Base of tongue, tonsil, 4 lymph nodes P16 squamous cell carcinoma

MJG1 · July 2016

Hi all,

We finally got the news that my husband's H&N cancer is P16. We're grateful because it responds better to chemo and radiation. We met with the Radiation Oncologist today and now we're scared of all the awful side effects...ESPECIALLY the possibility of loss of the ability to swallow.

Anyone willing to share personal experiences?

Thanks,

MJG1

Drivingdaisy · July 2016

H&N Stories

Hello,

You may want to stroll through past posts. Many are recent treatment patients. Plus many are "Old-timers", terrific group for stories, information, and support. I am heading into 4 months Post-treatment. I am doing very well and each day it gets better and better. Big tip......Drink lots of water and swallow, swallow, swallow!

MJG1 · July 2016

Drivingdaisy said:
H&N Stories
Hello,

You may want to stroll through past posts. Many are recent treatment patients. Plus many are "Old-timers", terrific group for stories, information, and support. I am heading into 4 months Post-treatment. I am doing very well and each day it gets better and better. Big tip......Drink lots of water and swallow, swallow, swallow!

THANK YOU

What was your original diagnosis and treatment(s). Thanks!

cardoza33 · July 2016

I had same diagnosis. I am 6

I had same diagnosis. I am 6 months post treatment. I swallowed water daily even when I was complely reliant on feeding tube for nutrition. I never lost my swallow. Swallowing certain foods is very difficult even now. Eating takes alot of washing food down with water. It appears to be slowly improving. I would recommend your husband and you read through past posts to get an idea of what to expect. When I got my diagnosis I spent hours reading on this and other websites and talking with people who had gone through this battle to educate myself. In the month between diagnosis and start of treatment I felt like I had a very good idea of what to expect. Then I actually went through it and everyone was correct.....its brutal, but you will get through it. I have had one clean 3 month scan. Had my second scan today and pray it is also clean. Life is getting back to normal. Good luck and post any questions this group is amazing. Tony

CivilMatt · July 2016

cheers

MJG1,

Got the news, hpv+ scc (I guess).

Many of us go through a period where swallowing becomes a challenge, but with a little and persistent variety of meds and good habits, the negative issues are short live. For some people ALL side effects are short lived. As Dd said “drink lots of water and swallow, swallow, swallow.

I first heard of drinking and swallowing from this site before treatment started. I thought how easy is this. It was hands down the best information I received. I consistently drank 10 glasses of water a day along with lots of salt & soda rinse and many bottles of magic mouth wash. I still drink lots of liquids and remember you are flushing the poisons out of your system.

Good luck,

Matt

Kari2007 · July 2016

Same diagnosis

I'm sorry to hear that your husband has had to join this group, but the P16 is great news in terms of outcome and treatment. I just started my 5th week of radiation and chemo (I get three doses of cisplatin - final one on August 9) and will be finishing up treatment on August 15th. I think the side effects really do vary. I lost my taste buds almost immediately, but I've had very little pain, even five weeks in. I've got a lot of mucus, but so far sleeping okay at night and just spitting up a lot during the day. I try to drink lots of water, my daily challenge to myself.

I think it's good to be aware of all the possible effects and prepare, but also know that his experience will vary. One thing I did was really work my speech therapy exercises in the beginning. It's harder to do them now because they trigger pain, but I think keeping those swallow muscles strong for as long as possible is a good thing to do. My oncologist said that even if I'm getting 95% of my nutrition through my feeding tube, I should still swallow 5% orally. I'm only drinking my water and eating about 75% of food through the tube, so I'm doing pretty well.

Good luck!

Kari

MJG1 · July 2016

CivilMatt said:
cheers
MJG1,

Got the news, hpv+ scc (I guess).

Many of us go through a period where swallowing becomes a challenge, but with a little and persistent variety of meds and good habits, the negative issues are short live. For some people ALL side effects are short lived. As Dd said “drink lots of water and swallow, swallow, swallow.

I first heard of drinking and swallowing from this site before treatment started. I thought how easy is this. It was hands down the best information I received. I consistently drank 10 glasses of water a day along with lots of salt & soda rinse and many bottles of magic mouth wash. I still drink lots of liquids and remember you are flushing the poisons out of your system.

Good luck,

Matt

Yes hpv+ssc

The team meets tomorrow to discuss options for treatment. Surgery or not, chemo and radiation regardless. We're not sure which way to go even if they suggest no surgery, we're not sure we shouldn't just go after it surgically regardless, but that is so much more complex.

