Newbie Head and Neck SCC

Ptzman

New to this group. Looking for information. My husband was diagnosed with SCC in the left tonsil in July 26, 2018. It has metastasized to 2 lymph nodes in his neck. No surgery beyond the surgical bx to locate the primary tumor in the tonsil. Did not obtain clear margins. He began treatment three weeks ago. He will receive the second dose of Cisplatin tomorrow. He has the usual side effects that most patients go thru with the rad/chemo for this cancer. Those side effects started all of a sudden this past Wednesday night. It was the day of the 13th radiation treatment. Mouth sores popped up on his tongue on the same spot on each side of his tongue, throat became much more sore with swallowing also becoming much more painful. He had been flying thru treatment till that point! We know all this is supposed to get much worse before it gets better. The questions are: will this next dose of Cisplatin be much harder than the first? He had no count drops, no nausea or vomiting (pre dosed to prevent this). Will the mouth sores that are already present heal at all while he’s in treatment? Will they come and go or just keep piling on? He does not want the PEG and has concocted a numbing cocktail from biotene and vicious lidocaine that he takes right before he tries to drink the protien shakes or eat super soft foods. What is your experience with NOT having the PEG? Can a person make it thru this horrible treatment without it? Thanks for any help you can offer.

Andrea39

Well in term of the side

Well in term of the side edfecrs and the severity of them everyone is different. Usually the the last two weeks of treatment and the two weeks after treatment are the worse for many of us here. As for peg tube, it is highly recommended. Dont hesitate to get it. I am on tube 12 weeks post treatment. For me it is a must. Best of luck.

Lord Soth

Hi Ptzman,

Hi Ptzman,

This is my first post ever, but I have used these sites to read other posters who have been through simliar experiences, which has helped me get through my treatment. Andrea39 is right,everyone is different in terms of side effects during and after treatment. I want to share my story with you and your husband to let you know it does get better.Its certainly not an easy thing to go through but your husband sounds strong. My situation is very similar to your husbands. I was diagnosed with SCC right tonsil, base of tongue, with one large lymph node in Nov17. I am 46, overweight 220pounds (100kgs) Dr wanted to operate, but my wife and I decided rad/Chemo best option for us. I did 33 rads and 1 chemo.Feb18 to Mar18.  Similar to your husband, the first few weeks was fine and I ate normally. Then I had my first Chemo. I wasnt sick either, but my taste buds went completely, and I got tinnitus ringing in the ears (still have it)  and mucus buildup in throat was out of control. At this stage which was about 20rads in I pretty much stopped eating. I actually hated food so much I had to leave the room when the family had dinner. I lost 33pounds (15kgs) in a week. They wanted to tube me but I refused.(sounds like your stubborn husband so they gave me an ultimatum. Do not lose to much more weight or we will have to tube you. So everything I ate, I wrote down to reach my target. I needed 9000 kilojoules or 2100 calories per day. My wife got just about one of everything from the store, which I bite and spat out. At this stage its about eating to live, so I just found a few things that worked and went with that. I lived on protein drinks,warm soups,yogurts and canned fruit, all horrible to taste but most days I made my target. The Dr gave me the option of pulling out of my last two chemos as it would destroy my hearing more, and that the rad is the prime treatment.  (Not that im suggesting that would be right for your husband) By the end of treatement I had lost another 14pounds (6kg) and my mask was touch and go for fitting for the last five or so treatments. More motivation to keep the weight on, as your husband would probably concur, the mask fitting is a scary experience. So only want to do that once if you can. So you can get through treatment without the peg. The sores will be there for weeks after treatment. What I found important to do was,lots and lots of salt and bicarbonate mouth washes. (breaks up the mucus which has to be spat out all the time) regular jaw, tongue and mouth exercies,and swallowing all the time, no matter how painful it is. I took panadol all the way through treatment as well. The main thing that got me through was my strong, supportive and incouraging wife. Your husband sounds like he lucky like me to have that as well. Hope that helps abit. Any other questions, I'd be happy to answer. Might not be straight away, as I live in New Zealand. Wish you husband good luck from me

 

 

 

yensid683

Everyone's response

to treatment is different, but from what you've noted, his response is typical, or at least similar to mine

I was diagnosed in March of 2012 with stage IV-a base of tongue, with spread to the left cervical lymph nodes.  Treatment was in three phases.  First was induction chemo and  despite the pre-medication and what have you, Cisplatin and 5-FU did a numbr on me.  So much so that it lead to kidney issues which made it impossible to continue with the next two sessions.

I was switched over to concurrent rads and chemo, though with a different medication - Erbitux which was no where near as challenging as the cisplatin.  I was told during my radiation orientation that I would need to get a feeding tube and that I'd not really have any symptoms from the rads until about 2 weeks in.

