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 Nearly50 sometimes she still pops in.
Hope you’re on the way to recovery Hazel
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 5 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
Hi Cycling Engineer and welcome from me too. Commiserations on not being Welsh
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. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
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.
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 ️
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 HPV 16+ tonsil cancer Now 5 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
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. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
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. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
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. T2N0M0 6 weeks Radiotherapy finished January 2019
I wrote a blog about my cancer. just click on the link below
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