Squamous Cell Carcinoma experiences?

LoveMyDadSo
LoveMyDadSo Member Posts: 1
edited March 2014 in Head and Neck Cancer #1
My father is just recovering from 7-8 weeks of radiation and chemotherapy for Squamous Cell Carcinoma in his throat (tonsils and throat)... he is about 6-8 weeks out since last treatment.

During this whole process he has lost about 60lbs. He is really struggling right now with managing his ravaged mouth. He has lots of canker-like sores, a weird mucous like, slimy coating on roof of mouth and loss of taste. Also he wakes up with crusted lips and and has some sort of crystals in his mouth when he tries to chew food.

Can anyone share their post-radiation/chemo stories relating to squamous cell carcinoma in the mouth/throat? When can he expect this to improve? Anyone have any experience with Hyperbolic Oxygen Therapy?? If he could just eat again, I think he would improve dramatically. He hasn't eaten real food in about 3 months (only boost drinks and other nutritionally/calorie enhanced drinks).

LOOKING FOR SUPPORT, ENCOURAGEMENT, TIPS that I can share with my dad!

Comments

  • ididityoucanto
    ididityoucanto Member Posts: 2
    #2
    yes i to had the same disease and went through 8 weeks of intense radiation sessions concurrent with 8 chemo sessions. my situation was that i had to have a stomach tube inserted about three weeks into therapy, and despite that i still had problems in the mouth and throat areas. me and morphine became very close friends for about five months. here's something you might want to tell your dad to try. one teaspoon of baking soda, and one teaspoon of salt mixed in a gallon of water. gargle a glass of this three or four times a day, it really helped the discomfort in my mouth, and it kept my teeth nice and white. there is also a lydocane mixture that is clear and kind of syrupy. i'll get the specifics about that and let you know. it took about three months after my therapy that i could start eating by mouth. but i had to take swallowing therapy sessions, and it wasn't till about two months after that that i could eat in a regular manner, and have my taste come back. it wasn't untill about a year after that that my eating returned to fully normal. sounds a little depressing i know, but i'm still here and it's been nearly five years that i've been in re-mission. if i can help in any way feel free to e-mail me. good luck.

    donny
  • TereB
    TereB Member Posts: 286 Member
    #3
    I have a different type of cancer but in the head/neck area too. I had 40 sessions in the hyperbaric chamber prior to oral surgery because radiation had damaged my teeth and the jaw bone. The extra oxigen worked very well for me and I understand it not only works well on bones but also on wounds that are not healing. It was not a bad experience for me. You can read or sleep while in the chamber.
    TereB
  • sabriene
    sabriene Member Posts: 28
    #4
    I am approximately 6 weeks out of rad. & chemo and have the same problem. Just getting to wear I can swollen water. I live with a peg tube, and a product called Nutren. Wouldn't have made it w/out the peg tube. Lost app. 30 lbs. Mucus is horrible from the treatment. My wife fround a product called Oasis at the Wal-Green Pharmacy store which comes in a mouth sray. It has been a blessing for me. Your father may want to give it a try. Just be sure to get him the mouth spray one. It is worth a try. I have just gotten to wear I can talk again. Tell your father as far as I am concern the recovery is worse that the actual treatment. He sure has my sympathy.
    Sincerely, Roger
  • BBlees
    BBlees Member Posts: 1
    #5
    I had sqaumous cancer in my ear 4 years ago and the Drs at Mayo removed my ear canal. I went through 7 weeks of radiation and I also developed canker-like sores in my mouth. Anything I ate or drank hurt, but what I found that worked the best is to rinse my mouth with warm salt water. I also had some type of a numbing solution that only the Mayo pharmacy mixed up. You could maybe call the pharmacy and find out how you could get some of it. It saved me!
  • LisaAB
    LisaAB Member Posts: 7
    #6
    Hi my Dad finished his 7 week treatment (35 rads and 3 chemos) on June 2. Base of tongue and nodes both sides of neck. He's 69. He did pretty good considering. Yes things do get better. We found 2 weeks after treatment things were still pretty rough and yes lots of phlem too.

