Another newbie, hi!

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I'm a 24 year old guy with adenoid cystic carcinoma... just finished 30 radiation treatments to my head & neck about 2 weeks ago. These past 2 weeks were the absolute worrrrrrrrrst of my life! So much pain in my mouth, and my nose gets plugged like 24/7 making sleep nearly impossible... and my right eye seems to be going blind. :(

Just a few questions...

1. Does anyone have pictures of their tongue during/after radiation? Here is mine about a week ago:
http://i45.tinypic.com/1z4v40z.jpg
http://i45.tinypic.com/1z4v40z . jpg (if first link didn't work, remove the 2 spaces in that one..)
Or can you tell me if yours was similar? How long does it take to... get normal looking again? At least enough to be able to eat without pain. I realize the taste could take longer to come back, which is SUPER depressing. :(

2. Inside my nose is absolutely raw... the same as my tongue basically. It scabs up 24/7 and I have to put cream in it every 15 minutes or so... also it gets plugged and I'll have to do the sinus flush thing with salt water. Any idea how long this takes to recover? I just want to sleep again!! Which they say is necessary for recovery but if my nose is blocked it's imposssible.

3. I've lost all my hair on the sides of my head and the back... I guess wherever the radiation hit. (All facial hair is gone as well) Did anyone else experience this and did it grow back? How long did it take?

4. Most of the right side of my face is numb now, did this happen to you? (My tumor was on the right side... surgery apparently was not an option to remove it) They say it was pressing on my optic nerve so now my right eye is also a complete blur. :(

That's enough for now as I continue to read the forums. I have like a million questions and I feel SO alone through all this and I just hate having no idea what's going on with me!! So thank you so much for any feedback you have! :)

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,723 Member
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    young newbie
    Hi Spazactaz,

    Welcome to the party. I am almost 12 weeks post treatment and I do share a few things with you and a few I do not.

    1. No pictures of tongue. It never became to big of a problem. Just normal problems wit swelling, pain and sores.
    2. No terrible nose problems.
    3. Hair gone in a circle going around my head which kind of lines up with my chin. No hair below the imaginary line and none coming back in this area. Moustache, upper cheeks and chin fairly normal hair growth.
    4. Left side below jaw is numb because of lateral juggler dissection to remove 1 lymph node.

    Sorry it has been so rough on you. Hopefully, you are on the mend.

    Matt
  • katenorwood
    katenorwood Member Posts: 1,912
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    ACC
    Hello !
    Welcome seems not the right word to use. I also am a new one on this site, and an ACC survivor myself. Pretty new into it only 6 months. There are a few of us on the site with this type of cancer, and I'm sure they will pop in too ! Mine was in a large saliva gland and I was able to be resected. I am so sorry you are going through all of this pain, others on the site (head and neck) have been through more than me...and will advise you because of more knowlege ! Great site here...but for more specific information on adenoid cystic carcinoma go to ACCOI or their sister site ACCRF. They deal in ONLY our type of cancer, and have updated, accurate information for you. I hope soon your pain and symptoms will ebb and you heal quickly. Keep us posted, warmest regards, Katie
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
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    Hi spaz...
    Sorry you have to be on the forum...but you found a great place to be with great people. :)

    I can answer just a couple of your issues, but not all.

    I had base of tongue stagee III SCC HPV+ with one lymph node involved. I had Erbitux and radiation only....no surgery or other chemo drugs out there.

    I finished my last rad on Jan. 20th 2012 and yes, the next 8 weeks for me were the absolute worst. Mucous choking me, pain like never before ..oh man I was a mess and taking tons of pain meds...so I share that in the hopes it makes you feel better that it will end...and I suspect you will not take as long to heal as I did :)

    As for the hair. Yes, me too :). I do not shave anywhere under my chin, but my hair has started growing back around the back of my neck and upper lip and chin (never lost the upper lip but around the lower lip and chin I did) ..most of that is back now...so yes, your hair will grow back. How about that baby skin around your neck ...if you don't have that now, you probably will ...lol. I tell people I got a skin peel and weight loss plan for just around $250,000K :)

    Others will chime in on your other issues I am sure.. I can tell you one thing and hope it makes you feel better ..you are absolutely not alone. Check in here often ..and please do go to the www.oralcancerfoundation.org and see what they offer. They have some great info on that site...but agian, you will not find a great bunch of folks to help you along the way than this site. I have truly bonded with the folks here.