MJG1 · July 2016

cardoza33 said:
I had same diagnosis. I am 6
I had same diagnosis. I am 6 months post treatment. I swallowed water daily even when I was complely reliant on feeding tube for nutrition. I never lost my swallow. Swallowing certain foods is very difficult even now. Eating takes alot of washing food down with water. It appears to be slowly improving. I would recommend your husband and you read through past posts to get an idea of what to expect. When I got my diagnosis I spent hours reading on this and other websites and talking with people who had gone through this battle to educate myself. In the month between diagnosis and start of treatment I felt like I had a very good idea of what to expect. Then I actually went through it and everyone was correct.....its brutal, but you will get through it. I have had one clean 3 month scan. Had my second scan today and pray it is also clean. Life is getting back to normal. Good luck and post any questions this group is amazing. Tony

Thank you

Cardoza33 what was your treatment? surgery, chemo, radiation? Thank you, MJG1

MJG1 · July 2016

Kari2007 said:
Same diagnosis
I'm sorry to hear that your husband has had to join this group, but the P16 is great news in terms of outcome and treatment. I just started my 5th week of radiation and chemo (I get three doses of cisplatin - final one on August 9) and will be finishing up treatment on August 15th. I think the side effects really do vary. I lost my taste buds almost immediately, but I've had very little pain, even five weeks in. I've got a lot of mucus, but so far sleeping okay at night and just spitting up a lot during the day. I try to drink lots of water, my daily challenge to myself.

I think it's good to be aware of all the possible effects and prepare, but also know that his experience will vary. One thing I did was really work my speech therapy exercises in the beginning. It's harder to do them now because they trigger pain, but I think keeping those swallow muscles strong for as long as possible is a good thing to do. My oncologist said that even if I'm getting 95% of my nutrition through my feeding tube, I should still swallow 5% orally. I'm only drinking my water and eating about 75% of food through the tube, so I'm doing pretty well.

Good luck!

Kari

your treatment

Kari,

What was your treatment plan? Did you also have surgery? It is SO nice to hear these positves from other survivors.

Thank you,

MJG1

MJG1 · July 2016

RottiesMom said:
All of the above!
I was diagnosed with SCC right tonsil is origination site and metastized to 2 lymph nodes on same side! Swallowing is the most important thing. I too lost my taste pretty early on and I am totally on protein shakes now (well I can eat vanilla ice cream and watermelon). I am on gabapetin for pain, anti nausea meds and just got put on liquid pain medication. I have 3 weeks left of radiation (out of 7) and one more chemo (cisplatin) Aug 2 (out of 3). You are in the right place! This forum rocks! Good luck!

Joanne

Your treatment

HI Joanne,

Thanks for responding. What was your treatment plan? Did you have surgery first or at all? Thank you!

MJG1

Kari2007 · July 2016

MJG1 said:
your treatment
Kari,

What was your treatment plan? Did you also have surgery? It is SO nice to hear these positves from other survivors.

Thank you,

MJG1

Treatment plan

No surgery for me. I had a very small tumor at the back of my throat and two involved lymph nodes. The docs agreed on 7 weeks of daily radiation (Monday - Friday) and three high doses of cisplatin spaced three weeks apart. It's a pretty standard protocol. Some people do 7 weeks of lower dosed chemo, but because of my young age and relatively good health, they decided to blast me for all it's worth. Yay, me! I still have one more chemo left and almost three more weeks of radiation. It's a tough road, but the outcomes are so good. Hopefully you and your husband can keep that final goal of cancer free as your light at the end of the tunnel. You've found some good people on here.

Kari

RottiesMom · July 2016

All of the above!

I was diagnosed with SCC right tonsil is origination site and metastized to 2 lymph nodes on same side! Swallowing is the most important thing. I too lost my taste pretty early on and I am totally on protein shakes now (well I can eat vanilla ice cream and watermelon). I am on gabapetin for pain, anti nausea meds and just got put on liquid pain medication. I have 3 weeks left of radiation (out of 7) and one more chemo (cisplatin) Aug 2 (out of 3). You are in the right place! This forum rocks! Good luck!

Joanne

RottiesMom · July 2016

No surgery

MJG - I didn't have surgery. The treatment for this is radiation and chemo. I was told radiation will kill the cancer and the chemo will make sure it doesn't spread anywhere. I did have pet scan before treatment started and the cancer was in my throat, no where else. Treatment plan: 7 weeks of radiaton, 5 days a week, 3 cycles of Chemo (cisplatin) 3 weeks apart.

