SNTCS - Update

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Hi Evereyone

Thought i would provide an update, incase anyone else unfortunate enough to be diagnosed with SNTCS (sino nasal terato carcino sarcoma ) is looking for info.

Thought i had a head cold that wouldnt go away. Then they thought it was polyps. Surgery removed them, sent for biopsy July 23.

Diagnosed Sept 23 with cancer, didnt get full diagnosis until Oct. 

Chemo (cisplatin and etoposide) in Nov & Dec, only 2 rounds as it didnt appear to be successful on scans. Was told i would be moved onto palliative care with 12 month expectancy.

Pushed for debulking surgery, hospital messed up organising the op so switched to another hospital and team. 

Debulking/resection of tumour end Feb 24. Managed to get 90% out, just left a nodule next to my brain.

Symptoms dissappeared soon after surgery, scan after 4 weeks showed that there may be clearance to get to the rest of it, they are going in again this week to hopefully remove it all.

Proton beam therapy is planned afterwards, expected to be for 7 weeks, hopefully this will start in May/June.

I decided not to give up when told about palliative care, took other opinions and pushed for surgery. Whilst not out of the woods yet I am hopeful that this can be beat, if only for a few more good years.

If anyone is in a similar position and wants to find out more about my journey to see if it can help them, please contact me.

  • 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 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • 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. 

    Best news of the Year for me today, and one heck of a Christmas present. Bit different from last Xmas when they gave me a terminal diagnosis with just a few months expected.
    Latest MRI scan shows - No evidence of disease!!
    Looks like the fantastic surgeons, proton treatment and drug protocol I am on has worked. So far. Next stage is now to stop any reoccurrence, which I will try to do through diet, exercise and an off label drug protocol. 
    Never give up. Even stage 4 doesn't mean its the end of the road. I am proof of that and hope to be so far a very long time.
    Love to all you fellow warriors. Have a fantastic Christmas. x
  • Thanks for such a great update. Spotted your post on F B too. So pleased for you. Xx

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

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

    Liz

  • FormerMember
    FormerMember in reply to Sparrticus71

    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?

  • 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.

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • Hi  

    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? 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge
  • FormerMember
    FormerMember in reply to Beesuit

    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. 

  • rather than being censored for certain words in a message.

    I’m checking whether this is ok

    I am very interested in this

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I BLOGGED MY TREATMENT 

    Macmillan Support Line -  0808 808 00 00 7 days a week between 8am-8pm

    Community Champion badge