It was exactly 10 sessions (two weeks) in when I hit the nasty that is rads.  Incredibly sore throat, so much so that I was back on prescription pain meds, thick mucus that was exceedling difficult to clear, loss of any sense of taste, saliva completely disappeared and swallowing became so painful that it was an act of courage to force myself to swallow.

I had a feeding tube and while it was a pain in the ***, it was a life saver.  My oncologist told me that before the wide spread use of feeding tubes, most head and neck patients didn't die from the disease but from starvation!

The sore throat built to its climax after 20 treatments, necessitating a change in pain meds, and continued that way until around 3 weeks after the last treatment.

When asked about the experience, I would describe the sore throat as having the sharpness of a freshly skinned knee, then having it dragged through miles of hot crushed glass, scrubbed with a red hot rust wire brush, mopped with a couple of coats of fire and then finally packed in thick library paste.

My last rad was July 5, 2012 and while I was back to work 2 months later, I did not recover my sense of taste until the middle of October,   Saliva has recovered but is no where near what I had, i need to keep a water bottle with me at all times, and can't eat anything but fresh vegetables and fruits without having extra fluid.

It may sound nasty, and I do agree it is a pain in the neck, but as a good friend of mine opined, I'm looking at the leaves on the trees and not at the roots...

 

hope he does well

OKCnative

My experience

My treatment for stage 3 SCC BOT with lymph node involvement ended in Sept. of 2017 (35 rads and 3 large doses of Cisplatin). My side effects began about week 4 and got pretty bad for awhile.

I resisted the PEG tube. It was not easy. I lost over 50 pounds and would cough up bits of blood and throat tissue. That said, if I had to do it all over again I'd still not do a PEG tube unless/until it became medically crucial. My docs said that not using the PEG tube is what most likely made my recovery easier. I was eating normally within a couple of weeks of treatment ending. It was not an easy choice though. I went through the orientation with the surgeon in case it became critical that I get a feeding tube. Eating was so painful my wife had to walk outside because she couldn't bear to hear me scream and see me in such pain. I also refused opioids for the pain.

A friend went through treatment for SCC of one tonsil about 3 weeks behind me. He also refused the PEG tube, made it through and is glad he did.

Everyone has a slightly different journey.

Ptzman

Thank you for your answers

Good evening to you all. Thank you so much for chiming in with your experiences. It helps tremendously. Today we found out he has a thrush infection thus explaining the overnight change. He is now on an anti fungal. Also added Tylenol 3. He has a consult to talk to gastro about the PEG. The Rad/Oncologist today again said don’t do it. Recovery will be faster and more complete if he does not get it. It’s so hard to know what to do. Hubby needs to get down 2000 calories a day (90 grams of protein) anyway possible. Yesterday and today that has been protein drinks like Ensure, Premier Protein or Boost. Anyone else experience thrush? Anyone else use Caphosol?  Anyone given a suction machine ti clear the phlegm? I truly appreciate all your time and sharing of your experiences. 

Ptzman

OKCnative said:

My experience

My treatment for stage 3 SCC BOT with lymph node involvement ended in Sept. of 2017 (35 rads and 3 large doses of Cisplatin). My side effects began about week 4 and got pretty bad for awhile.

I resisted the PEG tube. It was not easy. I lost over 50 pounds and would cough up bits of blood and throat tissue. That said, if I had to do it all over again I'd still not do a PEG tube unless/until it became medically crucial. My docs said that not using the PEG tube is what most likely made my recovery easier. I was eating normally within a couple of weeks of treatment ending. It was not an easy choice though. I went through the orientation with the surgeon in case it became critical that I get a feeding tube. Eating was so painful my wife had to walk outside because she couldn't bear to hear me scream and see me in such pain. I also refused opioids for the pain.

A friend went through treatment for SCC of one tonsil about 3 weeks behind me. He also refused the PEG tube, made it through and is glad he did.

Everyone has a slightly different journey.

Thank you for your honesty. 4 weeks left....it seems a lifetme. 

Ptzman

yensid683 said:

Everyone's response

to treatment is different, but from what you've noted, his response is typical, or at least similar to mine

I was diagnosed in March of 2012 with stage IV-a base of tongue, with spread to the left cervical lymph nodes.  Treatment was in three phases.  First was induction chemo and  despite the pre-medication and what have you, Cisplatin and 5-FU did a numbr on me.  So much so that it lead to kidney issues which made it impossible to continue with the next two sessions.

I was switched over to concurrent rads and chemo, though with a different medication - Erbitux which was no where near as challenging as the cisplatin.  I was told during my radiation orientation that I would need to get a feeding tube and that I'd not really have any symptoms from the rads until about 2 weeks in.

