SCC tonsil

bebo12249
bebo12249 Member Posts: 181 Member
edited August 2015 in Head and Neck Cancer #1

I was just diagnosed with SCC (HPV+) of the tonsil including 3 lymph nodes. I had the tonsil (clear margins) and nodes removed surgically, have met with a radiation onc and will meet with a medical onc next week. Though my surgeon thinks that rads only will be needed after surgery, the onc docs will I'm sure advise for both rads and chemo. That said, does anyone make it to the end of concurrent rads/chemo without a feeding tube? For the first week after tonsillectomy, I could hardly get water down my throat, much less solid food, and I hear that the worst is yet to come. Any comments appreciated. Thanks.

 

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Comments

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

    Welcome to the group and also sorry you need to be here. I only had surgery of the larynx and neck dissection on both sides, all 86 lymph glands were clean, and I was told radiation was not necessary in my case but I could have it if I wanted. I took my surgens advice and did not have radiation and did very well. Coming up on two years and have been clear since I got out of surgery.

    Yes there has been members that went without a PEG. Some can and others have to have it. We all are different on how our body's responds. The other members can explain PEG and radiation and chemo as I never had them. My knowledge is from those who had it and little from resurch. You will learn more correct information here so don't do Dr Google. At the top of the forum you will see the first is Supperthread. You will get a lot of answers to your questions you have not even thought of yet..

    Bill

  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    Welcome BeBo..

    I was STGII Tonsils and a lymphnode, HPV+, DX in Jan2009..

    Sixteen weeks of four types of chemo, seven of which concurrent with the 35 days of rads.. I had no PEG, though I did switch to pretty much Ensure, water and crushed percocet starting about the 2nd week of rads, until about 3-4 weeks post rads..., as for taking in calories and fluids.

    It's been over six years, I'm clean and clear with all taste and 95% or so saliva back.., no meds..

    John

  • phrannie51
    phrannie51 Member Posts: 4,716
    There are a number of folks who made it

    through treatment without a tube....I'm sure you'll hear from a couple of them besides John (Skiffin)....I wasn't given the option of going without, and had it placed before I even started treatment.  I was skinny to begin with, tho...so that might be why they didn't give me an option.  I made it all through rads without using it.....however, I was one of those who had more chemo after the rads were over....and that is what got me and my tube aquainted :).

    p

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    WELCOME

    Bebo12249,

    Welcome to the H&N forum, so sorry that you qualify.  I was stage IVa, scc, bot, I lymph node, hpv+ (surgery, radss & Erbitux).

    I had 2 PEGs, but always drank one meal a day, every day. Looking back, I most likely could’ve made it without the PEG.  I also drink around 10 glasses of water a day, every day. That was the easiest and the best information I acquired from this form.

    Some people have a very hard time and are dependent on the PEG.  No matter which direction you go you have to get plenty of nourishment and calories.

    The best of luck to you.

    Matt

  • mmt366
    mmt366 Member Posts: 41
    peg

    Hi Bob, I recently completed the exact treatment you described including the radiation. i made it to week 6 or the 30th rad dose before I cried uncle, truth is i should have had the peg from the begining as I had dropped 50 lbs by that time. it was an inconvenience for sure, but you get used to it and it dramatically changed my outlook in a good way. It's been almost 2 months  since it was removed and I've gained back 20lbs already. I can eat most things,albeit slowley and with lots of liquids, but Im tasting food again and can finally see a light at the end of the tunnel In terms of eating. Now stamina and memory is another story. I tire easily and I've got a serious case of chemo brain that makes it difficult to retain new information and remember old. but considering the original diagnosis and how I felt just a few weeks back..I'll take it. just remember to hydrate and continue to use your throat muscles by swallowing throughout, you will be thankful you did later on.

    It's a process but you will do fine, thinking positive thought for you.

     mmt366

     

      

  • tomb247
    tomb247 Member Posts: 54
     Welcome. I was diagnosed

     Welcome. I was diagnosed January 12th 2015 with SCC (HPV+) Stage III N 0. Base of Tounge and Tonsil. Because of shape, my Oncologist decided on 6 weeks IMRT 7 Fields with no chemo.

