Diagnosed with Stage 4 Tonsil Cancer Need Advice

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Diagnosed with Stage 4 Tonsil Cancer Need Advice

by Charley15 on Sat Feb 14, 2015 04:06 PM

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Hi I am a 40 year old male and was diagnosed with stage 4 tonsil cancer with lymph node involvement on the left side of my neck.  We found out Christmas Eve. It has been a tough road deciding the best treatment option but decided to go with Chemo/Radiation as opposed to surgery due to the the effects from the surgery.

I tested positive for P16 and was told the outcome from this is higher.  I have 2 rounds of cisplatin and 36 treatments of radiation.  I had a feeding tube put in prior to beginning treatment. 

I am on the 14th treatment and have had 1 round of chemo.  I have shown progress with tumor reduction.  However, I am experienceing extremely dry mouth, severe sore throat.  I am able to eat but have lost all taste and anticipate I will not be able to eat much longer due to the throat pain and swallowing.

Can anyone tell me what has helped them with the throat pain.  I have the magic mouth wash and seems to help a little, pain medicine (oxy) and rinsing with baking soda and warm water.  Any more suggestions? 

I also wanted to know if anyone could tell me how long does the effects from the radiation last after completed treatment. Ex. how long will i use my feeding tube. 

Also, does anyone have any experience with the treatment not completely working and had to have surgery after?

Thank you in advance for your answers.  It  is so helpful to have someone who has been through this to get answers from. I have a wife and three kids and are trying to stay positive and fight this for them.

RE: Diagnosed with Stage 4 Tonsil Cancer Need Advice

by MizJay on Thu Mar 05, 2015 12:51 AM

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My husband had the same thing two years ago: Stage IV oropharyngeal. He was in a fair amount of pain, but he started using a Fentanyl patch that really helped make it more tolerable. He was on the feeding tube from about the midpoint of the radiation until about 6 weeks after it was over. The radiation side effects continue for quite a while after radiation ends... at least a month, maybe two or three. That's because the radiation keeps working in your body even after the treatments are over. 

My husband's treatment was completely successful and he did not need surgery afterward. 

If I were you, I would talk to your treatment team about getting some stronger, round-the-clock treatment relief. Chemoradiation to that part of your body is no walk in the park, and you need powerful medication to make it tolerable. 

Best of luck to you and your family. 

RE: Diagnosed with Stage 4 Tonsil Cancer Need Advice

by shugytx on Thu Mar 05, 2015 01:14 AM

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Keep sipping water and make youself swallow are you will have to go to rehab, to learn to swallow again. Smart get feeding tube. it will keep kidneys cleand out. I am 3 years out jan. I use Stopper Dry Mouth spray now it works good, and chew gum. You will be fine arter its over keep asking we will help you God Bless you   

RE: Diagnosed with Stage 4 Tonsil Cancer Need Advice

by fatdog on Thu Mar 05, 2015 02:05 AM

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2001 I had stage 4 which spread from tongue to right side,,,I had a radical neck dissection and 35 radiation, it sucks your throat will hurt I didn't have a feeding tube than but I was 350 lbs I stopped eating in march and didn't eat again until Oct. But I came down to 210 lbs.  Push the liquid canfood they will supply to keep weight on push. Water every hour to cut down on the thick mucus u will get,,I am aCHristian and I believe in the healing power of Christ, walk in Faith claim your healing and put all other thoughts out of your head...it's rough but take the pain meds, use lydocain to swish in mouth and throat , I will be praying for you....10 years later I developed esophagus cancer spin off from the radiation that cure the first 2012 I had chemo and than went for proton radiation,and I was cure of cancer again,, I am now on a feeding tube ,what's hard I was a chef and run a catering company so no food but I am here w my family...Praise and thanking him all the day long,,,,,,,hang in there God Bless you can touch base w me any time 

RE: Diagnosed with Stage 4 Tonsil Cancer Need Advice

by MizJay on Thu Mar 05, 2015 02:32 AM

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Oops, I meant round the clock PAIN relief, not treatment relief. D'oh. 

RE: Diagnosed with Stage 4 Tonsil Cancer Need Advice

by PopPop on Thu Mar 05, 2015 02:42 AM

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Charley15,

The others above gave you sound advice, I only have a few suggetions to add. First, you should stay hydrated, if you don't, issues start to snowball on you. So, try to take in at least 64 ozs of fluid a day. I used the nutrition cans and had to use 8 a day, so that was 64 ozs. But I was using the PEG tube all the time for some spell, so I had to flush with water also, more fluid.

2nd, anything I took in orally was at room temperature, hots and colds seemed to bother me allot. I wasn't able to eat orally for roughly 6 weeks after my surgery. The canned nutrition was also at room temperature, cold or hot can upset your stomach if put thru the PEG Tube.

