adenoid cystic carcinoma

[Wombat]

Thanks Chris.  Funny - I've only eaten cereal and pasta with a (non-tomato) sauce this past week.  Looks like I've already hit on the "magic" solution!  I was parotid gland too.  Was just hoping for something more "mouth wise" this past week as I was told that things would start to improve 10 days post. I guess the side effects have a teeny bit (throat slightly better) but I have to get over the expectation that food was going to be easier. I need real stories so thanks for letting me know your experience.  My main challenge now is being underweight. Just hoping that the ulcers improve so I can manage more. I just need to be more realistic.

[MM]

I didn’t get ulcers but some foods were a challenge and can still be post treatment 4 months now. Most of my taste had returned although a few things don’t taste as good as they did. I still have a dry mouth particularly at night when I wake and have to sip some water, don’t really notice so much during the day. Dryer foods like toast can be difficult or sometimes even bread is hard to swallow but most other foods are okay. Pasta, rice, yoghurt and softer foods are a good start. Good luck it does get better! 

[Lorraine4132]

Hi Steph

May I suggest that you try to eat some cooked salmon.  It’s such a nice soft fish, easy to get down in small pieces as at seems to melt in your mouth.  Also try to eat some of those custard puddings which should slide down easy.  Crème broulee, tiramisu, chocolate mousse, etc.   Believe it or not, but I also found I could eat small bites of bbq pork spare ribs, particularly the fatty bits that seemed to melt in my mouth and tasted great.  I could also eat Coles & Woolies potato salad. 

I didn’t lose much in the way of  taste, but my taste buds were different so that any food that had ‘store’ marinade, was awful.  I also couldn’t face the thought of eating chicken.  I found that I could eat various types of cream cheese on soft white bread, minus the crust.  Same with toast.

Even though the staff say 10 days, it’s more like 3 to 4 weeks.  My mouth fully cleared up by about by about week 6 but I still wake up with dry mouth and I need to have lots of drinks through the day, and water by my bed at night.  Can drink tea and coffee but not if it’s too hot.

Now that I’m 2 ½ months post treatment I can eat just about everything except lettuce and green vegetables, except for beans.  A roast dinner is heavenly. A steak divine.

It will get better for you. 

Cheers

Lorraine

[archie]

Good afternoon one and all. It was recommended that I try an Oral moisturiser called XyliMelts for the dry mouth, and it worked for me.There are 40 discs in a pack.They stick to your gum on the outside of your Molar or adjoining gum. They gradually melt day and/or night and lubricate your mouth. I have left them in overnight with no problems. According to the packet they are made in Seattle WA. I have been able to buy them here in Oz in a Pharmacy. My sore throat has eased off a fair bit in recent days even allowing me toast and soup.
Can I also offer another word of advice.
please follow any instructions that come with any medication. not doing so can cause problems that you can well do without.
I am continuing down the post radiation trail and looking forward to the anticipated goals...
Best wishes to al.....Archie

[MM]

Hi All,

I hope you are keeping well. Just a quick question for those post radio therapy.  What follow up testing are you having done to keep an eye on the cancer? I had a PET scan 3 months post radio therapy and am scheduled for my 6 month check up but no testing is done, in fact not until 2 years do they do another PET scan. It seems a lot of you have MRI’s so I’m curious as to how often etc. Also would be interested to know for those in Sydney who they are seeing and where. Thanks so much.

[Wombat]

Hi MM. 

I am in Sydney and go to the "Northern Sydney Cancer Centre" at RNS.  The team is quite large.  My "primary" oncologist is Dr Mark Stevens.  However, I you tend to see a range of people at RNS as a part of "Canrefer".  https://www.canrefer.org.au/services/northern-sydney-cancer-centre

I am almost 8 weeks post radiotherapy with the PET scan scheduled for mid June. I too have been told that follow up scans will be every 2 years.  However, I've already questioned that. The response was: "We will assess symptoms and other matters before moving to a one year repeat PET".

So, I guess the advice is, if you re not happy with the current review process, ask for it to be more often.  I know I will be.

Take care.

[MM]

Thanks Wombat, I’m also at RNS under the care of the ENT clinic with Dr Mark Stevens. I was referred by my ENT surgeon who is also on the team. I may see you there one day. Was just curious as many seem to have more regular testing. 

[chrisuk]

Hi MM,

I'm in the UK so maybe the procedures are different here. My Parotid gland was removed last August and I completed the radiotherapy at the end of October. I was told I would have monthly checks for the first 12 months and then fewer checks for another 4 years. The first two checks consisted of a doctor asking how I was and feeling my neck for anything unusual. When the Corona Virus struck my monthly checks were reduced to a phone call, which to be quite honest were a waste of time. I have now been told to have a MRI scan next Friday. If the scan is clear they will reduce the frequency of the check ups to twice a year apparently. But please bear in mind everyone is different. Also some doctors have different ideas about post cancer checks.

Hope that helps.

Good luck.

Chris

[archie]

Try “xylimelts” for dry mouth. they lubricate the mouth over a few hours, even at night while you are asleep. you put them on your gum near a molar ant they stay there and just do there thing. you can buy them online or through a chemist/pharmacy.. two flavours, light mint also no taste..

[archie]

I finished my Radiation  on 19 March and returned home after about 2 days. I got through the Cancer treatment fairly well, no real problems on that part, but I  had a few problems in other areas. These have now mainly been overcome. The Covid virus has put a stop on me going back to the Hospital for check ups due to the distance and being  unable to travel long distance by train. Most of the side effects have passed except for my neck where the surgery was. I am still numb on parts of my cheek and jaw line.  I still get some dry mouth at night but use the tablets I have mentioned in earlier posts, and they work.  I will post some more here soon. Best wishes to all.  archie