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

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    over there

    Jennifer,

    It sounds like Germany treatment had all the right stuff as you sound pretty H&N normal or better.  Your next few weeks cooking should be fine and if anything bugs you let your doctor know.

    Keep getting better.

    Matt

  • jackflash22
    jackflash22 Member Posts: 524 Member
    Congrats

    congrats on finishing your rads. Great feeling to get them behind you. You sound very positive. Your doing all the right things. Make sure you drink loads of fluids it's so easy at this stage to get dehydrated. I found manuka honey rinses stopped me getting mouth sores. It's been used through the ages evens the Romans used it on sores and wounds. I'm opposite to you in tastes I love sweet things but not keen on savoury. My taste has come back but so different from before rads. Some things I use to love taste horrid now. My saliva has come back about 75%, but I still go dry in the night as my mouth drops open and I breathe through it also if I talk a lot. I've a small spray bottle which used to have artificial saliva but when it finished I filled it with water does the same job. Best of luck

  • wmc
    wmc Member Posts: 1,804
    Welcome to the H&N Group

    Welcome to the group, and sorry you needed to be here. See you have been lurking in the background for four months, LOL. You seem to really be doing very good seeing the rough start you had. You have lost very little weight compaired to most. I never had chemo or radiation, just surgery, but I don't think the side effects should get any worse while you are just cooking. There might be some long term effects that come with radiation over the years.

    Others will chime in that did have radition and have more answers.

    FYI:   The maximum amount of ibuprofen for adults is 800 milligrams per dose or 3200 mg per day (4 maximum doses). Use only the smallest amount of ibuprofen needed to get relief from your pain, swelling, or fever. Going over can damage your kidneys, [ Drugs.com ]

    Bill

     

  • kdot2003
    kdot2003 Member Posts: 143
    OMG Jennifer I am in awe.

    OMG Jennifer I am in awe.  Did you work too?   You are awesome and have done so well!  I was overseas in the USAF for two years and I couldnt imagine ...HUGGGSSSS

    Karen

  • MrsBD
    MrsBD Member Posts: 615 Member
    Welcome

    I'm sorry you had to go through the experience of cancer when doing something so honorable and important for your country. It sounds like you've done really well, but it will most likely be several months before you feel normal again. Hopefully your superiors will recognize that and give you a little longer to recover. Try to eat high protein foods and drink lots of water so your body recovers quickly. You're in my prayers. 

  • JM0377
    JM0377 Member Posts: 18
    kdot2003 said:

    OMG Jennifer I am in awe.

    OMG Jennifer I am in awe.  Did you work too?   You are awesome and have done so well!  I was overseas in the USAF for two years and I couldnt imagine ...HUGGGSSSS

    Karen

    Karen,
     
    Since treatment was

    Karen,

     

    Since treatment was 2.5 hours from my base, they sent me medical TDY for six weeks. It would have taken me a full day to drive there, get treatment and then drive back. I am not sure if I could have worked during treatment. After about an hour, I would have to sleep for a few hours. 

     

    Jennifer

  • Kenny-
    Kenny- Member Posts: 98
    great!

    Wow Jennifer, you did really great. I'm almost done with 3 more rads to go. 

    Did you also had chemo? 

    And, I'm no where even close to being able to eat steak, let alone, anything solid after week 2. From start of week 6 onwards, I was on full liquid blender diet.

    You're so impressive! 

  • JM0377
    JM0377 Member Posts: 18
    Kenny- said:

    great!

    Wow Jennifer, you did really great. I'm almost done with 3 more rads to go. 

    Did you also had chemo? 

    And, I'm no where even close to being able to eat steak, let alone, anything solid after week 2. From start of week 6 onwards, I was on full liquid blender diet.

    You're so impressive! 

    No chemo

    Kenny,

     

    My particular type of cancer doesn't really respond to chemo, so it was radiation only. I think I just have a super stubborn streak in me. hahaha There were times when I would decide to eat and know I might pay for it later. I still have pretty substantial mucositis near my left tonsil. That has been consistent since about week 2. I already have pain from simply swallowing my saliva, so eating solid foods just adds to that. My tongue and throat are swollen, but never so much that I couldn't get solid foods down. I had to cut very small pieces and make sure they were soft and no sharp edges. I like my steak medium-rare; so as long as I cut everything around the red parts, I was able to get it down. I did try to eat some pulled pork that I didn't realize had red pepper flakes in it. That cost me a few days of being able to eat. During my last week, I wasn't really able to eat much of anything. Today, I was able to eat a good portion of chicken with broccoli and rice. 

    My neck REALLY began to itch and sting during my last three sessions. Right now, I'd like to claw the skin off my neck. Aquaphor keeps it moitsurized, but not soothing at all.

    Here's what you get to look foward to in four days.....You will wake up and so relieved you won't have a treatment session! :) 

    I was so happy to wake up in my own bed, this morning (even it was at 0400 and due to pain). I had to stay near the hospital for treatment since it was 2.5 hrs from my house. I haven't napped in two days, so I celebrated my small boost of energy to stay awake a whole day. 

     

  • hlrowe
    hlrowe Member Posts: 80
    Greetings back to Deutschland!

    I was active duty Army back in the late 70s and early 80s stationed in Kaiserslautern. 

    Personally, I would rather be treated by German doctors than active service military. I am sure you were in good hands!

    You won't get any worse pain wise. The dry mouth starts to get better after a few months. First 6 mo after treatment I went through a ton of water bottles per day. I'm 3.5 years out from treatment (35 rads and 6 chemo treatments) and at work for 8 hours I go through one ot two bottles now, excluding the 2 cups of coffee.

    Before you know it your taste buds will be back to fairly normal. You will always have somewhat of a dry mouth but it will be manageable. I seem to have a fair amount of saliva in my mouth now but my throat is a little dry, especially when I wake up in the AM.

    TAKE CARE OF YOUR TEETH! The dry mouth makes plaque build up quickly. I get my teeth cleaned every 3 - 4 months. 

    My facial hair is back to normal but I know longer have to shave my neck. Not much neck hair either.

     

    Best Regards,

     

    Harry

  • rcaulder
    rcaulder Member Posts: 70
    Time

    Being mentally prepared is good. Post treatment symptoms and recovery do take time. I'm 4 months out of treatment and still do have a difficult time with dry mouth. But, you need to give yourself credit. You've been through a very difficult treatment regimen and still seem very positive.  I think the worst is over. Yes the post treatment symptoms are discomforting but will improve with time. The time is differrent with each of us. Great thing is, with the eradication of cancer, you now have been given back time. This is a gift. <><