    Whispered a prayer for you as I finished this up. Prayer does work my friend. :)

    Best,

    Tim
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    Welcome Spaz...
    Welcome to our private and exclusive club....

    Great people here and tons of experience and willingness to share.

    Best,
    ~John
  • BrianKrashpad
    BrianKrashpad Member Posts: 188
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    hair loss, numbness
    I still have numbness on the side shot, a year + later, but frankly mine was already that way from surgery cutting and bruising nerves, predating radiation. My whiskers still won't grow, right along my jaw line on the side zapped. Had a "hole" at the base of my head on the back where the rays exited also, and there it's come back a little.

    Sorry you've got to be here, but welcome. It gets better.

    Be well.
  • meaganb
    meaganb Member Posts: 244 Member
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    Hey!
    I am 27 and was diagnosed with Adenoid Cystic Carcinoma on March 28th 2012. That was the day I had surgery to remove the "benign" tumor. Well it wasn't benign. Thankfully my surgeon was able to get all of the tumor, he also took 47 lymph nodes. All the lymph nodes were clear and hecgot clean margins but the tumor had been growingbright up against a nerve so I just finished 30 radiation treatments yesterday. I didn't look at the picture of your tongue but if it has a white or yellowish tint to it, that is normal. Mine looks like that right now. I also had some hair loss. No facial hair because I'm a woman, but I lost a lot of hair around the base of my neck. My hair is long so it covers the bald spot but it's still noticeably thinner. My RO says it will grow back. So sorry you are going through this. It seems that this particular type of cancer is becoming more prevalent in very young people. The good news is that you have probably gone through the worst of it now. Keep resting up, you will feel better soon.
  • phrannie51
    phrannie51 Member Posts: 4,716
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    Hi Spaz...
    I'm so glad you found this forum!! I have NPC, so tho my tongue is sore, the rads never took a direct hit at it.

    Lots of folks here tho, with BOT who will give you support. Have you tried L-Glutamine to try and get the sores in control? I had good luck with it curing the sores on my lips...and then using MuGard as a preventative once they were going away.

    p
  • nick770
    nick770 Member Posts: 195
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    New
    Welcome to the forums, i have had issues with some hair loss and i don't nearly have to shave as often anymore I'm only about halfway through my treatment
  • Sam999
    Sam999 Member Posts: 319 Member
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    nick770 said:

    New
    Welcome to the forums, i have had issues with some hair loss and i don't nearly have to shave as often anymore I'm only about halfway through my treatment

    Hi Spaz,
    Welcome to the

    Hi Spaz,

    Welcome to the forum. Sorry you have to join this but this is the best place to get support and find ton of info.

    I still have 11 more rads to go so my information may not be as accurate but it seems your tongue has more sores than it should be. As Pharnnie suggested try mugard and L-glutamine. My doc did not appreove l-glutamine but most docs do approve and it seems be working for most folks.

    I am using mugard and caphasol.

    Sam
  • wild willy
    wild willy Member Posts: 63 Member
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    hair loss
    welcome to the site. i lost hair on the back of my head and about 90% of my beard but it all came back .
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
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    hair loss
    welcome to the site. i lost hair on the back of my head and about 90% of my beard but it all came back .

    How Much Do You Have....
    At 72, how much do you have...., LOL.

    Sorry, I'm just feeling ornery today, and I'm sure you can handle a little teasing.... I forgot to mention that I have a bit of an Abi-Normal side to my humor.

    Best,
    John