First welsh patient enrolled in TORPEdO


This is great news for patients in Wales 

healthandcareresearchwales.org/.../first-welsh-patient-ground-breaking-treatment-throat-cancer

I wonder if they are here on the forum 

  • I am on the TORPEdO trial and I have had the 2 sessions of Chemotherapy and 33 sessions of Proton beam Therapy in Manchester. I am not from Wales though sorry. Lol

  • Hi cycling engineer welcome to our community group.  When did your treatment finish?if you could share your diagnosis and how the treatment went plus where you are in recovery that would be fantastic ti give everyone an indication . Proton bean coild well we the way forward in future years. We e only had one person over a year ago who had p b t at Christie’s. That was  sometimes she still pops in. 
    Hope you’re on the way to recovery Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com Where I give my account of h p v 16+ tonsil cancer Now 3.5 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living

  • Hi Cycling Engineer and welcome from me too. Commiserations on not being WelshWink

    Yes please do share. The proton trial is a small piece of evidence based research. I'm led to believe that there is no doubt that there is significant sparing of surrounding tissue but many patients with early disease make a good recovery anyway. Age is important too as there is no doubt that radiotherapy increases risks of treatment induced cancer later in life.There is the cost of delivery too. Maybe it could be routine in younger patients one day.

    Then there's FLASH round the corner which can be delivered only by the same machines that power protons but treatment is done in one visit.

    Yes, please do let us know about yourself if you feel up to it. Some of us are a nosey lot!

    Dani 

    Base of tongue cancer. Out of radiotherapy January 2019

    Blog about my cancer. 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • Hiiiii.Hazel.. Apologies for not being in touch for a long time. How is everyone?

    Well unfortunately the Torpedo trial didn't save my salivary glands but at least I gave it a go. Recovery is ongoing and it's taken me a while to get my head round the whole thing... Not diagnosis, but the side affects of treatment which have been pretty life changing. I'm still struggling to eat everything and take fluconazole long term (which is.a game changer).  One top tip, you don't always have to have visible white patches to have oral thrush! The docs don't like to give it long term as it can affect the liver,  but as I pointed out it's either that or heart desease because of the amount of double cream I have to eat...and I'd rather risk the liver because I can't drink anymore (due to treatment) and the fluconazole means I can actually eat other food groups instead of slop!! 

    Be your own advocate everyone...the professionals can't know how your feeling and what helps you. Also I introduced my team at Christie's to Xylimelts...its a little tablet that stick to your gum and disolves helping the dry mouth..unfortunately not available on prescription which is a bug bear of mine, but I find it helps if using with biotene gel.Bouquet

    Another big issue for me is I can't breathe through my nose, I'm or out, so my mouths always open especially at night, so if anyone has any tips... I use sterimar nodal sprays...but steroid sprays don't help. I have a nasal steamer too.

    Sending love to everyone going through this journey XXX Heart

  • Hi lisa. Hugs from me were just on way to Scotland I’ll be in touch later. Don’t apologise please fir not being on. Agree re xyimelts I still use them at 4 years darent count up how much we’ve spent.  There’s a site thst doesn’t charge vat. I’ll fry bsck to you later. Hugs hxx

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com Where I give my account of h p v 16+ tonsil cancer Now 3.5 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living

  • Hi Lisa from me too.
    So happy to hear from you

    That all sounds a bit rubbish really. I see you get proton to both sides of the neck which would explain the salivary gland destruction. Proton stops dead at the tumour but there is still a beam in front of it. There must be an answer somewhere. 
    There is a trial somewhere to use gene replacement  therapy for  RT salivary glands. I’ll see if I can find it and report back 

    Can ENT do something about your nose ? 

    Dani 

    Base of tongue cancer. Out of radiotherapy January 2019

    Blog about my cancer. 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • There is a trial somewhere to use gene replacement  therapy for  RT salivary glands. I’ll see if I can find it and report back 

    Lisa, it's here

    https://www.clinicaltrials.gov/ct2/show/NCT02446249

    It might be worth asking your oncologist if there is a UK arm.

    Dani 

    Base of tongue cancer. Out of radiotherapy January 2019

    Blog about my cancer. 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
  • I am just 4 weeks post treatment and I am still in a bit of pain at this stage. I had tonsil cancer that spread to the lymph gland on my left side. I went to Manchester for my treatment and I had the 2 chemotherapy sessions and 33 Proton beam Therapy sessions. I was doing ok for 3 weeks but both chemo sessions made me feel sick for a week. My skin was in good order for about 26 proton beam sessions and then it started to break down. I kept applying the moisturising cream and my skin recovered about 2 1/2 Weeks post-treatment. The facility is amazing in Manchester very Hi-tech and I felt very looked after. I was put up in accommodation at the stay city aparthotel which again was very good and the shuttle bus left from right outside the door each day. 

  • This would be a life changer if it ever came to anything. Not having saliva is the side affect of treatment my husband has found most difficult to deal with 

  • Lot of research going on here. I had RT to both sides of my neck but only a little to one side so one parotid was spared. In that respect I’m lucky and I’ve worked hard to stimulate the surviving minor salivary glands so I’m comfortable. But one parotid and both submandibular glands are trashed. 

    Dani 

    Base of tongue cancer. Out of radiotherapy January 2019

    Blog about my cancer. 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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