Dad with head and neck cancer

Hi and welcome. Sorry about your father. It must be hard revisiting this all over again for both of you.

We do have some members, one in particular who has had to deal with a recurrence after no primary was found. 

I'm sure he will be along at some time to add his wise words but in the meantime if you click on his name here PFJTHS  it will take you to his profile where he has put down how his journey has been.

My advice re preparation is to make sure your dad is as fit as can be. Some centres recommend that you fatten up a bit as weight loss can be considerable. I'm no too sure about this. I didn't lose much weight at all.

Basically he is being treated by a team who does this every day and its good at it. Do as he's told. Take his pain killers by the clock when they become necessary and be kind to himself all the way through.

RT is pretty powerful stuff. The side effects are awful but most of them are temporary. His radiographers are his point of contact to the rest of his support so do encourage him to tell them how he feels and what he needs every day.

Is he having a feeding tube fitted? I had a nasogastric tube at four weeks because by that time I couldn't swallow even water.

I had RT to both sides of my neck but a smaller dose to one side. I moisturised well every day and put lots of aloe vera gel on straight after treatment to help prevent burning. I just put my head down and got on with it. It's not easy but doable and five plus years later I am alive and well.

Do stay with us. We can help when you need us

Hi S

Dani has really said it all.  Emotionally I was not too disapointed to finally have something we could really treat as I had been expecting this moment, but always hoped it was not going to happen.  I ended up with chemoradiation both sides as they really did not know what was happening with my cancer and wanted to cover all the bases.  That was mainly because it has come and gone over the last 5 years of it's own accord!

I finished treatment in mid February this year.  Got the all clear PET in May and have had subsequent checks and all is OK.

I've bounced back fairly well.  Now dry mouth is my main issue and that affects sleeping and eating.  I can taste most things, but only as a muted taste.  At least I know what I am eating.  Some foods I stear well clear of for the time being - spices and "solid" meats aside from chicken.  Each day I learn better how to live with the mew normal.

As to the new normal...  I walk the dog miles each day and now fatigue is mainly past me have full days.  Currently  on our UK East Coast meander for 5 weeks.  A mix of self catering and eating out.  Enjoying every minute of it.

It will be hard on your Dad.  I describe the treatment as brutal and the initial recovery phase as torture.  & months down the line I look back at it as a distant memory.

Happy to tell you more if you wish.  Just ask.

Daughter234 said:

2. How should we prep for treatment? He is having radiation to his whole neck and I want to be prepared. 

If you send me a private message ( click on my name. You’ll see a + sign at top right. Click on that and it should give you a drop down menu that will include send a private message) 

Rad Chat ( a radiotherapy podcast) have just done a useful one on prehabilitation. I can give you the link. 

Hi Dani - I'm very sorry that I posted and didn't respond for two weeks. Lots going on as you can imagine. 

I'm very grateful for your response and thank you for your sympathies! 

I really appreciate all of this information and I will certainly stay close. Dad I and don't live in the same country, but will have a call with his doctor soon to find out more. They haven't said anything about a feeding tube yet, but I will certainly ask. That is also good intel around moisturizing! 

So glad to hear you are doing well after five years!

x

Hi Peter, 

Thank you so so much for this thoughtful reply and I'm also sorry to you that it's taken so long for me to say anything. 

i'm sorry it's been a long hard road, but so glad to hear that you are well now!

I'm sure I will ask more as he gets into treatment, but this is very helpful. 

He was also trying to avoid radiation if we could, but it's now come to that point and I'm glad that it's treatable. 

So glad that your side effects were temporary and you are doing well. 

Thanks for taking the time!

S

Thanks, Dani! You are so kind. Will send you a private message soon. Appreciate you! x

Hi,

I've just read this and am going through chemoradiotherapy as we speak. 30 sessions and 3 chemo. I did full research and put into place various measures which seem to have worked. I can't say which and may be the total measures all together, but the only side effects I have suffered is I have now lost my taste. It's not nice but only an annoyance rather than horrendous. I've managed to keep my mouth wet all through so therefore had no pain whatsoever, no weight loss as I've been able to eat full solids. Appetite diminished a little so I tend to eat lots of tiny portions through the day. I do get tired but have still lived a normal life, just rest as my body tells me. My neck is now (after 24 sessions) a little red but not sore. I was advised to use sativa gy tex cream, available on Amazon.

Firstly I started a course of acupuncture for xerostomia at the start of my treatment, this has a very good success rate. I also did acupressure myself twice a day, look up the points, it takes a minute and is effective to activate your salivary glands.

I have a spoon of honey before and after radiotherapy, which I swirl round my mouth to coat it and let it drip slowly down my throat. I know honey isn't great for the dental side but to me it's worth the risk. You could also use coconut oil. I also got propolis spray and used that on my throat at night. Salt/bicarb mouthwash/gargles at least 4x daily. Plus the mouthwash advised by the radiotherapy team. If an ulcer appeared I dabbed it with honey and it literally had gone the next day.

I hope this can help you x

Hi TBPM, 

Sorry for not seeing this earlier! My dad just started his treatment last week, so I haven't been checking in too much. 

This is so helpful! Thank you so much. Lots of good tips in here to share. 

My dad was just doing radiation, but during that process they were able to find the primary! Under the tongue. So he started on chemo yesterday too. 

I hope you are well on your way to recovery x 

Oh that's great news they found the primary.

I hope the tips help you. While I sailed through the radiotherapy I then got floored with my final chemo which has been quite brutal, so be prepared for that as I wasn't. So the only tips I can give for that is to keep forcing himself to eat and to maintain his water intake to at least 2 litres a day.

Good luck x

Hi Tpbm so so helpful to read, I’ve been doing lots of research too, have sent you a friend request hope that’s ok as I’d love to ask some more questions. I’ve just started acupuncture before I start the RT.