As the one person stated above, get the Doctor's to write a script so you can stay ahead of the pain.

You sound like you are doing the right things by rinsing and gargling with the baking soda and salt solution, I would do that as often as every 20-30 minutes if I felt the need.

My Best to You, Your Family and Everyone Here

RE: Diagnosed with Stage 4 Tonsil Cancer Need Advice

by CheyenneMoon on Mon Mar 09, 2015 10:28 PM

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On Feb 14, 2015 4:06 PM Charley15 wrote:

Hi I am a 40 year old male and was diagnosed with stage 4 tonsil cancer with lymph node involvement on the left side of my neck.  We found out Christmas Eve. It has been a tough road deciding the best treatment option but decided to go with Chemo/Radiation as opposed to surgery due to the the effects from the surgery.

I tested positive for P16 and was told the outcome from this is higher.  I have 2 rounds of cisplatin and 36 treatments of radiation.  I had a feeding tube put in prior to beginning treatment. 

I am on the 14th treatment and have had 1 round of chemo.  I have shown progress with tumor reduction.  However, I am experienceing extremely dry mouth, severe sore throat.  I am able to eat but have lost all taste and anticipate I will not be able to eat much longer due to the throat pain and swallowing.

Can anyone tell me what has helped them with the throat pain.  I have the magic mouth wash and seems to help a little, pain medicine (oxy) and rinsing with baking soda and warm water.  Any more suggestions? 

I also wanted to know if anyone could tell me how long does the effects from the radiation last after completed treatment. Ex. how long will i use my feeding tube. 

Also, does anyone have any experience with the treatment not completely working and had to have surgery after?

Thank you in advance for your answers.  It  is so helpful to have someone who has been through this to get answers from. I have a wife and three kids and are trying to stay positive and fight this for them.

Hey Charley15! First and foremost I hope this finds you hanging in there. I am 3 months out from my treatment from throat cancer that went from tonsils to tongue to node on left side. I also had a feeding tube put in before I started treatment. It was a life saver. I had 36 radiation and 6 chemo treatments. Everyone that has replied to you has given you good advice.

To answer one question I had to have surgery after treatment. My node, during treatment, freaked out and grew to about 6 inches wide to 8 inches long. Doctors told me that was kinda rare and that it most likely died from the inside out and had fluid around it. My surgery was on the 11th of February and the node was more than 95% dead and had not spread to surrounding nodes. I am considered in remission. There was nothing left to biopsy on my tongue or tonsil.

I am still dealing with side effects as far as eating is concerned. It is very important that you never quit swallowing. I also looked up on the internet about mouth exercises for people with throat cancer. I exercised my mouth alot. Sorry I don't have the link anymore.

I still have my tube but the "formula" they gave me and we tried many, my body rejects. It did not at first but after a while I was just sick and nauseous all the time. As of 2/13 I made myself eat. The first thing I actually got down was a bowl of egg drop soup from PF Chang. I cried. Before all this happened I was a fruit and salad girl but they are still hard to eat. Nothing ever sounds appealing until I put it in my mouth. My biggest problem is that the things that are appealing are not that healthy. Seafood seems to go down pretty well but I have to sip room temp drinks while eating. I try all kinds of things and sometimes I choke which is scary. I have to swallow down the right side of throat but I can tell that eventually the middle and left side will work.

I never had any pain meds until after all treatments were down. I don't take much of anything anymore. I stayed with the pain meds a bit longer because of the surgery.

I don't know if anyone else has had happen to them what my biggest problem is right now. I have terrible anxiety since surgery and cry at anything. The doctors tell me that is normal and will eventually go away. Probably didn't help that I had to move on top of everything else.

I hope I was of some help. I tend to ramble. Stay positive even though it is difficult most of the time. Plow through it. Get it over with. We are curable.

Wishing you the best. I am here if you need to talk. :-)

RE: Diagnosed with Stage 4 Tonsil Cancer Need Advice

by Atoms on Wed Mar 18, 2015 10:58 PM

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Expect hearing loss from cisplatin treatment; a little less ability to balance. Radiation is toxic beyond belief. Understand that it will be a couple of years before you feel whole again.

I had 8 hours of surgery to remove my epiglottis and all the support structures on the right side of my neck. They removed 32 lymph nodes with 3 invaded by cancer. I'll be on a Gtube for life; amazingly I've adjusted to that pretty well. If you do home food blends it's just like cooking.

I'm three years out from treatment and there has been improvement each year. This year I feel great but I wrestle with the side effects like everyone else.

I was fortunate not to have mucositis so I can't comment on pain control. I had three cisplatin doses and 30 radiation doses. On Grey's Anatomy when Geena Davis puts that mesh mask on for her radiation I want to run from the room. Hated that damn thing.

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