Greetings from a new guy

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TheDane
TheDane Member Posts: 27
edited March 2014 in Head and Neck Cancer #1
Hello all,

I am a 44-year old guy in for a nice S.C. Carcinoma that filled up a couple of lymph nodes in my neck.
A partial neck dissection was first since the PET/CT showed it to be very localized.

As of 10-10-10 I have completed 8 of 35 Rads, and 2 of 6 Erbitux infusions.

I have gained a lot of great and useful information from you all over the past week since discovering this forum - so THANKS!

I seem to be getting all the usual side effects and I'm getting them pretty hard. I just ate what I think was my last bowl of strawberries and raspberries for quite some time - YEEOOOWCH! And the "charming" Erbitux rash has already turned me into something resembling a giant strawberry! (Hide the children!)

Anyway, I am at Cancer Treatment Centers of America and am getting such amazingly good care I can hardly believe it. They put a team of 12 on me! Everything from the Oncologists(2) to nutritionists, naturopathic, speech therapist, chiropractor, massage, acupuncture, and a psychologist. And dig this - they all talk to each other!

RE: PEG-tube
They pretty much insisted on the PEG-tube FIRST, and although the insertion surgery was like getting kicked by a donkey (for me anyway) it is now fine and I really don't even notice it. The mouth sores are already on the verge of making eating very painful so I know I'll be relying on it heavily.

I guess if anyone has any questions for me - fire away!
I'm new to this but very happy to help out anyone else in any way I can.

I suppose I'll post some updates too in order to get some more detailed treatment experiences out there.

~COWABUNGA!

Comments

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #2
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    Welcome Aboard
    Not sure of your exact diagnosis, but welcome aboard, and glad things are working out as planned. Sounds like you are on similar treatment plan as a lot here.

    Best,
    John
  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    #3
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    Baking Soda and Salt Solution
    Hello Dane,

    I'm glad that you found this site as it has a lot of good people here that have been down the road you are now traveling.

    I would like to make a little suggestion to you if it hasn't been mentioned to you yet. I used a solution of 1 Teaspoon of Baking Soda and 1 Teaspoon of Salt mixed into 1 Quart of room temperature water. I would rinse and gargle as often as every 30 minutes to take the edge off of the discomfort of the sores in my mouth and throat. I would spit out most of it and then allow a little bit slide down my throat to coat that as well. The solution semi-numbed my mouth for a bit. Later, I increased the amounts of each to 1 Tablespoon in the Quart of water.

    Others here used a solution called " Magic Mouthwash" I did not use this as the Baking Soda and Salt solution worked well for me. Again, sorry to hear that you are here, but glad that you found your way to this board.

    My Best to You and Everyone Here
  • TheDane
    TheDane Member Posts: 27
    #4
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    Skiffin16 said:

    Welcome Aboard
    Not sure of your exact diagnosis, but welcome aboard, and glad things are working out as planned. Sounds like you are on similar treatment plan as a lot here.

    Best,
    John

    Unknown source Squamous Cell Carcinoma
    Unknown source Squamous Cell Carcinoma overtaking lymph nodes...

    Boy that's a mouthful.

    Mine was "most likely" caused by exposure to HPV about 20-years ago.
    My Rad-Onc says they are seeing a HUGE ramping-up in the number of these kinds of cases.

    "Greaaaaat...."
  • Hondo
    Hondo Member Posts: 6,636 Member
    #5
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    MarineE5 said:

    Baking Soda and Salt Solution
    Hello Dane,

    I'm glad that you found this site as it has a lot of good people here that have been down the road you are now traveling.

    I would like to make a little suggestion to you if it hasn't been mentioned to you yet. I used a solution of 1 Teaspoon of Baking Soda and 1 Teaspoon of Salt mixed into 1 Quart of room temperature water. I would rinse and gargle as often as every 30 minutes to take the edge off of the discomfort of the sores in my mouth and throat. I would spit out most of it and then allow a little bit slide down my throat to coat that as well. The solution semi-numbed my mouth for a bit. Later, I increased the amounts of each to 1 Tablespoon in the Quart of water.

