Yes, am doing ok.   It's tricky some days.  I have ongoing and permanent side effects from intense radiotherapy.  I was diagnosed stage 4 in January and had the f**k zapped out of my neck in Feb/March. There are now no detectable cancer cells so that is extremely good (given where I started). It's just a case of regular check ups now (I hope!).  The main issue with ACC is how it "travels".  I am sure you have read about this!  So, it is about keeping vigilant re symptoms and taking note of anything that is not "right".   The rest is about trying to live as normal as possible! Oh, and trying not to get frustrated at others when they complain about their sore knee/hand (insert minor issue)! 😲 ... View more

That's the trouble with ACC - it's both rare and varied.  I'm parotid.    I can only suggest that you post a query on the FB page and see what happens. i.e. not everyone describes their situation. But, many are happy to respond.   The international group is likely to have others with the same diagnosis:   There are also some (reading) references here: https://rarediseases.info.nih.gov/diseases/5743/adenoid-cystic-carcinoma https://www.rarecancers.org.au/directory/245/adenoid-cystic-carcinoma       ... View more

The Australian group is: "Without a Ribbon Inc".  There is also an international group.  Feel free to ask any questions here or on the FB page.  We've all "been there". Actually, I'll rephrase that: We are all "still there".  This is one of these shitty cancers that lurks around and just pops up or metastasizes whenever it feels like it.      ... View more

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.   ... View more

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. ... View more

Morning all.    So, I'm two weeks post the last "zap". Am finally getting some improvement in the throat (can swallow water now without too much pain). Still on soft foods (weet bix is now by best friend).  Though, still also losing weight.  I have two queries: 1. Did anyone have ulcers that made eating difficult? This is adding to my challenges. The Mucosoothe works for a few minutes.  Bonjella just kills. Anybody found other remedies? 2. When did the dry mouth improve? I have to chew gum constantly for this and think that this "solution" might be impacting the ulcers?        Steph (AKA Wombat) ... View more

Hi Chris - yes, you must be pissed off that ACC keeps "giving". I think that's what makes me the most angry - that what happens next is so unclear/unknown. I have just assumed that my taste and throat will improve from 31 March. I guess I need to stop assuming and take your approach. That way I won't be disappointed. Here's hoping that the next few weeks do show signs of an upside for you. ... View more

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........   ... View more

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. ... View more

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!  ... View more