adenoid cystic carcinoma

[chrisuk]

Hi Lorraine.

Try Biotene Toothpaste and mouthwash. I was told by my cancer support nurse not to expect any improvement until 3 to 4 months after radiotherapy.  

Chris 

[chrisuk]

Also, ask your doctor for fluconazole (Diflucan) for the oral thrush. It tastes horrible but will clear it up in no time.

And for the sore mouth try Caphosol mouthwash. 

[Lorraine4132]

Hi Chris

Thank you for that information.  

Cheers

Lorraine

[archie]

I am down to 8 Rad Treatments out of 30. So far rest is main requirement and lots of it mainly in the form of nana naps. I have a. slight sore in the jaw right at the back in the “hinge” and a little saw point in the cheek. My right shoulder gets a slight radiation in the muscle up near the neck and throat and this causes a little pain. Considering what I could have this appears to be very little. I just wonder what the last week and a half has in store for me. Cheers everyone . Archie

[Tassiedevil]

Hey Archie its good to hear from you. Only 8 to go, they should fly by now, I know that it went by quickly for me at that stage. The radiation can start to intensify in the sites around about now, just so you know. I had it towards the end of my therapy treatments, its a trait of radiation. Keep an eye on your wound sites if you have any and moisturize as required. Best of luck Archie.                   Craig 

[Wombat]

I’m on the train now to the hospital - about to get zap 21 of 30. My major issue, BY FAR, is swallowing. And I mean swallowing everything -food, liquid (including) water, even saliva/normal swallowing during conversation. This is due to radiation treatment all around the tumour bed (the parotid gland area). So, ensure you have anything and everything for a dry mouth, sore throat, ulcers, thrush etc. The oncology nurses at RNS (Sydney) have been great with products and support. Of note, pain meds do not relieve the extremely dry, raw throat. Interestingly, chewing gum has helped to manage the general impact but not eating/drinking.

[Lorraine4132]

Hi Archie

Make sure that you tell the RT team about your sores as they will cover these prior to your mask going on.  I had one very small sore at the base of the neck, so I used Lucas Paw Paw ointment which was much better than anything the hospital gave me.  You can buy this from supermarkets, but make sure that you get Lucas, the one in the red tube.  

Don't suffer if you are in pain.  Good medication is your friend.

Everyone is different, so it would seem that you are doing very well.

Cheers

Lorraine

[Tassiedevil]

G'day Wombat, Craig here, happy to hear that you are nearing the end of your radiation treatment, sorry to hear that you are in a lot of pain because of it. Really not that much helps at this stage but I am glad that the chewy does, I can't chew gum as I lost part of my tongue so a product called gelclair helped me to maintain moisture in my mouth. The only setback is you are not supposed to swallow it although there are alternate fake saliva products that you can and they are for the throats lubrication after radiotherapy. Ask your nursing staff/radiologist/oncologist or doctor about them I'm sure that they can help you. My tumor was at the sublingual and submandibular glands, but my scar runs from behind the right ear to my chin center line then across to my left carotid, known as the bowtie, so I also have no feeling in my right ear below its center, it's a weird feeling I can tell you. I was told by my ENT surgeon, after the operation, by the way, that nerve damage can happen when they operate in these areas and that I may never regain feeling again. And as I have a stomach PEG it was not a problem for me to  '' eat or drink '' but a sore throat is still a pain in the neck if you'll forgive the pun. My thoughts are with you and I wish you a speedy recovery and a comfortable journey home.

Craig

[Lorraine4132]

Hi Steph

I am so sorry that you are having trouble swallowing.  How do you get your nutrition and hydration?  

[archie]

Good morning. weekends off from treatment. Only 4 to go now. At this stage just a bit of a sore throat that Difflam fixes. Difflam plus sore throat lozenges with honey and lemon flavour works well. every 2-3 hours as required. The daily treatment is fairly quick lately which is good. I still get tired easily and find myself nodding off in the afternoon without any trouble. I do miss being allowed to drive hard to accept. I am so used to just getting in the car and going where and when I want. Swallowing is a bit on the hard side at times, so softer foods is the order of the day. Saliva is a bit on the thick side and is noticeable when it takes a bit of effort to get down. The taste of food and drinks is a bit of a shock.
i do like my food but finding something that tastes good is so very variable. A cup of tea is not so good lately so I have gone back to coffee with a little extra sugar fits in well. Mashed veges with chicken pieces has been welcome with gravy to help the chicken go down has been quite acceptable. Good old Chiko Rolls cooked in an Air Fryer are ok too. I have lost about 2 kilo in weight, which is acceptable. Lots of very cold plain tap water to help take the sting out of the throat too. My left shoulder is still a bit of a problem. I am told it is the radiation catching the muscle from around my neck that is the cause, but it should return to normal within the next 3-4 months when the radiation ceases. Well that brings me up to date with my travels. It’s 3 am so time to get some sleep.