    Things prgressed ok with me until about week 4. Eating became difficult and I transitioned to Boost and Boost Plus. My doctor had prescribed me Oxycodone and started me on a Fentanyl patch. The Oxycodone was orginally in pill form but soon went to liquid, (which is difficult to get sometimes and may need to be ordered by Pharmacist). The Fentanyl had to be adjusted to build the baseline control.

    I was told that 75% will go to the tube and there is no real way to figure out who will and who won't. I did go a few days without much nourishment and lost quit a bit of weight over the treatment timeframe but was able to satisfy my doctor enough that he did not place me the tube although he was quite close. 

    Just remember to try and keep swallowing because it will get difficult at times. I am now 5 months out from end of treatment and can eat pretty much whatever. Taste is probably 75% back. Saliva is taking it's time but slowly is coming back. Energy is almost 100%. My wife and I are walking 4 miles 5 days a week and I have started playing tennis again. Good luck.

  • avisemi
    avisemi Member Posts: 172
    Welcome!  Sorry you need to

    Welcome!  Sorry you need to be here. I'm glad the surgery went okay. As you can read from the other posts, some folks can make it without a tube.  My husband could not.  The doctor adviced we get the tube up front while he was doing/feeling well just in case.  My dad, who is an oncology surgeon had suggested he didn't need it.  I'm glad we listened to our medical onc. by the time Dima needed it, I would not have wanted one more thing to schedule and deal with. 

  • bebo12249
    bebo12249 Member Posts: 181 Member
    Thank you everyone for your

    Thank you everyone for your comments. If I may ask another question, during the more difficult times, could you drive yourself to treatment?

  • MrsBD
    MrsBD Member Posts: 615 Member
    No Peg

    Welcome to the group. As you've seen, everyone is different. Other than the lymph node biopsy,  I did not have surgery. My treatment was 33 sessions of IMRT and 8 weekly infusions of Erbitux. I lived on water, Ensure, bone broth, IV fluids, and prayers for a few weeks around the end of treatment. It was rough, and I lost 40 pounds,  but I'm still here and doing really well. Trust your doctor's experience and come back here for advice and support.

    Just saw your new question. I could drive, but not on chemo days. Ask your doctor if you'll be able to drive. With Erbitux,  they give Benadryl, which made me pretty tired.

  • robswife87
    robswife87 Member Posts: 209
    bebo12249 said:

    Thank you everyone for your

    Thank you everyone for your comments. If I may ask another question, during the more difficult times, could you drive yourself to treatment?

    Husband drove himself

    everyday to radiation at 5:30am for 6:30am rads. I don't know how he did it. I went with him and drove on Mondays (chemo day) We would normally be there almost 8 hours for chemo and rads. He was usually pretty tired from the benadryl they would give him pre chemo. 

    He did end up with a PEG tube around week 4. He ahd terrible thrush from all the treatment and they could not get it under control. All told he was on Antifungal meds for over 8 weeks. The doctors were stunned how bad it was. Also used a lot of Lidocaine gel in his mouth. Everything started to get better around 2 and half weeks after treatment ended. It was a slow process. He was out of work for 5 months. 3 months of healing and getting strength back. 

    Just make sure you drink by mouth as much water as you can everyday. Keep swallowing. You can also take water in a PEG to keep up your hydration. You can dehydrate quickly during this and then they will want you more days at infusion for fluids. Keep up with the water. 

    There are a few things of his "new normal" he doesn' care for but the sun still shines. He is now 26 months out and clean. Eating is going good, a little slower than before, taste is 90% and saliva about 75%. 

    You will make it through this. You will have many days you want to quit everything, come here these folks will get you through.

    Prayers to you and yours. Fight the fight.

    Sandy

  • bebo12249
    bebo12249 Member Posts: 181 Member

    Husband drove himself

    everyday to radiation at 5:30am for 6:30am rads. I don't know how he did it. I went with him and drove on Mondays (chemo day) We would normally be there almost 8 hours for chemo and rads. He was usually pretty tired from the benadryl they would give him pre chemo. 