It was exactly 10 sessions (two weeks) in when I hit the nasty that is rads.  Incredibly sore throat, so much so that I was back on prescription pain meds, thick mucus that was exceedling difficult to clear, loss of any sense of taste, saliva completely disappeared and swallowing became so painful that it was an act of courage to force myself to swallow.

I had a feeding tube and while it was a pain in the ***, it was a life saver.  My oncologist told me that before the wide spread use of feeding tubes, most head and neck patients didn't die from the disease but from starvation!

The sore throat built to its climax after 20 treatments, necessitating a change in pain meds, and continued that way until around 3 weeks after the last treatment.

When asked about the experience, I would describe the sore throat as having the sharpness of a freshly skinned knee, then having it dragged through miles of hot crushed glass, scrubbed with a red hot rust wire brush, mopped with a couple of coats of fire and then finally packed in thick library paste.

My last rad was July 5, 2012 and while I was back to work 2 months later, I did not recover my sense of taste until the middle of October,   Saliva has recovered but is no where near what I had, i need to keep a water bottle with me at all times, and can't eat anything but fresh vegetables and fruits without having extra fluid.

It may sound nasty, and I do agree it is a pain in the neck, but as a good friend of mine opined, I'm looking at the leaves on the trees and not at the roots...

 

hope he does well

Thank you for your honesty and detailed descriptions. It scares me but I realize I have to hear it to even remotely understand what my husband is going through. You say the PEG was a pain. What was most difficult about it? The care of it? The actual feeding process? 

Ptzman

Lord Soth said:

Hi Ptzman,

Hi Ptzman,

This is my first post ever, but I have used these sites to read other posters who have been through simliar experiences, which has helped me get through my treatment. Andrea39 is right,everyone is different in terms of side effects during and after treatment. I want to share my story with you and your husband to let you know it does get better.Its certainly not an easy thing to go through but your husband sounds strong. My situation is very similar to your husbands. I was diagnosed with SCC right tonsil, base of tongue, with one large lymph node in Nov17. I am 46, overweight 220pounds (100kgs) Dr wanted to operate, but my wife and I decided rad/Chemo best option for us. I did 33 rads and 1 chemo.Feb18 to Mar18.  Similar to your husband, the first few weeks was fine and I ate normally. Then I had my first Chemo. I wasnt sick either, but my taste buds went completely, and I got tinnitus ringing in the ears (still have it)  and mucus buildup in throat was out of control. At this stage which was about 20rads in I pretty much stopped eating. I actually hated food so much I had to leave the room when the family had dinner. I lost 33pounds (15kgs) in a week. They wanted to tube me but I refused.(sounds like your stubborn husband so they gave me an ultimatum. Do not lose to much more weight or we will have to tube you. So everything I ate, I wrote down to reach my target. I needed 9000 kilojoules or 2100 calories per day. My wife got just about one of everything from the store, which I bite and spat out. At this stage its about eating to live, so I just found a few things that worked and went with that. I lived on protein drinks,warm soups,yogurts and canned fruit, all horrible to taste but most days I made my target. The Dr gave me the option of pulling out of my last two chemos as it would destroy my hearing more, and that the rad is the prime treatment.  (Not that im suggesting that would be right for your husband) By the end of treatement I had lost another 14pounds (6kg) and my mask was touch and go for fitting for the last five or so treatments. More motivation to keep the weight on, as your husband would probably concur, the mask fitting is a scary experience. So only want to do that once if you can. So you can get through treatment without the peg. The sores will be there for weeks after treatment. What I found important to do was,lots and lots of salt and bicarbonate mouth washes. (breaks up the mucus which has to be spat out all the time) regular jaw, tongue and mouth exercies,and swallowing all the time, no matter how painful it is. I took panadol all the way through treatment as well. The main thing that got me through was my strong, supportive and incouraging wife. Your husband sounds like he lucky like me to have that as well. Hope that helps abit. Any other questions, I'd be happy to answer. Might not be straight away, as I live in New Zealand. Wish you husband good luck from me

 

 

 

Thank you

Thank you for making your first post and for your honesty about your experiences. So far hearing tests show no damage for my husbands hearing thank goodness. So sorry to read you have lasting effects from Cisplatin.  Yes, he was told  weight loss would mess with the mask fitting and warmed to be careful. At the same the doctor says don’t do the PEG!!! He has seen other patients get through without it and pushes the faster recovery time. My husband does miss work tremendously so the faster the recovery the faster he is back to it! 

