Long time reader...first time posting...just completed 33 radiation sessions

Hello all!

I've been reading this forum since I was diagnosed with adenoid cystic carcinoma in January. After surgery for what was initially diagnosed as a benign tumor, it ended up being Stage II ACC of my submandibular gland. Since we thought it was benign, I ended up with positive margins and also had perinueral invasion. It was a very long, complicated process between January and September to get doctors to give me answers and advise me on the correct course of treatment. I am active duty military and currently living in Germany. They do not have a radiation oncologist at the military hospital, so I opted to seek treatment in the German system. 

I just completed eight sessions of carbon-ion radiation at the Heidelberg University Hospital and 25 IMRT sessions at the German Cancer Research Center. Thank you all for all of your posts on how to prep for radiation. German medical treatment is definitely different than U.S. treatment. The only recommendations they gave me for anything like mouth sores was sage tea. I managed my pain with Advil. I laughed when the doctor told me 600mg of Advil was a lot. I didn't even tell him I took it twice a day. They gave me this stuff called Novalgin that's banned in most countries, so I only took enough to get me through two days. I was alone during treatment, so I needed to make sure nothing happened to me in my sleep. They were very nice to me; it's just a different bedside manner. 

I think L-Glutamine was a huge success for my mouth sores. I drank a glass of water with L-Glutamine before every session. I didn't drink it my last couple sessions because I would throw up first thing in the morning. In week three and four, I did get about eight mouth sores. The doctor told me that once I got them, they would not be able to heal themselves and only get worse. Mine went away after about 5-6 days. I had some numbing mouthwash. I don't think it was the same Magic Mouthwash everyone talks about. I just know it had lidocaine, but some people have mentioned Milk of Magnesia in theirs mix. Mine did not have that combination. 

I used Aquaphor on my neck daily from the beginning of treatment. My neck got increasingly red each week, but it did not start to itch or sting until my last three sessions. 

I have lost some of my hair along my neck hairline. That region was being hit with radiation beams, so it's pretty common. When they briefed me in the beginning, they mostly talked about men losing their beards during neck radiation. It made sense to me. I was so worried about managing mouth sores that I didn't even think of losing my hair. It was a bit of a shock when I noticed it at the end of Week 5. I was told it will probably continue to fall out for up to four weeks.

I lost about 7 pounds during treatment. I started around 109lbs and weighed in at 102 today. I really didn't want a feeding tube, so there were times I took a shot of some numbing mouthwash and forced myself to eat normal food in the 10 minutes it would numb my mouth. I didn't eat much during the week (maybe once a day), but I would eat a steak on Sunday. There were times it was a painful and slow process, but I needed the protein. My tastebuds are altered. I can't really taste salt. Sweet things do not really taste good. Everything else just tastes "off". Seasonings and spices are much more intense.

The dry mouth is pretty horrible. I use some of the Biotene products, but they don't do much for me. My tongue/throat are swollen so my gag reflex is super sensitive. I think this is why I throw up at least twice a day. I don't feel nauseous and it usually happens when I brush my teeth.

I'm a little nervous about these following weeks as I still "cook". I am trying to remain optimistic that my side effects will stay the same or decrease as opposed to get worse. However, I am mentally prepared for what could happen. Thank you all so much for your posts. While I did not post my story before or during treatment...the information, inspiration and motivation from your posts were a huge help to me.

Sincerely,

Jennifer