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.  ... View more

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. ... View more

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!  ... View more

Hi Archie and Wombat, I am now nearly 4 months post treatment, have had my follow up PET scan (3 months) which showed nothing, not that I was expecting anything but had worked myself into a frenzy prior to it! My new normal is that mostly taste has returned, a few things don't taste perhaps as good as they did and I avoid a few foods that I used to enjoy...although my taste for chocolate has returned! My mouth at times is sore chewing and I can't seem to open my mouth quite as wide (a minor thing). The dry mouth at night is the most noticeable side effect, I wake having to take sips of water particularly in the early morning. It is worse if I am dehydrated. Fortunately I often get up early to go for a bike ride so it doesn't destroy my sleep patterns. I also apparently snore a little..payback time perhaps to my husband but not a great thing! The 2 weeks post treatment were definitely the worse but up from there. Look after yourselves it does improve.  ... View more

Hi Archie, I was told to use the Moo Goo product on my face and already had the Moo Goo shampoo that I use anyway. It's available in chemist and health food shops and is a natural product so can't imagine it would be an issue.   ... View more

Hi again, Chris I ate/drank a lot of dairy if that helps, milkshakes, smoothies, yoghurt all full fat when usually I would go skim milk etc. I was also told to supplement with sustagen which I just added into milk.  I was told to eat soup too but it was hot weather wise so I didn’t. I lost 2-3kg which was pretty good, 10kg is a lot so hope you have turned the corner at 3 months post.  lampworks and others thanks for the advice on treatment it was helpful information. Hope the dentures help lampworks. ... View more

Hi Archie et al, I am 5 weeks post 6 weeks of radio therapy after surgery to remove lump in submanibular gland. The treatment although not pleasant wasn’t as bad as I had anticipated, I lost my taste but it started to return a few weeks post treatment although not fully there it’s not to bad. I did have problems with my mouth, yawning was very painful and chewing particularly on the side being treatment hurt so adjusted diet to a lot of yoghurt, smoothies etc. Also licking around my gums, something we don’t notice we do to clear food could be excruciating so food that didn’t get stuck was preferable. That was probably 3-4 weeks into the treatment and lasted about 2 weeks post treatment. I also got pretty bad burn marks/dry skin but not hot like sunburn but red and sore at about week 3-4 and got progressively worse it looked pretty bad for a week. I was treated at the ENT clinic at RNS in Sydney.  I’m pretty well recovered now, I have to go back end of February for another pet scan then every 3 months for a check up which I believe is more a chat about symptoms and an examination, at 2 years all going well they will do another pet scan. It’s good to hear many others have been living with the condition for years. Fingers crossed they will find a cure before a recurrence or no recurrence would be even better. Anyway I hope this helps others as to what they may expect all subject to where your treatment may be. FYI I’m 57 years. ... View more

Thanks all and apologies for not responding earlier. Have just started radiation, day 3 and will see how I go...fingers and toes crossed. Appreciate all your responses.. ... View more

Thanks ChrisUK good to hear you are going okay and thanks for the heads up on the mask, having it fitted next Thursday I think but have to get through the PET scan and see radiation specialist before then. Hoping the scan is just a baseline and nothing further found. Will keep in touch. ... View more

Hi Lampworks and Silly et al, I have just been diagnosed with ACC and have spent alot of time crying and googling, none of the information seems positive except for 'slow growing'. I have had my submanibular gland removed and lymph nodes in the area. There was no cancer in the nodes and there was a small margin around the tumor. I think that makes it T1. I have been told radiology and a PET scan for baseline information but looking at your notes I see they may also be checking it hasn't ended up on my lungs or elsewhere in my body. Do you know how long it takes to make the mask and get the radiation started. I am to go to a clinic where my case is discussed among many doctors and then someone is allocated to my case. I'm in Northern Sydney if you have any specialists familiar with ACC you would recommend. I am meant to be going on holidays mid December and am hoping that will still happen but the waiting between tests, operation etc. has been long and drawn out...only by weeks not years fortunately. I had the lump close to a year I would think, GP wasn't particularly worried...Life has really thrown me a curve ball, I am a fit 56 year old female and just can't get my head around all of this. Any advice gratefully received. ... View more