    He's back to eating and going out now. He lost 50lbs. I think it was by week 3 after treatment that he started testing foods again. Each day each week something more. He still has the feeding tube in (waiting to have it out) he was using it for the odd feeding up till about 2 weeks ago; just for added nutrition and also some foods don't taste too good so it's discouraging to eat at times. Things improve. He couldn't drink water for a long time but now he can. Some foods taste good and some don't. He seems to like milk now. He can now chew gum as of last week and finds it helps with keeping the mouth moist.

    Give your Dad time and don't push him. Tell him it's all normal and part of the treatment. His energy will take a while too. Give it at least a month and then from there you'll see improvments each week/day. Someone else told me that; and boy were they right on ha. But if you are not comfortable with anything let your oncologist know.

    Hope this helps. Feel free to email me if you have any questions. (lab890@msn.com) I was going out of my mind and talking on email with others that have gone thru it really helped/helps.
    Lisa
  • suedee
    suedee Member Posts: 1
    #7
    I'm 2yrs. into squamous cell cancer surgery. I had a tumor growing inside of my cheek. A 2 and a half in. hole was cut out of my cheek. An artery and a vein was taken out of my arm and put into my cheek to fill in the hole. I was cut from the corner of my mouth back to my ear and down to my chest. The skin off of my nect was stretched to cover up the hole on my cheek. What a sight I was. I did 28 radiation treatments (everyday) at the Cleveland Clinic. I had the mucous and scabs on my esophagus. The salt and baking soda rinses helped me. The more the better. I still do them. I too could not taste. Peanut butter was a help.(good protein) and my oncologist gave me a recipe for a high protein shake to make.The radiation took everything out of me. I'm just now starting to feel better and have less fatigue day after day. It does get better, and my thoughts and prayers are with you and your father.Please e-mail me if you would like to talk. God Bless you and yours.
  • like2bike
    like2bike Member Posts: 2
    #8
    I did not have chemo but I had 30 radiation treatments to my mouth and throat so I can relate to some of your Dad's situation. The mucous problem will improve slowly , but it will improve. Canada Dry (only) ginger ale will help break up the mucous and so will a warm solution of salt and water ,if he can handle it. As far as eating I had to eat baby food or any thing soft wiht any seasoning. That was after I lived on Ensure-Plus for 14 months. I too lost 45 lbs but now I am doing great. I didn't gain all the weight back and the Doctors tell me I won't. Try to keep your Dad on a 2000 calorie diet. It will help.

    WillieG
  • saralea
    saralea Member Posts: 1
    #9
    hi--I am a 6 year survivor of tonsil and neck cancer. I had 7 weeks of radiation and it seemed it burned my whole throat. I even had a feeding tube. He will get better. It will take time and a lot of faith--but he will get better. I bought mouth moisturesizers at the pharmacy. My radiation doctor suggested them.I lost my taste for almost a year. I had dry mouth--i still have it but its not so bad now. I carry my water bottle with me. Tell your dad not to give up. He will get beter. Oh-- I prayed a lot and it really helped.Good luck .