Joanne

MJG1 · July 2016

Kari and Joanne

Thanks for the responses. We are looking forward to THE PLAN. This evening my husband came home from work with a right temple headache which KILLS him. I'm sure it's the nerves in and around his tumor. It breaks my heart to see him suffer in this way. Thank heavens for meds that kick it a little, but we're so ready to kick this with some powerful stuff!! I worry about some of the awful side effects beyond the throat and burning...It is a scary road all of you are on and I respect that you are willing to share with us and help us see our way a bit. Prayers and positive thoughts go out to all the SURVIVORS!

cardoza33 · July 2016

MJG1 said:
Thank you
Cardoza33 what was your treatment? surgery, chemo, radiation? Thank you, MJG1

treatment

I had 35 rads and 2 full days of cisplatin. Surgery was reserved for the end if we did not get it all. I had it on my tongue, nasal cavity, tonsil and lymph nodes. They said regardless of surgery I would have the full treatment after so they suggested I try to get it without surgery. My first 3 month scan showed no evidence of disease. I had my 6 month scan Monday and should get the results Thursday. Praying for NED.

cardoza33 · July 2016

cardoza33 said:
treatment
I had 35 rads and 2 full days of cisplatin. Surgery was reserved for the end if we did not get it all. I had it on my tongue, nasal cavity, tonsil and lymph nodes. They said regardless of surgery I would have the full treatment after so they suggested I try to get it without surgery. My first 3 month scan showed no evidence of disease. I had my 6 month scan Monday and should get the results Thursday. Praying for NED.

By the way, I was scheduled

By the way, I was scheduled to have 3 days of chemo, but after I went into hospital after both of my prior chemo doses and the daily rad scans looked like my tumor had radically shrank quickly, Dr. decided against 3rd chemo.

wmc · August 2016

Because there is side effects..........

Yes, there is side effects with radiation and chemo. I only had surgery and have some side effects, where others have much more than I do. I was stage 3 just above my vocal cords. As I was going to surgery I was thought to be stage 4, but when they got in it turned out to be only a 3. They removed my larynx and did a neck dissection on both sides as a precaution.They removed 86 glands and they were all clear. Yes, the possibility of side effects can be very concerning. He will have some but may only just a few. We all are different. What you both want to remember is you are fighting for your life. Like myself, I was given two choices, to have my larynx removed and breath through my neck the rest of my life, on go home and wait. My lungs were too bad and I would not survive radiation or surgery. Not a hard choice so I wanted to live so I breath through my neck and do very well. I can still even speak as the put in a prosthesis to divert the air so I can. It is a tough road to go down, and you both will have bad days. That is what we are for. Just take one day at a time, and give it 110% and you will get to the end of the tunnel and there is light. I had to learn how to eat, and swallow as everything you use to swallow was attached to my larynx which is gone. Then I had to learn how to voice with no vocal cords. That was 34 months ago and I am still NED and love my life. When this is over and he recovers which can take some time, you both will look back as be so glad you fought, and won. I do see life different and it is very precious and we all just took it for granted. Many on here have had BOT and can answer questions that I can't. I have followed their up's and downs, and learned so much from them, but never walked in their shoes. What I found that helps is, acceptances, humor, faith in yourself, and prayers do get answered. Only 5 thought I would live, and that is counting myself, my wife, my doctor, and two friends from work. We have 250 employees, and my brother, son, and Father-in-law all thought I would not. Have faith and believe.

Bill

MJG1 · August 2016

wmc said:
Because there is side effects..........
Yes, there is side effects with radiation and chemo. I only had surgery and have some side effects, where others have much more than I do. I was stage 3 just above my vocal cords. As I was going to surgery I was thought to be stage 4, but when they got in it turned out to be only a 3. They removed my larynx and did a neck dissection on both sides as a precaution.They removed 86 glands and they were all clear. Yes, the possibility of side effects can be very concerning. He will have some but may only just a few. We all are different. What you both want to remember is you are fighting for your life. Like myself, I was given two choices, to have my larynx removed and breath through my neck the rest of my life, on go home and wait. My lungs were too bad and I would not survive radiation or surgery. Not a hard choice so I wanted to live so I breath through my neck and do very well. I can still even speak as the put in a prosthesis to divert the air so I can. It is a tough road to go down, and you both will have bad days. That is what we are for. Just take one day at a time, and give it 110% and you will get to the end of the tunnel and there is light. I had to learn how to eat, and swallow as everything you use to swallow was attached to my larynx which is gone. Then I had to learn how to voice with no vocal cords. That was 34 months ago and I am still NED and love my life. When this is over and he recovers which can take some time, you both will look back as be so glad you fought, and won. I do see life different and it is very precious and we all just took it for granted. Many on here have had BOT and can answer questions that I can't. I have followed their up's and downs, and learned so much from them, but never walked in their shoes. What I found that helps is, acceptances, humor, faith in yourself, and prayers do get answered. Only 5 thought I would live, and that is counting myself, my wife, my doctor, and two friends from work. We have 250 employees, and my brother, son, and Father-in-law all thought I would not. Have faith and believe.

Bill

thanks, WMC

Thanks for the post. We're on the road to recovery!! One chemo down....8 weeks to go...then 7 weeks chemo/rad. we talked with the surgeon again yesterday and asked if he is good with us keeping surgery as a back up plan and he said, "YES" because it's p-16 driven so we're hoping for NED after 16 weeks of hell!! Thank you!

Base of tongue, tonsil, 4 lymph nodes P16 squamous cell carcinoma

Comments

Discussion Boards