adenoid cystic carcinoma

[Tassiedevil]

Hi Archie                                                                                                                                                                                                                                    My treatment was 35 over 7 weeks, the last 2 weeks were the worst part for me as I also had Chemo as an adjunctive treatment plan for 4 weeks. I had to stop the Chemo because it was making my mouth blister inside which became extremely painful. I have a stomach PEG to supplement feeding as I can't have a nasal feeding tube, I don't use it as I can now eat normally, as much as mouth cancer surgery recipients can, but this is my story I hope yours is different to mine in its outcome. I have ACC and metastatic lung cancer that started in my right sublingual saliva gland spreading to my submandibular gland requiring surgery to remove. That was January of last year I'm still upright and breathing. The dry mouth does get better in time, my problem now is to much saliva at times, carry plenty of hankies in your backpack. Don't use too many tissues as they can be like sandpaper after a while and get a good lip balm or chap stick ,and  moisturise the site it  helps trust me. The back pack will be for your radiation gown,blood pressure cuff and any medications you may have to take prior to or after treatments,a good book ,computer ,tablet ,earphones  or anything else that takes your mind somewhere else. I found this helped me during my treatments and above all BE HAPPY. I found that makes this disease tolerable and those around you accepting. So good luck for your next phase in life Archie and hope to hear from you soon. Craig

[chrisuk]

Hi Tassiedevil,

I'm surprised they offered you chemo. I was told there is no effective chemo for ACC. Apparently ACC is so rare they haven't got around to inventing one!

I'm pleased your dry mouth has improved. That makes me more hopeful.

Chris 

[Tassiedevil]

G'day Chris                                                                                                                                                                                                                                   The thought was maybe it would shrink the lung tumours. How often would an oncologist get a chance to see a case like mine in their career, it stands to reason that you would want to try a theory and try to push the knowledge boundary out a bit further, I know I would. So I did. I mean in this game we are playing for keeps and every day above ground is a good one I reckon. I tried the Cisplatin and the Carboplatin 0 for 2. but you have to try.                                                                                                                                                                Craig                                

[Wombat]

Thanks to everyone for your posts.  It is (perhaps inappropriately) comforting to know that I am about to walk the same path as many others here. I start radiotherapy on Monday for 6 weeks.  I acknowledge that everyone's journey is different.  However, the tips and real experiences described herein are invaluable. 

[Lorraine4132]

Hi Archie

I had surgery in Sept 2019 to remove a parotid gland.  It was 2 days after surgery that I was told it was ACC.  Although the surgeon felt there was enough margin, after consultation with an oncology team, they recommended I undertake 6 weeks of radiation therapy. 

I was too busy business wise to do this straight away, plus I wanted to get some very overdue dental work done so I didn't start until December and  have finished 6 weeks of radiation therapy at a Brisbane Hospital on 22 Jan this year.  My radiation was for one side of the face.   My advice is to make sure that you rinse your mouth with mild salty water approx 4 to 6 times a day and use moisturiser on the side of your face, including your ear and neck right down to the collarbone.   You will get tired so make sure you get plenty of rest.  Listen to your team who will help you.  Eating may by hard.  I lived off creamed rice, caramel custard, and creamy desserts.  Salmon and potato salad and soft toast (no crusts), scrambled eggs.  Luckily my taste buds weren't affected.  

I still experience a very sore mouth and continue to rinse my mouth.  I did develop oral thrush which was so painful and took Nilstat but thrush is reoccurring.  I also got some Xylimelts tabs for night time which adhere to the side of your gums and keep your mouth moist.  That helps somewhat.  

The 2 weeks after treatment are the worse.  I made sure that I had plenty of panadol and endone as the pain around my ear and jawline is worse than after surgery and still swollen.  My mouth is still very sore but healing.  

Good luck with your treatment and keep positive as this helps

[Wombat]

Lorraine - thanks for the info - great timing for me (as I start radiotherapy tomorrow in northern Sydney). One question: when you say that the two weeks after treatment are the worst, was this for pain and fatigue or just pain?

[Tassiedevil]

Lorraine and Wombat                                                                                                                                                                                                          Nice to hear from you both as we have a shared problem in ACC and any information that we can pass on to each other may help to ease our passage through this insidious disease. The only thing I can say on the subject of the after effects of the Radiation treatments is to ask for medication for pain and the thrush that follows. I tried Nilstat and it didn't work for me Fluconazole did the trick, you will have to ask your specialist about this and other complications as they arise. As with all of these medications you will need to change them to make sure they continue to be effective, talk to your specialist.                                                                                                                                                                                                                              Craig

[Lorraine4132]

Hi Wombat

Radiation therapy is the gift that keeps on giving.  I was still tired, but that is wearing off now, but I do still have a very sore and stinging mouth which is due to reoccurring oral thrush and mouth sores.  Plus it gets sore under the tongue so that it's hard to push food down and dry mouth.  The pain I have is where the surgery was as well as along the jaw line which is more of an ache than a  throb.  I am becoming more adventurous with food rather than having to rely on the dairy cabinet for all those mouses, tiramisu, caramel custards and rice puddings.  

Good luck with your trip to "Chernobyl".  Everyone's experience is different, but you will get though this.  We are so lucky to be living in Australia 

[Lorraine4132]

Hi TassieDevil

Thank you for your advice.  I have a supply of panadols and endones and use these now when I really feel that I need them.  But I intend to get a script for a stronger Thrush medication next week.  I tend to take my pain meds about 30 minutes before dinner and use a mouth numbing gel referred to as "pink lady" by the PA hospital to get me through.  I never leave home without it.

Cheers

[Tassiedevil]

Hi Lorraine                                                                                                                                                                                                                      On the subject of mouth soreness I found a mouth wash made from Sodium Bicarbonate helped me. You may be able to use this to help clean the mouth after meals, the brand in my case is Pharmacy Select I don't know if it is available where you are. A word of caution it  contains mint. I found it also cleared the mucus from my mouth and took away the sour taste any time the need arose.           Craig