

Its been over a year since I last posted, sorry about that.in June to August 2018, I had 60gy of radiotherapy to my brain (32 days of treatment) with concurrent temozolomide, lost my hair in the areas which were close to the radiotherapy beams, but hair grows elsewhere. this was nauseating, unpleasant and increased my seizure activity, however, it was tolerable and wouldn't hesitate to do it again if advised.since then, I've been on a cycle of higher dose chemo (380mg p/day x5 consecutive days) every month for the year till today. this was also fairly tolerable once I had found my own way of doing. you're recommended to take at night before bed. however, I rarely slept well doing this. so I changed to taking it on an empty stomach in the morning and fasting till lunchtime minimum. this allowed chemo weeks to be very tolerable (provided I had enough rest) so I didn't work during chemo weeks. the week following chemo tended to be the worst week each month, frequent illnesses, always extremely nauseous.Fast forward to two months ago I had my first post-treatment scan which wasn't favorable. treatment hadn't worked was the outcome. however, we do not know what the scan would look like without treatment. I don't have a copy of the scan yet to display, however, it had grown further, the high-grade area had grown, and there were large cysts in the frontal lobe due to radiation most likely. a follow-up scan was requested which I have not seen the MDT in wales suggested another surgery, whereas London suggested as I was physically well despite the increasing tumour we could wait.I had a second scan last month (May 2019) which I haven't seen but my doctors have, London is now also suggesting surgery (seeing my oncologist and surgeon in London next week). I'm not surprised by the way things have gone at all. ever since I learnt about the PTEN gene in my tumour and its resistance to treatment, I wasn't realistically expecting any results. I was always optimistic on the surface but I'm not sure how deep that went. its challenging to trick your own brain into fully believing something you want to believe. Another factor was my non-adherance to the diet that so many brain ca patients seem to do so well on. (ive seen some people have their tumours shrink on keto alone). keto when your constantly nauseous from chemo wasn't easy and I just let it go.Apologies again for taking so long on an update. I've been very unmotivated to live in the part of my brain that thinks about cancer and treatment, and therefore the blog has not been considered important for too long. right now i have to go back into "the cancer/treatment world" so the blog is back on. I understand that I haven't gone into a lot of detail about the chemo and radiation, so i will answer any questions if there are any, i know most people private message me any comments or questions which is fine too!ciao for now :)