Terrible throat sores with radiotherapy.

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Hi There,

I've been previously looking at the Esophageal cancer forum, but most people there have the tumor further down towards their stomach.  My husbands tumor was borderline 'head and neck' or' Esophageal' but I can see many more similarities here. 

My husband is finishing his 4 cycles of chemo and radiotherapy tomorrow. However, his neck is red raw and blistered with the radiotherapy. His tumor was stage 3 and had spread to local lymph nodes. No surgery offered as they said it was too near the main aorta so just the chemo/radio combination.  

We see the same people every day at the radiotherapy waiting room, mostly men, sitting in their dressing gowns having radiotherapy on their prostate and chatting and laughing.  My poor hubby is on Morphine, co-codamol, and can only take shakes through a Rig, which luckily was fitted months ago, so not much in common with the others, and to be honest he doesn't feel like chatting (more like...lets get is over with and out of here...!!)

We felt a bit isolated as even other Esophageal patients seem to have no radiation problems, but we were told it was because his tumor is very near the surface in the lower neck, hence the blistering.  

It is such a long and hard journey, as you all know. I'm just hoping that there will be some light at the end of the tunnel for him.  I know everyone is different but there seems to be very few stats on survival rate for this.  They said at the beginning of his 'plan' that the treatment was 'curative'.... but to me that sounds like "we are going to give it out best shot...but who knows" 

My question is.....Does anyone out there have some success stories where they have NOT had an operation, just the chemo/radiotherapy, and has lived long enough to call it a success story? I'd be very grateful for any feedback...good or bad??

Thank you

  • Hi Sopranos, well done to your husband finishing his treatment tomorrow. Ask his team to give him Flamazine for his neck, my neck was in a terrible state, Flamazine cleared it up very quickly. The treatment is brutal for head and neck cancers, the upside is, it does give very high cure rates. Don't worry about him not having surgery, there are many on here who didn't have surgery, and have had good results, and are here to tell the tale. Stick with us, and ask any questions you want, someone will aways answer if they can.

    Ray.

  • Hi I had the same treatment - my neck was a mess too and its cumulative - not surprised he's not very jolly. I was very grumpy as its painful and not eating real food horrible. 

    I used sudacrem on my neck but but I think flamazine is better. 

    I'm 9 months out of treatment and back at work full tone for the last 4 - age 57. I still have a sore throat and problems with a lack of saliva - but I got through it, so plenty of light at the end of the tunnel. But it's a long and unpleasant tunnel! 

    Sending lots of positive vibes to you both. 

    The people on this forum are great - they have lots of knowledge and give generously of their time. Really helped me. 

    I also used the free 6 week counselling (by phone) that Macmillan offers - I found it very good. Not sure if that's for him, but they also do counselling for carers if you'd like it. 

    Rachel 

  • Hi Sopranos

    T2N1M0 HPV16+ Tonsil cancer  age 68

    30 Radio and 4 Chemo finished June 2023

    It is a tough journey...very tough....sitting in he waiting room after week 3 barely able to speak was a downer and things only got tougher....landed in hospital ward for 12 days due to rapid weight loss....on morphine for pain and Laxido for constipation.....PEG tube fed until August....a lot of low points....My wife and Oncology teams pulled me through.

    Mid August things started to improve, slowly at first, started eating small meals supplemented by Ensure 2cal orally....then PEG removed in September eating bigger meals, taste returning....mouth and throat really improved....reducing pain meds ...went to Canaries with my wife....now have a healthy BMI....appetite and taste still improving.....been to Canaries again....enjoying swimming and the odd round of golf

    Things take time...it is a very hard journey for patients and carers but there is light at the end of the tunnel..

    Take care and best of luck

    Peter

  • Thank you. Lets hope after today its onwards and upwards xx

  • Thanks Peter, yes hubby wants a holiday asap he says..something to look forward to I guess. Thanks for your support xx

  • My question is.....Does anyone out there have some success stories where they have NOT had an operation, just the chemo/radiotherapy, and has lived long enough to call it a success story? I'd be very grateful for any feedback...good or bad??

    Hi. I’ll tag one of our other champs who had something similar   

    Hopefully he can help answer

    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 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

    Community Champion badge
  • Hi I’m 6 years out from chemo and 35 radiotherapy sessions  mine was tonsil with 7;affected lymph nodes  one too near spine to operate. 
     I’m living a fabulous life. If consultant says curative that means there’s an excellent chance  of cure .treatments brutal it’s hard there’s no other word for t. My blog below will give you some hope I burnt badly but now as long as u use fact 50:in the sun I’m fine. If yiu read my blog you’ll see I live a great life we’ve just landed in Spain and I’m typing this from there I’ve  a friend who doesn’t post  in here she had oesophageal cancer and chemo radiotherapy n she’s 3 years onward now and life is good. For my burns I was given a polymem bandage no creams it cleared in just over a week 

    hugs 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  

  • sounds wonderful in Spain..First stop hospital,  second stop travel agents I think!! :-)  Thank you for your support xxxx

  • Hi Sopranos

    I found that setting a target for having a break spurred me on....gave me hope....research insurance....I ended up with payingtoomuch.com.

    Other travel insurance companies would not touch me.

    Peter

  • My question is.....Does anyone out there have some success stories where they have NOT had an operation, just the chemo/radiotherapy, and has lived long enough to call it a success story? I'd be very grateful for any feedback...good or bad??

    September 2022 aged 63 diagnosed with HPV associated SCC base of tongue T4 N2 M0. Chemo & radiotherapy for 6 weeks ending Nov 2022.  Dec 2023 one year all clear. See my profile for longer story