Your experience with side effects from head & neck cancer treatment (radiation / mucositis)

[Alan22]

, swallowing steak can be a challenge...need to keep making sure it is chewed enough. 

Am 9 years post head and neck surgery and radiation, have yearly checkups with my original surgeon at st Vincents clinic sydney. Still have dry mouth, drink while eating. Taste plateued at abot 75% I reckon. Can still taste chocolate though...

[mahootna]

@Alan22 

nice to hear from someone further out than me.  I can eat chocolate by having a cup of coffee or hot chocolate on hand.  Most of my meals are covered in gravy or white sauce, this works for me better than drinking water.  I am missing a chunk of taste buds as the removed a portion of my tongue and repaired it with a flap from my foreare.

One of the most challenging things is going to hospital for day surgery or pre admission clinics.  All they seem to have to offer is sandwiches which are almost impossible to eat.  Today I got icecream and yoghurt and was told I could have taken my own soup in a thermos.

My next project is to contain all patient liason officers public hospitals here in the west and request that changes be made to this process.  There are hundreds of people who for one reason or another are unable to have sandwiches.

I have been discharged from the ENT clinic and now my local GP keeps a very close check on me.

[Jaffa44]

Hi everyone!

This thread has been really interesting and informative so a big thank you to all the contributors!  My partner has recently started treatment following diagnosis of HNSCC, P16 positive.  He initially found a lump left side of neck and ignored it suspecting glands up following an ear infection. After three months he went to the Doc who said we will treat as cancer “until it’s not”.  Three biopsies an MRI and CT scan revealed secondary cancer in the node but unknown primary.  A follow up PET scan revealed the primary cancer in the left tonsil. This was removed by surgery in May.

He has now started treatment, so surprised that every where seems to have slightly different treatment regimes, my partner is being treated at Royal Marsden in London, uk 🇬🇧.

Day 1 was Cisplatin and start of radiotherapy 65gray x 30, with another Cisplatin on day 20. We have been told that neck surgery to remove cancerous lymph node is no longer looked at as an effective treatment in the UK and that interestingly Cisplatin twice during the radiotherapy has been shown to be as effective as weekly, based on clinical trials here.  

Iniitial diagnosis and tonsillectomy was done under private medical insurance but we have now transferred to NHS as the majority of cancer care here is NHS.  

We looked at proton beam therapy, there is only one NHS machine at the moment in Manchester, which wouldn’t have been available to him, so we would have had to self fund as the insurance company said this treatment wasn’t covered.

I have researched so much and having found you all I at least know what to expect.  My partner prefers not to know too much as that’s how he can deal with it.  We are all different I guess.

thanks again I think you are all amazing and an absolute God send to me.

[Stace11]

Hi I’m new on here and before I “signed up” I read some of your posts. I’m Not sure I am using the forum correctl so I hope you get this message!  Your posts have been helpful- for  me, I would much rather know what we have to face than head into the unknown -  I respect that everybody is different.  and I would much rather hear it as it is then sugarcoated .   and so I have been reading lots of information, and that way there will be no unpleasant surprises along the way hopefully. I should add that it is my husband who has recently been diagnosed with stage 11 oropharynx cancer and is currently undergoing chemoradiotherapy.  We are currently halfway - just had second chemo (one more to go) and had his 18th radio session (15 more to go).  He is currently doing very well he had a bad start this week and I thought that was it-  he didn’t eat for two days so I didn’t imagine he would go back to it.     But once they sorted out his medicine pain relief out  He has gone back to eating - in between the protein drinks - Soft mushy foods with lots of gravy.  The mouthfuls are a struggle but he’s managing.  He is extremely focused  and is a naturally headstrong quiet person- So it appears he’s just putting his head down and ploughing through as best you ca so it appears he’s just putting his head down and ploughing through as best he can.  I think the most difficult thing for him is getting through all the whole routine of all his meds, mouthwashes- sprays etc  but he is very dedicated.  He has a whole routine that probably takes about 45 minutes  -  then he is ready for his protein drink or food, then he probably has a rest before it all starts again ! But he sets his alarms and goes through the entire ritual.  I think this is helping him massively . It’s become a little routine.  What is interesting to me is the effect after the treatment .  Everybody is saying to me well he is halfway through and he is doing amazing I can’t believe how well he seems .....  and even I perhaps didn’t realise that even once we get to the end this is by no means the end!! So your blog is extremely helpful in helping me to understand what is to come.....i am off now to indulge in some more or your writings!!  Take care and keep up the fight  💪🏼💪🏼💪🏼 

[Mozz]

Hi Stace, My diagnoses was T-0 N2 M-0 meaning they couldn't find the primary tumor. Two nodes were affected and metastatis 0 meaning it hadn't spread beyond the Nodes in my neck.