    Others here used a solution called " Magic Mouthwash" I did not use this as the Baking Soda and Salt solution worked well for me. Again, sorry to hear that you are here, but glad that you found your way to this board.

    My Best to You and Everyone Here

    Hi Dane
    I agree with Marine, only on the magic mouthwash I had to cut is 50/50 with water for it to work on me.
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    #6
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    Hondo said:

    Hi Dane
    I agree with Marine, only on the magic mouthwash I had to cut is 50/50 with water for it to work on me.

    Hey Dane
    Just wanted to welcome you to our little group.
  • DJG1
    DJG1 Member Posts: 121
    #7
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    Hondo said:

    Hi Dane
    I agree with Marine, only on the magic mouthwash I had to cut is 50/50 with water for it to work on me.

    Hello Dane,
    I am currently
    Hello Dane,
    I am currently on treatment #18 of 33. only 15 left. I had the mouth sores a week or so ago. I used the recommended salt/bakingsoda mix a minimum of 4 times a day. I also took Lysine (Look in the vitamin section). I get fever blister at the drop of a hat and I always take Lysine to fight them. The RO said no problem to take during radiation to fight the mouth sores. I take one every day, but when I had the sores I took about 4 a day. (I took one everytime i would gargle with the salt/BK). The sores were gone within a week, and have not returned. Good Luck to you!
    Deb
  • TheDane
    TheDane Member Posts: 27
    #8
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    Hondo said:

    Hi Dane
    I agree with Marine, only on the magic mouthwash I had to cut is 50/50 with water for it to work on me.

    It's STRONG
    I got some of that Magic Mouthwash from the pharmacist yesterday and it has Lydocaine in it.
    It reeeally numbs me up, but when it wears off in an hour or so it leaves me ON FIRE worse than before.
    I'll try it your way and reserve it for needed occasions I think.

    ~Thanks
  • TheDane
    TheDane Member Posts: 27
    #9
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    Hondo said:

    Hi Dane
    I agree with Marine, only on the magic mouthwash I had to cut is 50/50 with water for it to work on me.

    .Will try
    Thanks Deb!

    I just took 2 grams of Lysine and I'll try 2 more later today.

    I also just tried making my baking soda solution a little stronger to see if that helps.

    I had the Lysine sitting around already - so if it works for me I'm going to send you a whole sheet of Gold Star Stickers!!

    ~Danke, Merci, Gracias, Thanks!
  • TheDane
    TheDane Member Posts: 27
    #10
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    sweetblood22 said:

    Hey Dane
    Just wanted to welcome you to our little group.

    Cheers!
    Thanks for the Welcome!

    ~Dane
  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #11
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    TheDane said:

    It's STRONG
    I got some of that Magic Mouthwash from the pharmacist yesterday and it has Lydocaine in it.
    It reeeally numbs me up, but when it wears off in an hour or so it leaves me ON FIRE worse than before.
    I'll try it your way and reserve it for needed occasions I think.

    ~Thanks

    Welcome, Dane
    Love the picture!

    My husband also had 35 radiation treatments and 3 chemos of Cisplatin with a clean PET scan we found out about yesterday.

    Mouth sores - Jim had only one or two small sores. He did the lidocaine mouth rinse for awhile but really felt the baking soda rinse was the best thing for his problems.

    Hang tough, Dane. It is a rough treatment but you can get through it.

