adenoid cystic carcinoma

[Tassiedevil]

Hi there Archie, Craig here. Happy to hear from you again, I found that if I stewed the meat ie curry, sweet n sour or any other flavors that you like helped to soften the meat to make it more easily chewed and swallowed and lots of gravy. As you say mashed veg is all well n good but can lack taste so try olive paste or anchovy paste in the potato. Carrot and parsnip mash is another old tried and true side dish. Vegemite and mashed spud are another old one, use plenty of butter to help to swallow it. Noodles are also a great alternative as they are slippery to eat, filling and combined with a good sauce that can be nutritious and tasty. As you already know sweet and sour is the taste profile that seems to be the end result of radiation therapy, it does change gradually, I have noticed different taste profiles coming back. Plenty of water is always helpful when eating and swallowing. You need to hydrate to help thin the saliva. It seems that we become nocturnal after treatments, I think its the nana naps throwing the body clock out of whack plus the after-dinner mints we take after treatment, I had trouble sleeping after being zapped, made me grumpy too.                Catch you later Archie           Craig

[Wombat]

Hello all - only getting nutrition by loading up on paracetamol and ibuprofen pre eating/drinking. Given that there is no taste pay off, and only pain on swallowing, the effort to eat and drink is massive. Note: it doesn't matter what the food or drink is, it's the swallowing. So, all liquids and all foods.  I've gone soft and "slidy" as much as I can. But, so much irritates a wounded throat (it's bleeding now). Thus anything that is vaguely salty or acidic is worse than sweet (even though I can't taste it!). Best thing thus far has been "fresh" soda water.  I aim to drink a 1.25 lite bottle per day.  I can manage the ulcers and the external burns and blisters - it's just the swallowing (even saliva).   Hospital continue to be great.  They've tried heaps of foods/suggestions.  However, I am getting use to the "new normal" - I expect swallowing to be a challenge so anything that is not that, is great (hence eggs are my best friend 🙂 

[Wombat]

Forgot to say - my fatigue has been minimal. So, not all bad.

I'd also be ok with the weight falling away except that I spent 2019 getting to my goal! I haven't been this light since I was 12.......still, I am planning on a few "eating holidays" when my taste returns........won't be counting calories in the second half of 2020! 

[Tassiedevil]

Gday Wombat I am sorry to hear your in pain at the moment keep up with the drugs. Try the eggs raw in a smoothie with plenty of ice to make it cold. The old egg flip with vanilla and nutmeg. It does get better mate but it does take time and we are here to listen when you need to vent or ask a question.           Craig

[PaulaK]

Hi, your original post was so long ago, you probably won't see this.  I too, have adenoid cystic carcinoma but not in the same location as you.  I had a tumour grow in my submandibular salivary gland in my neck.  This was removed with surgery and 7wks of radiotherapy.  Not fun being the one with the rare cancer is it! Especially when a lot of your questions are met with shrugged shoulders because they have never had enough funding to know enough about it.  One Oncologist basically told me they never thought they'd see an ACC case after writing about it in Uni. If you read this, I hope you've recovered well and are blissfully ignorant about all the woes this disease caused you!

<update - have only seen original post since posting this>

[Wombat]

Hi Paula - thanks for posting . Intrigued as to why 7 weeks radiotherapy? I asked my oncologist why 6 weeks for me - she said that was based “on the data”. 

Had my burns dressed today with a sorbolene soak. I had zap 26 of 30. Have burns and/blisters on face, ear and neck. Could have kissed the nurse and the ground she walked on.

[PaulaK]

Hey Wombat - oh you poor thing! The sore skin is just another awful side effect, I found that slapping on sorbolene and white paraffin cream 5+ times a day really helped me keep my skin from breaking and blistering too much.  It was technically 6 weeks and 3 days, 33 sessions.  My oncologist basically just said that was the dose of radiation I required and because of the sensitive nature of the area, 40% of face, right side of neck, back bottom right quarter of head & shoulder, the dose had to spread for a bit longer to minimise damage caused. 

I'm so happy that you are only 4 sessions away from being done! I was so emotional and happy on my final day of treatment!

[archie]

Greetings one and all. Radiation finished last Thursday. 30 sessions. My current problem is a sore throat and mouth. Swallowing food and drink hurts so how do I get around that? Is the use of paracetamol enough? Are there any mouth washes that help with this? I try Difflam lozenges that have an anaesthetic in them, but you can only have so many in a day.
OK over to you learned people, what should I be using?

[Wombat]

Hi Archie,

Good news/bad news.  I finished Friday.  Have had the horrendous throat since week 3. You name it, I've tried it.  Am now on Fentanyl.  BUT, I must qualify that.  I seem to have both a high pain threshold and a similar "ignorance" of pain management.  I used to think that coping with pain was an asset - but not now that I understand that my "system" ignores the pain management solutions too!  So, here is what I have/am trying:

- soluble panadol every 4 hours (I have trouble swallowing everything, and I mean, everything)

 - soluble Advil (it's the kids version) every 4 hours (so, every second hour there is something soluble swallowed, with effort/pain).

- OxyNorm (an Opiod) also in liquid form

- Fentanyl (began this post my last session on Friday - main issue is they need me to eat and drink - that's been a massive challenge for the past 4 weeks). Am down to 56 kilos at 173 cm.

All of the above is under the care of the oncologist. 

Here is what I can eat:

- weetbix that is very soggy

- KFC potato and gravy

- Continental pasta and sauce that is not tomato based

Everything else has created more impact that it's worth.  i.e. there is either acid or some other ingredient that creates issues with ulcers/mouth and then throat (including yoghurt).  Even all of those liquid based drinks that everyone kindly recommends are not tolerable (so, smoothies, sustegen, the high cal pharmacy drinks). But, by all means, if you can cope with them, try these liquid drinks ("Ensure" was what the hospital dietitian wanted me to have - couldn't manage it). 

My number ONE tip = it is far easier to eat in the morning. i.e. the throat deteriorates over the day.  So, spend as much time and effort as possible on eating early and often.

PLUS, don't forget that the 10 days post (I've been told) are worse in terms of side effects. In other words, eat as much as you can as often as you can now.

Since last Friday I have not noticed any worsening of the throat (but this could be the Fentanyl).  BUT, the burns are definitely worse/need more regular dressing.  Counting the days........  

[Lorraine4132]

Hi Archie

Good to be finished, but the radiation still continues to cause problems for the next 2 to 4 weeks.  For my sore mouth, the speech therapist told me to keep the pain meds up.  I took 2 panadol and 1 endone 3 to 4 times a day usually about 30 minutes before eating anything.  If you are lucky enough to get a script for endone, make sure that you take a tablet to stop constipation.  I also had a gel, referred to in the PA hospital, as ‘pink lady’ which was a 50/50 mix of Gastrogel and Mucosoothe.  Then coat the sore areas of my mouth with this gel, which has an anesthetic effect.  This enabled me to eat.  I lived off salmon, potato salad, all the soft custards, rice pudding.  Cups of tea were drunk luke warm.  But surprisingly I could eat pork spare ribs; the soft fatty bits that were soft to chew. 

I still used salt and water to wash my mouth out.  I did battle with oral thrush which stings luck all hell, so the pink lady was such a relief.

Now I’m 2 months post RT and am getting back into eating semi normally.  However my taste buds have changed and green vegetables taste like poison and I can’t eat lettuce.

Cheers