First two weeks were a breeze, after that I lost my taste. I was still able to eat soft foods heck even hamburgers. It went down hill afer there. I was given Mucosoothe mouth wash I had to take 15 minutes before eating to numb mouth.

I had 35 radiation treatments and chemo Carboplatin once weekly for 7 weeks.

Week 5 is the killer, that is when I got bad mucositis, mouth ulcers and could no longer eat or drink anything. I had to have an Naso gastric tube inserted to take in Protien drinks and use a syringe to inject water so I didn't dehydrate.

I was given Fentanyl Patches and Endone for the pain.

Week 6 I had bad radiation burns on my neck with skin peeling and red bloody sores, both sides. These are some of things they dont tell you.

It does clear up a few weeks after treatment ends. Your Husband will find from about 6 onwards he will get thick ropey mucas. You are constantly spitting it out and sometimes feel like you are choking on it. This too will stop about 4 weeks after treatment ends.

He will find after that that He has dry mouth, very dry mouth. He will need take water with him everywhere he goes from then on.

My treatment ended in march this year, it took about 3 months for the hair on the back of my head to re grow, My taste still hasn't fully returned but is much better than it was. I still have dry mouth!

Main foods for me now are proien drinks, soups, I cant meat unless spaghetti Bolognaise...Steak, chicken, bread is out, just to dry to eat.

Saliva function may or may not return. If it does it can take up to year or more to return and it wont be like it was before. He might find due to dry mouth He will get a few trush infections. There are meds for that.

He will have a Pet Scan 3 months after end of treatment and another one 3 months from the first. Then one again at 6 months later. After that you have a Pet Scan yearly for 5 years.

I wish you both good luck.

Maurie

[Jaffa44]

Hi Stace

the important thing is everyone is different. My OH like yours was extremely disciplined with meds and mouthwashes. He used the two step R1/R2 skin products, designed for radiotherapy treatment and has had no skin breakdown! He managed to eat and swallow right until the end of the treatment.

he is now two and a half weeks post radiotherapy (which carries on working for at least two weeks afterward)

The hardest thing is the lack of taste and dry mouth which makes eating a chore and he has lost weight.  However all in all the side effects have been manageable.  Hope you find the same.

[Stace11]

Hi mozz

Thanks for  taking the time to reply. I have read a lot about the thick mucus and it sounds particular difficult to deal with. He’s very low today, for the first time probably, it’s a bank holiday Monday (I’m not sure what country you are base i’m not sure what country you are in)  it’s a very hot and comfortable day, and the effects if he chemo have  made him extremely tired.  Tomorrow is another day! And so we continue with this difficult journey! Sending love and good wishes your way 💪🏼💪🏼

[Stace11]

 Hi there!  This definitely is one of the more positive posts So that’s encouraging! Dry mouth - that’s already started and he carries water and A water atomiser spray everywhere with him.... I can see this being an ongoing issue.... still managing soft foods - he has to psyche himself up as he has no appetite and it’s such an enourmous effort, but so far he’s hanging in there. Sending love and good wishes to your family.  How are YOU doing? I’ve been ploughing through and have been pretty strong throughout (our family have been through a LOT  in the last year and I have learnt to somehow plough through) but today he was down and struggling and I felt so sad and helpless seeing him suffer.  Tomorrow is another day ..... xx

[CaptainAustrali]

Has anyone had the experience of lumpy feelings in the neck, well after chemoradiation ?

The oncologist says that after radiation damage, the lymph nodes underperform, and it's basically retained fluid - but the feeling of a lump in the neck is what led me to a cancer diagnosis in the first place.

Has anyone else experienced feelings of lumpiness and swelling in either side of the neck a long time after radiation ?

[Azjoetrucker]

Hi Captain...

   Yup, three months out that lump is still there (though much dimished in size) and hard as a rock.

  It still hurts from time to time depending on my sleeping position.  I am told it's mostly scarring from the RadioZapping.

   Lately I've also noticed a small lump on the oppositte side, but again it seems to be part and parcel with the overall swelling of the neck-quite possibly caused by my nasty habit of working outdoors under the Arizona desert sun.  Of late I have taken to using a sweatband around my neck to protect the area...

   Other than the neck swelling and the inability to make any headway gaining back that 20 pounds lost (as well as that ever present unchancing original lump), all's well.

   I've pretty much given up both my concept of my "Old Self" and wondering what a "New Normal" is supposed to be or when will it arrive.

    How's your guitar pursuits going, by the way? 

  Regards,

   Joe The Retired Trucker