Ptzman

Andrea39 said:

Well in term of the side

Well in term of the side edfecrs and the severity of them everyone is different. Usually the the last two weeks of treatment and the two weeks after treatment are the worse for many of us here. As for peg tube, it is highly recommended. Dont hesitate to get it. I am on tube 12 weeks post treatment. For me it is a must. Best of luck.

Thank you for your post and honest answers about your experience. Are you still using the PEG to supplement your eating or are you still unable to eat? 

Lord Soth

Ptzman said:

Thank you for your answers

Good evening to you all. Thank you so much for chiming in with your experiences. It helps tremendously. Today we found out he has a thrush infection thus explaining the overnight change. He is now on an anti fungal. Also added Tylenol 3. He has a consult to talk to gastro about the PEG. The Rad/Oncologist today again said don’t do it. Recovery will be faster and more complete if he does not get it. It’s so hard to know what to do. Hubby needs to get down 2000 calories a day (90 grams of protein) anyway possible. Yesterday and today that has been protein drinks like Ensure, Premier Protein or Boost. Anyone else experience thrush? Anyone else use Caphosol?  Anyone given a suction machine ti clear the phlegm? I truly appreciate all your time and sharing of your experiences. 

I am six months post

I am six months post treatment now, and still am battling thrush, because my salivary glands were toasted by about 4. I found having

regular warm showers, especially after rad was a good way to clear a lot of the mucus. I just used the shower head in my mouth to wash it all out. Tryed the dehumidifier, but not patience enough to sit there for hours with it.

My dietitian gave me drinks called Fresubin. 400 cal(20grams protein) and only 200ml in each.

It only took me 2 months after treatment for my tastebuds to come back almost 100%,

but salivary glands a different story. Dry mouth all the time. I am now eating everything I ate before treatment, just a lot slower, so tell your husband to hang in there, and he will be all most back to normal before he knows it. 

okeydokey

Ptzman said:

Thank you for your answers

Good evening to you all. Thank you so much for chiming in with your experiences. It helps tremendously. Today we found out he has a thrush infection thus explaining the overnight change. He is now on an anti fungal. Also added Tylenol 3. He has a consult to talk to gastro about the PEG. The Rad/Oncologist today again said don’t do it. Recovery will be faster and more complete if he does not get it. It’s so hard to know what to do. Hubby needs to get down 2000 calories a day (90 grams of protein) anyway possible. Yesterday and today that has been protein drinks like Ensure, Premier Protein or Boost. Anyone else experience thrush? Anyone else use Caphosol?  Anyone given a suction machine ti clear the phlegm? I truly appreciate all your time and sharing of your experiences. 

the thrush

my husband did very well all through treatments,but he did have the dreaded thrush once.It was very painfull.He took a pill and it got rid of it.It was flucouinze,or something like that.It worked fast.He didnt have a feeding tube.He was advised to get one by one dr,but rad dr said not to.He eat everything thru treatments,and now also-a week after treatment.He cant taste anything,so he says it is not pleasurable to eat.his mouth is sore but so far manageable.He only lost 12 lbs through it all.Dr said that was expected.He also takes ensure to boost his calories.He used magic mouthwash.It was a real help.Io have noticed he tires more easily-but he keeps on keeping on.I wish the very best for you Ptzman.Hoping you have a swift recovery.

yensid683

Ptzman said:

Thank you for your honesty and detailed descriptions. It scares me but I realize I have to hear it to even remotely understand what my husband is going through. You say the PEG was a pain. What was most difficult about it? The care of it? The actual feeding process? 

"pain"

the only real physical pain was after it was put in.  For the first few days it was a bit tender, but nothing like the throat pain.  The "pain" was more on how it got in the way all the time.

I used to sleep on my stomach, that ability went away with the 18 or so inches of plastic tubing sticking out of my stomach.  keeping it in place was an exercise in and of itself.  I first tried taping it in place, but the tape was very irritating to my skin.  At my first post tube insertion visit to my radiation oncologist, one of the nurses gave me a box of something called "Spandage", essentially an elastic tube that, cut to length, fit around my middle like a tee shirt and kept the tube in place.

feeding was simple, I had a prescription liquid diet called 'Jevity', and meals were two cans, gradually poured into the tube. 

Some cautions to be aware of.

There will be two clamps, one that caps the tube and another that clamps the tube itself near where it penetrates the skin.  Keep both closed when not in use.  Stomach contents can leak into the tube if the lower clamp opens.

Also, I discovered this the hard way, when you are feeding and have both clamps open, and you need to sneeze or cough, if you don't close the belly clamp, everything in the tube and some of what is in the stomach can come shooting out, and it can travel some distance.  I found a spot on the ceiling after this experience.

Removal of the tube was really simple, a quick tug by the gastroenterologist and it was out.   the site was a little tender for a couple of days but no real challenges.