1 year update chemo, radiotherapy, surgery.
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 :)
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 :)
I completely understand that you don't want to live the cancer thing day in and day out, but that now you are forced back to it. I get it. I'm not suffering yet, though actually melting down over a sudden, unexpected tax review of my corporate taxes (for tiny corp.) for which we can't afford an accountant, but for which I do the taxes and did them incorrectly for several years. It makes me crazy and so nervous. My brain cancer isn't my biggest problem, but today it is. I just felt the strong need to reach and tell you I'm thinking about you and hoping for your best.
ReplyDeleteHello viewer’s
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Thank you for updating even after a year of silence. I have been following your story since the beginning of this blog and am hoping for a good outcome for you after all of this.
ReplyDeletePlease do keep us updated in the boundaries of your own wellbeing.
Hey Ben, I just read your blog and think you’re amazing for updating it when you don’t always feel like it! I recently had surgery for a brain tumour (which I share a recovery blog about with fam/friends on beautyinthebrain.com) but even though my journey hasn’t been as difficult as yours, I constantly live with the chilling realisation that I could have easily become one of the terrifying statistics myself so I want to continue to raise funds and awareness to help others. I know it’s much much easier said than done but be positive and patient, you’re doing amazing and you’re not alone. I’m wishing the best for you. Sammy x
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Thank you for sharing your story with us. You've got a lot of guts. May you keep in good health and good spirit. Thank you so much for posting, please do keep us update. If any person is going through the same, please do contact the best surgeons in Bangalore, for best treatment BRAINS Hospital in Bangalore visit BRAINS Hospital.
ReplyDeleteYou should pour out your grief more often in the blog. Happy to know you have been surviving the deadliest cancer very bravely. Your experiences will be of great inspiration. I'm not too sure of my friends condition who is under treatment with a Neurosurgeon in Chennai . I will let her know of your experiences.
ReplyDeleteHello viewer’s
ReplyDeleteI don’t have much to say there are so may scammers going on online so we cant detect the real herbal medicine doctors. Thank GOD for leading me, please don’t ignore this post is real Dr Emmanuel, is a real herbal Doctor, he cured me from Brain tumor, i am living so happy and free , i was fully recovered within 4 weeks of usage of dr Emmanuel herbal medicine ,please viewers out there that have any deadly disease don't fail to contact him via his email; nativehealthclinic@gmail.com or WhatsApp/Call: +2348140073965 thanks once again to dr Emmanuel GOD bless you abundantly
Having Brain tumor and surviving with cancer are the tough things and it is horrible if children are suffering with the disease. Right kind of treatment may help to fight with the disease.
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SYPHILIS.
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