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   ... View more

Hi Steph,   I'm 5 months post radiotherapy for ACC on the Parotid gland. Bear in mind that everyone is different. I have now got a little more saliva but I find some foods so difficult to eat that I now avoid them, even though some were my favourites (steak, french fries, chicken, bacon). I've lost 13 kilos since I began radiotherapy in September 2019 but I was overweight to begin with so it hasn't been a disaster! The inside of my mouth is still dry and a bit sore but I've noticed some days are better than others. I still have to take sips of water with food although pasta with a sauce and cereals with milk are quite easy to eat. I was told by the support nurse that things might improve over time, but also they might not! Sorry I couldn't give you better news. The dry sore mouth is without doubt the most upsetting side effect but we just have to take it a day at a time and keep our fingers crossed that it will gradually improve.  Good luck, Chris ... View more

I finished 6 weeks of radiotherapy after surgery to remove my parotid thanks to ACC. I must admit I did question whether I should have bothered. I had the lump for years before the doctors realised it was malignant but it had never caused any problems or pain. I found the dry sore mouth very distressing in the weeks after treatment had finished and I began to wish I had taken my chances with the cancer! Well 5 months later my mouth is a little better but I still have to sip water with every mouthful of food. Hopefully it will continue to improve but no-one knows for sure. I just try and take it a day at a time now.   ... View more

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.  ... View more

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  ... View more

I found "Calendula Cream" to be very good at stopping the radiotherapy from burning my skin. I would rub it on my skin as soon as I got home from the hospital and wash it off just before the next treatment. Also try a mouthwash called "Caphosol". I found it excellent at reducing soreness in the mouth. It's very expensive but my doctor kindly prescribed it for me. I'm now just over 3 months post treatment after having my parotid removed followed by 30 days of radiotherapy. My ear is still very numb and the dry mouth is a real pain. I have to sip  warm water with almost every mouthful of food. It makes eating very tedious. Also, because I am consuming so much water my sleep is disturbed by trips to the bathroom! I've lost 13 kilos since last August, I'm not too unhappy about that because I was overweight to begin with! One side effect I was very pleased with was the destruction of my beard! It took me about 30 seconds to shave! Ironically the beard is recovering faster than everything else! ... View more

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  ... View more

Hi Archie. I think the truth is that everyone reacts differently to radiotherapy and it's difficult to be specific about side effects. I had radiotherapy to one side of my head and neck for 6 weeks and I wasn't too bad (I'm 66). The skin got a little sore but didn't break. About 2 weeks into the treatment I started to lose my sense of taste, the inside of my mouth got sore and my saliva dried up. Because of this I lost all interest in eating and survived for about 4 weeks on meal replacement drinks. When the treatment finished most of my taste returned but the dry mouth is a real pain. I now have a little saliva but eating is still difficult. I have to take a sip of warm water with nearly every mouthful of food. I've been told the saliva might improve over time but they don't really know for sure. I've lost about 13 kilos, but as I was 13 kilos overweight to start with I'm quite pleased about that! One good side effect --- most of my beard disappeared! Shaving took a minute! Unfortunately that is returning really fast! But as I said, everyone is different and you might have a completely different experience to me. All the best and take care.   Chris ... View more

That's brilliant Lampwork54. I totally understand how you feel with regard to eating. I get very upset and depressed sometimes when I can't eat or finish a meal. I've lost 10kgs since I started treatment and the doctors are slightly worried. I've tried explaining to them what it is like but I don't think they fully understand. How could they? They tell me I MUST try and eat. I tell them that I DO try and eat but it is sometimes such an effort that eventually I just give up. Well it's now been 3 months since I finished radiotherapy. Apparently this is the magical figure for when things start to improve! Good luck to everybody. Stay in touch.   Chris ... View more

Hi Archie, The regular check ups I have just started are not that involved. They just ask me how I am and have a feel of my neck. I will have to go once a month for the first year, and then for the next 4 years the appointments will become less frequent.  Now that the surgery and radiotherapy is over it's "fingers crossed" time as it is with any cancer I guess.   All the best Chris ... View more