    He did end up with a PEG tube around week 4. He ahd terrible thrush from all the treatment and they could not get it under control. All told he was on Antifungal meds for over 8 weeks. The doctors were stunned how bad it was. Also used a lot of Lidocaine gel in his mouth. Everything started to get better around 2 and half weeks after treatment ended. It was a slow process. He was out of work for 5 months. 3 months of healing and getting strength back. 

    Just make sure you drink by mouth as much water as you can everyday. Keep swallowing. You can also take water in a PEG to keep up your hydration. You can dehydrate quickly during this and then they will want you more days at infusion for fluids. Keep up with the water. 

    There are a few things of his "new normal" he doesn' care for but the sun still shines. He is now 26 months out and clean. Eating is going good, a little slower than before, taste is 90% and saliva about 75%. 

    You will make it through this. You will have many days you want to quit everything, come here these folks will get you through.

    Prayers to you and yours. Fight the fight.

    Sandy

    Thanks

    Thanks for sharing your comments. bill

  • edreddog
    edreddog Member Posts: 19 Member
    No Tube

    I made it through but man it was tough and nI lost 80 lbs. in the process been done with treat ment 7 weeks now and am doing pretty good mouth sores still,and cough but blessed. I could stand the weight loss and was in good shape so Onc. gave me ok. One thing I've learned on here everybodys different! I just made up my mind to go without and deal with it,not to say there were'nt times I wish I had gotten it but with great support pushing me through I made it! I wish the very best for you in what ever you decide.

     

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    hi and welcome to our

    hi and welcome to our family.  i never had chemo so can't say but wanted to welcome you and say, I'm sorry you need to be here.

    God bless you,

    dj

  • bebo12249
    bebo12249 Member Posts: 181 Member
    edreddog said:

    No Tube

    I made it through but man it was tough and nI lost 80 lbs. in the process been done with treat ment 7 weeks now and am doing pretty good mouth sores still,and cough but blessed. I could stand the weight loss and was in good shape so Onc. gave me ok. One thing I've learned on here everybodys different! I just made up my mind to go without and deal with it,not to say there were'nt times I wish I had gotten it but with great support pushing me through I made it! I wish the very best for you in what ever you decide.

     

    Thanks for your response. I

    Thanks for your response. I have to ask if you don't mind, given the 80 pd weight loss. what percent loss was that?? I weigh only 160 to start with so I'm concerned that I just don't have much weight to give up. thanks for your comments.

  • bebo12249
    bebo12249 Member Posts: 181 Member

    hi and welcome to our

    hi and welcome to our family.  i never had chemo so can't say but wanted to welcome you and say, I'm sorry you need to be here.

    God bless you,

    dj

    Thank you for your comments.

    Thank you for your comments. bill

  • Kapital
    Kapital Member Posts: 52 Member
    Tonsil CA

    Hi bebo. My husband finished treatment in Feb 2015 for stage IV SCC tonsill cancer, hpv16+, T1N2b.   He had radiation - IMRT for 33 days, and 3 rounds of chemo - carboplatin. He did not have a PEG tube. It was not easy, but doable. The last treatment week was rough and the first two weeks after treatment. He had a difficult time getting much down those weeks, but he did. He did go in and get IV fluids several times during this period as he was not able to drink enough to keep well hydrated. He could always swallow, but he said that his throat was very sensitive from the radiation. He could get some very soft, slippery things down. He could tolerate canned peaches in heavy syrup, jello, an over easy egg cooked in butter, smooth yogurt, very soggy cheerios well soaked in milk and plain milk. He never liked Ensure/Boost and he didn't find Magic Mouthwash of much benefit. He also didn't take much in the way of the pain meds as he said they didn't really help. 

    My husband had his tonsills out before treatment as well, when they were looking for the primary source of an enlarged neck lymph node. He says radiation is a different kind of discomfort than the surgery. The chemo wasn't too bad for him. He was premedicated with pills to take before he arrived and for 3 days after. They also gave him IV medication and extra fluids just before chemo to prevent nausea. It seemed to work pretty well.

    In retrospect, he would still go without a PEG tube. He is grateful that he could always swallow some form of food and feels that this has enabled him to recover faster. Although his taste is greatly diminished and his saliva has not recovered he has done amazingly well. He lost a lot of weight, but he looks and feels good. We are so grateful that there is treatment out there that works. Whatever you choose - stay positive!

