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Just browsing and found your thread, as you are at a similar stage to my husband I hope you don't mind me joining in and sharing too. He has tonsil cancer, he found a lump in his neck whilst we were travelling in Europe and we got a diagnosis in France, then came home to get treatment underway. It is on the left with 3 cervical nodules. He is on a clinical trial and starts RT and chemo 22/7. Mask is all sorted (he actually fell asleep whilst they did it!), he has a new tattoo on his chest so they can line him up properly each time, and he has his RIG fitting next Friday.
We're in a good place I think, although we have no fixed address so we are alternating between living in our Campervan and doing housesits!
Our path ahead looks similar to many of yours, maybe e can share stories, successes and frustrations as we go along.
Good luck everyone
Hi and welcome ,
I'm a newbie myself to all this but cannot recommend enough how excellent this site is !!
Everyone is friendly and I have been reassured so much by what people have experienced and passed on which is a big help.
I commend you regards your living arrangements, were between downsizing at moment and in hindsight I wouldn't have started moving if I knew this was coming up behind me, anyhow it is what it is as they like to say on love island .
what is the clinical trial if you don't mind me asking ? I have heard of something over the last couple of weeks when I've been browsing but the name of it escapes me at moment
think I'm down for the rig next week as like your husband I'm starting on the 25th ,just waiting for the call.
anyways good luck with it all !
just joining in too if that’s ok?
my hubby starts chemo radiotherapy on Monday next week, so similar timing, he is also pushing for me to carry on with our house selling moving plans, we were just getting everything ready to do a big relocation move when this all happened. The old life’s what happens while we are making other plans thing I guess!
So here we are mask made, peg goes in next Wednesday, chemo planning tomorrow! First chemo radiotherapy on Monday eek!
its all getting very real now!
Sorry meant to ask what trial your husband is on?
mine clinical trial is called PATHOS
I think they are all about exploring the possibility of de escalating treatment. HPV positive Oropharyngeal SCC is much more radiosensitive so quite a few clinicians are of the opinion that a lot of us are getting “over cooked”
considering radiotherapy has such far reaching and horrid consequences reducing the dose can only be a good thing, provided cure rates are conserved.
the treatment is going to make your hubby sicker than he realises though he will get through it
i would put moves on hold knowing what I know now
Thank you, I’m trying to stall him, not sure what sort of time frame afterwards would be realistic, how long did it take you to start to feel a bit more recovered?
Good to know thank you
They say the radiotherapy continues to work some time after you finish. Two weeks is the oft quoted time. I had severe mucositis from week three till a month after and I spent the first two weeks after RT finished largely asleep and in bed. My husband had to feed me drugs and food via a nasogastric tube ( I didn’t want a PEG)
others get away more lightly
you need to know to not push yourself and go with the flow
your team will annihilate you if you start to lose weight because it’s good nutrition that gets you healing
Hello. Just wanted to say Hi. I'm also on Pathos too. I finished Radiotherapy on 21/6/19 For me effects didn't start until week 5 but they came full on (I expected gradual but no it's full on mucus!) . I'm now 3 weeks after RT and I feel worse than I did with my two surgeries. They initially said you'll start to feel better after two weeks past RT, today they've changed it to 8 weeks. I've a lot of healing to do & I'm exhausted!
I wish you husband a smooth treatment. Its not horid for all!
This is hazel o am 10 month post radiotherapy for right tonsil cancer with affected lymph nodes. I commend your bravery camper van ness house sitting we were in Spain in 9 week trip when Larry as we called big lymph popped up. Came home at the end n wham. My blog www,radioactiveraz.wordpress.com gives details of my experience.
Life does go on has we’ve been out n back several times to HGood luck
It seems your husband is around the same timescale as me
What clinical trial is he on please?
I am on Compare and start on Monday
Hello everyone, and hello from hubby who is sat with me going thru the thread :-) Neither of us can remember the name of the trial but when we're back in the van next week (currently house sitting) I'll check - essentially, it was used on lung patients with positive results, and has 3 arms - standard treatment with extra monitoring (6 weeks of 5 doses of RT with chemo once a week), standard with RT at a stronger dose, and standard with immunology. We know of someone who was on the latter for lungs and they did well. We are on the middle option - you don't get a choice but we couldn't have the third option as hubby also has thyroid issues.
What is an MDT? It's a new term to us!
I think MDT stands for Multi Disciplinary Team, or something like that! It's the team of Consultants, Oncologists, Radiographers, Dieticians etc who decide together on the best treatment.
Best wishes to you and your husband xx
"Life might not be the party we were expecting but while we are here we should dance."
It sounds like the trial I'm on. The immunotherapy was first used on lung cancer patients. The drug is called Durvalumab
Did/does hubby smoke at all
Is his cancer HPV positive? Mine is HPV negative but I could do the trial because I smoked
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