    There are wonderful people on this site who are terrific about sharing information.
  • Pam M
    Pam M Member Posts: 2,196
    #12
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    Hi
    Good to meet you. Glad to see you've got a good attitude and a treatment team you have faith in. Keep us updated on your progress - hope the lysine and rinses help with the mouth sores (I'm finished with tx, but remember the mouth sores).
  • Fire34
    Fire34 Member Posts: 365
    #13
    Options
    TheDane said:

    It's STRONG
    I got some of that Magic Mouthwash from the pharmacist yesterday and it has Lydocaine in it.
    It reeeally numbs me up, but when it wears off in an hour or so it leaves me ON FIRE worse than before.
    I'll try it your way and reserve it for needed occasions I think.

    ~Thanks

    Hey Dane
    Hey Dane
    How is the acne? Mine was terrible. I had a little more exposure than you I had 18 treatments of Erbitux. My rashes were terrible, the right side of my chest had an almost shingles like rash. Just wondering?
    Best Wishes & Prayers on your treatment
    Dave
  • TheDane
    TheDane Member Posts: 27
    #14
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    Fire34 said:

    Hey Dane
    Hey Dane
    How is the acne? Mine was terrible. I had a little more exposure than you I had 18 treatments of Erbitux. My rashes were terrible, the right side of my chest had an almost shingles like rash. Just wondering?
    Best Wishes & Prayers on your treatment
    Dave

    It's terrible
    Dave-
    The acne rash from erbitux had my number!
    It took over my whole nose, my forhead and scalp, my chin, and my neck including the collar area and back. It was painful too!
    I got on the Doxycycline anti-biotic and after 3 days of taking it twice a day the acne has calmed WAY DOWN. During the day I'll put some pure Jojoba oil on it, and pure aloe-vera gel on it at night. I'm looking mostly back to human now.
    Getting another infusion tomorrow - let's see if the new defenses hold, or if the new infusion brings more 'new' rash.
    It really adds humiliation to the hurt... Oh well, I saved what's left of my hearing this way.

    ~Dane
  • TheDane
    TheDane Member Posts: 27
    #15
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    Pam M said:

    Hi
    Good to meet you. Glad to see you've got a good attitude and a treatment team you have faith in. Keep us updated on your progress - hope the lysine and rinses help with the mouth sores (I'm finished with tx, but remember the mouth sores).

    Hi Pam
    Those evil mouth sores are the biggest cause of pain right now.
    The throat muscles hurt, the skin is all raw, but those sores are the devil.
    If I could just get them to fade or heal then the rest would be nearly a breeze!
    Even milk burns these things!
    I think I'm gonna puree a pizza and put it down the PEG tube! HA!

    ~Cheers
    Dane
  • backachedp
    backachedp Member Posts: 132
    #16
    Options
    MarineE5 said:

    Baking Soda and Salt Solution
    Hello Dane,

    I'm glad that you found this site as it has a lot of good people here that have been down the road you are now traveling.

    I would like to make a little suggestion to you if it hasn't been mentioned to you yet. I used a solution of 1 Teaspoon of Baking Soda and 1 Teaspoon of Salt mixed into 1 Quart of room temperature water. I would rinse and gargle as often as every 30 minutes to take the edge off of the discomfort of the sores in my mouth and throat. I would spit out most of it and then allow a little bit slide down my throat to coat that as well. The solution semi-numbed my mouth for a bit. Later, I increased the amounts of each to 1 Tablespoon in the Quart of water.

    Others here used a solution called " Magic Mouthwash" I did not use this as the Baking Soda and Salt solution worked well for me. Again, sorry to hear that you are here, but glad that you found your way to this board.

    My Best to You and Everyone Here

    Baking Soda and Salt
    My Husband Bob also used this combo with good results..he had the Majic Mouth Wash but used it maybe 2 times...he preferrred the baking sods and salt..he still uses it. He also uses the Biotine Mouth Spray for the dry mouth still...he goes nowhere with out his bottle of water...still having problems eating has to have gravy with everything but he can eat with alot of gravy. The Carnation VCH drink has helped so much helping him gain back some weight. Thanks to whoever it was who recommeded it! 560 calories per can!

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