  • bebo12249
    bebo12249 Member Posts: 181 Member
    Kapital said:

    Tonsil CA

    Hi bebo. My husband finished treatment in Feb 2015 for stage IV SCC tonsill cancer, hpv16+, T1N2b.   He had radiation - IMRT for 33 days, and 3 rounds of chemo - carboplatin. He did not have a PEG tube. It was not easy, but doable. The last treatment week was rough and the first two weeks after treatment. He had a difficult time getting much down those weeks, but he did. He did go in and get IV fluids several times during this period as he was not able to drink enough to keep well hydrated. He could always swallow, but he said that his throat was very sensitive from the radiation. He could get some very soft, slippery things down. He could tolerate canned peaches in heavy syrup, jello, an over easy egg cooked in butter, smooth yogurt, very soggy cheerios well soaked in milk and plain milk. He never liked Ensure/Boost and he didn't find Magic Mouthwash of much benefit. He also didn't take much in the way of the pain meds as he said they didn't really help. 

    My husband had his tonsills out before treatment as well, when they were looking for the primary source of an enlarged neck lymph node. He says radiation is a different kind of discomfort than the surgery. The chemo wasn't too bad for him. He was premedicated with pills to take before he arrived and for 3 days after. They also gave him IV medication and extra fluids just before chemo to prevent nausea. It seemed to work pretty well.

    In retrospect, he would still go without a PEG tube. He is grateful that he could always swallow some form of food and feels that this has enabled him to recover faster. Although his taste is greatly diminished and his saliva has not recovered he has done amazingly well. He lost a lot of weight, but he looks and feels good. We are so grateful that there is treatment out there that works. Whatever you choose - stay positive!

    Thank you for taking time to

    Thank you for taking time to respond.

  • edreddog
    edreddog Member Posts: 19 Member
    bebo12249 said:

    Thanks for your response. I

    Thanks for your response. I have to ask if you don't mind, given the 80 pd weight loss. what percent loss was that?? I weigh only 160 to start with so I'm concerned that I just don't have much weight to give up. thanks for your comments.

    I was

    I was 298 when starting my journey. i am starting to gain a little back now but dont want to gain it all back! I am now at just under 230.

  • donfoo
    donfoo Member Posts: 1,771 Member
    bebo12249 said:

    Thank you everyone for your

    Thank you everyone for your comments. If I may ask another question, during the more difficult times, could you drive yourself to treatment?

    no PEG

    I got by without a PEG during standard 35 rad sessions. Both my MO and RO recommended trying without one as there is general agreement there is fewer chance of swallow issues. Getting one placed if needed later is not a major procedure. There is no getting around that swallowing is very difficult but we all survive. I did go from 175 to 145 but that was all excess anyway; I could afford the loss, some can't.

    I drove myself to rad treatment for nearly all except when a neighbor would drive for company. But I did not take any drugs for anxiety.

    Hope all is going well.

    Don 

  • tommyodavey
    tommyodavey Member Posts: 726 Member
    bebo12249 said:

    Thank you for taking time to

    Thank you for taking time to respond.

    Driving

    Hi Bebo and welcome to the forum!  My cancer and DX was completely different from yours so all I can offer is support.  Like Phrannie said, she was very thin before starting so if you have any extra weight at all you might not need a PEG.  I didn't.  My weight loss was about 26 lbs and I've gained all of it back, unfortunately right on my stomach where I didn't have a pot belly before.

    As long as you aren't on any drugs that affect your driving ability then you should be able to go yourself.  The rads hit you afterwards, like days and weeks afterwards.  The process itself isn't bad at all unless you're easily stressed with anxiety. 

    IMO, you've been through the worst pain of it all with your tonsils being removed.  My pain was a tumor removal from the base of my tongue and my doctor said the tonsil surgery is worse.  My pain was very bad and my doctor was not very good at pain control.  My Onc ended up helping me with that one later on.  Every person is different with the radiation treatments.  My father in law had SCC and took 35 with nothing more than losing his taste buds.  Others get Thrush or mouth sores but it's temporary.  Remember that.

    Good luck with your treatment.  We'll all be glad once you're finished.

    Tom