SNTCS - Update

Hi  glad you stuck it out. sadly we have to be pro active. Let us know  how your  op goes please and good luck with the proton bean therapy. 

hugs Hazel 

Thought I would provide a further update, had the most amazing news today.

Further surgery happened in April, neurosurgeons went in and removed all that they could see from around the brain/sinuses. Recovery went very well and I had PBT, proton beam therapy, over the summer with weekly chemo. 7 weeks, 5 per week so 35 sessions total from June to August.

Side effects included skin burn, loss of taste, watery and dry eyes, sore throat, loss of appetite, weight loss and extreme fatigue. Most of these started about 2 weeks in with some continuing til now, nearly 4 months after finishing. Still tired, eyes still sore but taste has mainly returned, thankfully. Lost 14kg, from 86 to 72kg over this period. 

Thanks for such a great update. Spotted your post on F B too. So pleased for you. Xx

Wonderful news.  Delighted for you. Have a lovely Christmas.

Liz

Hi hope you don't mind, I've requested friendship as I'd like to find out if your off label protocol was/is similar to mine, and what diet you're going to try. 

Hi Beepa, I started with the Care Oncology Clinic protocol, then did an Exacta test to find out which chemotherapy and off label drugs would work specifically for me. I’m currently taking 

Atorvastatin 40mg

Metformin 500mg twice daily 

Mebendazole 100mg,alternate with Doxycycline 100mg monthly 

Propranolol 10mg twice daily 

Pantoprazole 40mg

Celecoxib 200mg 

Hydroxychlorine 200mg , twice weekly

CBD oil 4 drops pd 

Naltrexone 4.5ml

I also try to follow a keto diet when possible. 

is this anything like your protocol?

Unknown said:

find out if your off label protocol was/is similar to mine, and what diet you're going to try. 

 Exacta is a test giving a genetic profile of your cancer

I would be interested in what your protocol is too. There is so much going on in this space. (there are many papers on metformin for example) ...I don't know how much in the UK though.

Hi Sparrticus71 

I thought you might be in the USA with this protocol but something tells me you are here in the UK

Who runs Exacta here? 

My protocol is very off label. When I talked about it on Cancer research forum to someone who had been told they were terminal, my messages were removed for rule breaking, so it could be the same here. I'm not in the same boat as Sparrticus71 ie being told that only palliative treatment was available, but I know that the oncologist was not expecting a cure due to bone invasion and now I'm NED. Could be nothing to do with what I took myself, but there are many treatments out there that have been shown in studies to be effective in treating cancer and I think we should have the opportunity to asess them all and decide for ourselves what we want to do, rather than being censored for certain words in a message. 

Unknown said:

rather than being censored for certain words in a message.

I’m checking whether this is ok

I am very interested in this