    sara lea
  • xteacher
    xteacher Member Posts: 1
    #10
    I am about 6 months out after radiation and chemo for squamous cell carcinoma in my throat on the back of my tongue and in my left lymph node....I was fried! I couldn't swallow my own spit for about 3 months! I used what they called magic mouthwash....it was benedryl, malox, and lidocaine mixture...It was a savior, but I still used the feeding tube and Jevity for about 3 months after treatments. I still after 6 months don't have my taste buds back and not much of an appetite....he will probably have to make himself eat when he gets to where he can....I lived on Jevity(prescription nutrition drink), and Gatorade, because I was constantly dehydrating, for 3 months or more...at one point I had every imaginable mouth sore possible in all parts of the mouth and throat..all kinds and colors of wierd mucous which was thick and somewhat choking. I use a lot of Biotene mouthwash....I carry a small bottle of it in my pocket always...it is available at Walgreens in the small bottle..big bottles are cheaper at WalMart..Oasis is good also, but burns more than the Biotene...He should rinse often with warm salt water....I still do that...I was told by radiation oncologist that I would probably be as good as I would get in 12 weeks or less, but I am not where I want to be yet and it has been 6 months!!! BUT,...I am on the green side of the grass and improving a lot finally....I can eat most anything if I have enough liquids....I discovered early on that buttermilk was the easiest thing for me to swallow. Water was very hard for me to swallow....My mouth sores lasted way too long....some close to 3 months after treatment.....it was miserable, but it will get better with time! Help him keep his chin up...it is quite depressing...I lost about 35 pounds before I had the feeding tube put in...it was my savior! Eggs are a good first food and the protein in them is good for healing..I ate a lot of bread and milk early on....maltomeal would work for me when other things didn't also...Nothing tastes like it should yet...but I have had to make myself eat....friends, family and prayer are the biggest plus one can have! Best of luck. xteacher is going to bed now...by the way, I slept in my recliner for about 6 months also....I am out and about now though! If you have questions, send them to xteacher and I will check for them!
  • sheryl113
    sheryl113 Member Posts: 2
    #11
    ididityoucanto said:

    yes i to had the same disease and went through 8 weeks of intense radiation sessions concurrent with 8 chemo sessions. my situation was that i had to have a stomach tube inserted about three weeks into therapy, and despite that i still had problems in the mouth and throat areas. me and morphine became very close friends for about five months. here's something you might want to tell your dad to try. one teaspoon of baking soda, and one teaspoon of salt mixed in a gallon of water. gargle a glass of this three or four times a day, it really helped the discomfort in my mouth, and it kept my teeth nice and white. there is also a lydocane mixture that is clear and kind of syrupy. i'll get the specifics about that and let you know. it took about three months after my therapy that i could start eating by mouth. but i had to take swallowing therapy sessions, and it wasn't till about two months after that that i could eat in a regular manner, and have my taste come back. it wasn't untill about a year after that that my eating returned to fully normal. sounds a little depressing i know, but i'm still here and it's been nearly five years that i've been in re-mission. if i can help in any way feel free to e-mail me. good luck.

    donny

    Donny, I am beginning a second round of chemo and radiation for cancer of the larynx. The first round a year ago left me at 119 pounds. They want to insert a feeding tube, but when I ask they explain what they do but not what I will feel. You have a feeding tube any info you can give would be appreciated. I'm the type that needs to know every detail pain etc. Thanks Sheryl
  • Jimmyd711
    Jimmyd711 Member Posts: 2
    #12
    sheryl113 said:

    Donny, I am beginning a second round of chemo and radiation for cancer of the larynx. The first round a year ago left me at 119 pounds. They want to insert a feeding tube, but when I ask they explain what they do but not what I will feel. You have a feeding tube any info you can give would be appreciated. I'm the type that needs to know every detail pain etc. Thanks Sheryl

    Sheryl113,
    I had a feeding tube. I was given much happy medicine when they put the tube in. I didn't have very much trouble getting used to it, it wasn't very painfull. Matter of fact the GI dr. that put it in told me to take tylenol for pain, if needed. The main thing with it is to flush it out daily & when using it for feeding, to go very slow putting very small amounts in at a time. (I learned that one the hard way) To keep it from swinging around, I got some tight fitting mens athletic undershirts to wear. It kept it from swinging around and becoming a nuscience. Now that treatment is over, I'm all healed up and as an added benefit, I now have 2 belly buttons! How cool!
    Hang in there and keep in touch.
    Jimmyd
  • sabriene
    sabriene Member Posts: 28
    #13
    Jimmyd711 said:

    Sheryl113,
    I had a feeding tube. I was given much happy medicine when they put the tube in. I didn't have very much trouble getting used to it, it wasn't very painfull. Matter of fact the GI dr. that put it in told me to take tylenol for pain, if needed. The main thing with it is to flush it out daily & when using it for feeding, to go very slow putting very small amounts in at a time. (I learned that one the hard way) To keep it from swinging around, I got some tight fitting mens athletic undershirts to wear. It kept it from swinging around and becoming a nuscience. Now that treatment is over, I'm all healed up and as an added benefit, I now have 2 belly buttons! How cool!
    Hang in there and keep in touch.
    Jimmyd

    I was wondering how long you had the feeding tube.
    My last rad. treatment was June 23. I am now just getting to the point where I can eat soft food items. How long did you have the tube after rad. treatments?
  • oldejack
    oldejack Member Posts: 28
    #14
    howdy,
    i did 35 rads and 5 chemo myself. and yep the saliva issue is a real pain. took me a long time to adjust and i still forget where my waterbottle is more often than not. been over 4 years for me soooooooo... olde age i guess. it took me a long time to really enjoy the act of eating again, for a long time it was very disappointing. his taste reaction will change some and it will take maybe 6 to 8 months before the metallic taste is completely gone. does he like tea? i found that earl grey tea with honey made a big difference in comfort and the honey is very nutritious as well. as he gets more nutrients his mouth will gwt better. i lost a total of 70 lbs and had no feeding tube, didnt really have the weight to lose either, and when i finally was able to eat again i found every surface inside my mouth was peeling. especially the tongue which was great for grossing out the niece. as time went on the crystals went away too. hope all this helps in some way.
  • emagster
    emagster Member Posts: 1
    #15
    sheryl113 said:

    Donny, I am beginning a second round of chemo and radiation for cancer of the larynx. The first round a year ago left me at 119 pounds. They want to insert a feeding tube, but when I ask they explain what they do but not what I will feel. You have a feeding tube any info you can give would be appreciated. I'm the type that needs to know every detail pain etc. Thanks Sheryl

    Hi,
    I too have been told I have Squamous Cell Cancer at the base of my tongue. I start 11/27 radiation and chemo and next Monday they are putting in a feeding tube. The treatment & recovery sound horrible and I feel helpless. Appreciate reading these "real stories" rather than what my doctors are saying. Blessings to all.
  • deepsea
    deepsea Member Posts: 1
    #16
    emagster said:

    Hi,
    I too have been told I have Squamous Cell Cancer at the base of my tongue. I start 11/27 radiation and chemo and next Monday they are putting in a feeding tube. The treatment & recovery sound horrible and I feel helpless. Appreciate reading these "real stories" rather than what my doctors are saying. Blessings to all.

    Hi, my mother also had SCC on the tongue, stage 3. She underwent surgery, then 29 rounds of radiation and then 4 rounds of brachytherapy. After the 3rd week of radiation she got the feeding tube put in as it was getting difficult for her to consume the required level of nutrition. The feeding tube was a little uncomfortable in the beginning but she got used to it soon enough and was not a problem at all. Just requires daily cleaning and dressing the wound and soon enough it will heal. Her food intake increased immensely thanks to the feeding tube and Infact she started putting on weight soon enough. The feeding tube is a must for head and neck radiation and treatment, I feel. It ensures that you get your required nutrition. Now my mom has finished her treatment 4 weeks ago. She slowly has started oral feeding, soups and puree and juices. We plan to keep the feeding tube for atleast another 2 months...just in case. Just hang in there and accept the feeding tube whole heartedly... it is a life saver !!! God bless.
  • vinny59
    vinny59 Member Posts: 1,036 Member
    #17
    ididityoucanto said:

    yes i to had the same disease and went through 8 weeks of intense radiation sessions concurrent with 8 chemo sessions. my situation was that i had to have a stomach tube inserted about three weeks into therapy, and despite that i still had problems in the mouth and throat areas. me and morphine became very close friends for about five months. here's something you might want to tell your dad to try. one teaspoon of baking soda, and one teaspoon of salt mixed in a gallon of water. gargle a glass of this three or four times a day, it really helped the discomfort in my mouth, and it kept my teeth nice and white. there is also a lydocane mixture that is clear and kind of syrupy. i'll get the specifics about that and let you know. it took about three months after my therapy that i could start eating by mouth. but i had to take swallowing therapy sessions, and it wasn't till about two months after that that i could eat in a regular manner, and have my taste come back. it wasn't untill about a year after that that my eating returned to fully normal. sounds a little depressing i know, but i'm still here and it's been nearly five years that i've been in re-mission. if i can help in any way feel free to e-mail me. good luck.

    donny

    Did they have you stay in the hospital at all during your chemo and radition treatment?
  • Beejoo3
    Beejoo3 Member Posts: 6
    #18
    sabriene said:

    I am approximately 6 weeks out of rad. & chemo and have the same problem. Just getting to wear I can swollen water. I live with a peg tube, and a product called Nutren. Wouldn't have made it w/out the peg tube. Lost app. 30 lbs. Mucus is horrible from the treatment. My wife fround a product called Oasis at the Wal-Green Pharmacy store which comes in a mouth sray. It has been a blessing for me. Your father may want to give it a try. Just be sure to get him the mouth spray one. It is worth a try. I have just gotten to wear I can talk again. Tell your father as far as I am concern the recovery is worse that the actual treatment. He sure has my sympathy.
    Sincerely, Roger

    I hope you are doing better since you posted this in August. I found that Salivart spray is better than Oasis - you might want to try that. The mucus will get better & yes the recovery is very difficult & slow but it does happen!
  • mlowell
    mlowell Member Posts: 3
    #19
    emagster said:

    Hi,
    I too have been told I have Squamous Cell Cancer at the base of my tongue. I start 11/27 radiation and chemo and next Monday they are putting in a feeding tube. The treatment & recovery sound horrible and I feel helpless. Appreciate reading these "real stories" rather than what my doctors are saying. Blessings to all.

    It's not a lot of fun. The first few weeks are ok by the fourth week eating solid food is impossible and it stays that way for the next 6 to 7 weeks (guess it depends on lenght of radiation and type of cancer). I had a lymph node infected as well so little more serious than most. There are going to be a lot of things that happen over the next few months that the doctors won't normally prepare you for. For example I have lymphedema - swelling of the neck from radiation - where the lymph glands are looking for new route to run fluid. All this being said it is four months since finishing my treatment and I am recovering well. It will just take time and don't push it too much. I too have base tongue cancer and had neck dessection. There is a light at the end of the tunnel and we will always look at the future with a little fear of recurrence. But living healthy and good attitute can make a big difference and you just have to know it will be all right.
  • Happymamabear
    Happymamabear Member Posts: 5
    #20
    My husband is three and a half years out from the same thing. He had six weeks radiation and Chemotherpy. the last two weeks he had three treatments a day. He also was raveged but he had a feeding port put in his stomach right after treatment began and ate through that for about six months or better. We had to buy a special formula for him through the cancer ctr. and he lost over fifty pounds all together. he is doing better and eating again but has lost all his saliva glands, is having problems with his teeth, and now is having a lot of trouble with his jaw muscles, his jaw locks and he has trouble opening it. But he is alive and he is healthy otherwise again. He went back to work in six months and Does almost everything he did before. I won't lie it was a long road with the burns and sores but have faith the do get better and they go away after a while. Just make him aware there is no more natural bacteria in the mouth and my husband got thrush which is a yeast infection that causes cancer like sores in his mouth. He takes medication for it when he needs it I am so happy to have him still with us that the problems from the treatments are sometimes hard to deal with but we do your dad will too. Good luck. My son had the same cancer a couple of months before he was24 at the time. He had surgery and lost a quater of his tongue, that is where it was on him. I am a lucky women I have both of my men today... both well and I have a Grandson now and we did not know if that would ever happen. Good luck to you and your family. I will keep you all in my prayers.

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