Treatments

I'm one of those that went through treatment without a tube.  It wss very dificult to swallow, and by the end of treatments, I basically was having a glass of Gatorade a day.  Losing lots of weight through treatment.  If I had it to do over, I would get the tube to supplement what I swallowed.  If you find that you are having difficulty swallowing either because of the pain or just the motion talk to your doctor.  Not having the tube was my only sense off normalcy but that was probably a mistake in my case.  We are all different and have to make our own decissions on how we go through the treatment.

The fatigue will pass, and as Marine said, reset and sleep when your body needs it.

The effects tend to be backend loaded, with week 3-4 the start of the hard stuff.  They can put in a tube at any time, provided you are still eligible for surgery.  By the end, any calories will be good, I lived on homemade chicken soup broth with an egg and benecal mixed in.  You can order Benecal from the web.  If you haven't started yet, look in to saline infusion from your chemo infusion center.  I was there every day from week 3 on.   Canada probably also has some form of home nursing service which might be of help.  Dehydration is a severe problem, and you don't want to let it get started.  Know that it does all come to an end.  The actual time under treatment now seems brief (now, two years later), but it's minute by minute when you're in it.  You will get thru, many thousands do every year.

It is nice to hear from a fellow Canadian!  Glad you found this site early in the process. I did not find it until I was about 7 months post treatment. It still has been my saving grace.

I also had HPV16+ tonsil and base of tongue, 35 rads and 2 of three chemo Cisplatin.  I was in good shape until week 5, then the wheels fell off my bus.

What province are you in?  I am in BC. My oncologists told me that in BC they do radiation and chemo first, then surgery if need after. I have a friend in Sask, they did surgery first and will do radiation and chemo later if needed.  Two school of thoughts I guess.  I did not question the recommendations that my team gave.

I had to have a feeding tube by week 5. I was told it would be for about a month. Wrong! I had it for 10 months.  It was annoying at times, but also a life saver at other times.

Two bits of  best advice I can give... hydrate, hydrate, hydrate! I ran into a lot of trouble on that note. Caused a lot of unnecessary grief. Do your exercises!  The throat and swallow exercises they recommend are not to be taken lightly.  I met a former patient that did not do them and ended up on a feeding tube 5 years later!

I am now three months without my feeding tube. Eating has been slow, but gets better all the time. This is a marathon, not sprint. Patients is key. Small steps are to be celebrated.

I wish you well on this journey and hope you are one of the lucky ones like Dean54! He is a rock star!

Hi, my husband found his cancer the same way with a lump in the neck.  He had HPV+ BOT SCC.  8 rounds of Erbitux and 35 radiation treatments.  No surgery.  His oncologist recommended a PEG be placed before starting treatment.  It seemed crazy to put in a feeding tube so early so I did a ton of research.  It seemed to me that people were less likely to have longer term swallowing issues if they went through the treatment without a tube. We talked to the doctor who would place the tube and he told us he could put a tube in at any time, so he was cool if we wanted to wait until my husband needed it.  Well, he never did.  Finished treatment on November 10th and is doing great now.  Bread is kind of drying...but he eats everything else no problem.  Now, his throat was certainly sore towards the end of treatment and during the healing pasese.  He spent a couple months on a liquid diet (I made lots of smoothies, added in benecalorie for easy calories, he drank Ensure - the high calorie ones, etc.) but he never gave up swallowing.   I think he healed so fast because he was able to keep his calories up...even when he went to the liquid diet.  

I'd say getting calories in is the most important thing.  So, if that means a PEG, than that's the way to go.  But, the way we saw it, was that it couldn't hurt to give the no-peg route a try. 

Sorry for the delay in replying to your questions. I had to have the tube because I couldn't swallow anything due to a sore throat. Weight loss was the main concern. I started with a nasal tube for 6 days while waiting for a peg tube insertion. I never had any problems with soreness, infections or even being uncomfortable. Even with having the tube as my source of nutrition I lost 67 lbs and was hospitalized twice for dehydration. 

I recommend keeping a journal or blog type record of your journey.  I did and reread it last week...I had already forgotten so much!  Amazing how the brain shuts down so you can carry on!

As for the chemo choice. My medical oncologist explained it as my Rad oncogist was Batman, he was Robin. I made the call to include all options at once to kick this monster in the a$$   no two people are the same, I was one of the few at the clinic doing both when I was going thru. Trust your team. Woulda, coulda, shoulda is wasted energy.

Hope you have had a good couple of days. Rest when you can. Eat when you can. Find something positive in each day.

Hello,

First, you are making it through this!  You've already done two weeks!!  Second, ask the techs and any nurses that are caring for you about tips to help you feel better.  Often they have ideas or can prescribe something to make life a little more bearable as you get through it day by day.  Keep up the liquids the best you possibly can and keep trying different things.  One food/drink may work for one day and then be disgusting the next, so try something else. Do you have access to a high power blender, like a Ninja, that you can make protein shakes? 

Hang in there.  Just prayed for you!

debbiel0 said:

Fellow Canadian!

It is nice to hear from a fellow Canadian!  Glad you found this site early in the process. I did not find it until I was about 7 months post treatment. It still has been my saving grace.

I also had HPV16+ tonsil and base of tongue, 35 rads and 2 of three chemo Cisplatin.  I was in good shape until week 5, then the wheels fell off my bus.

What province are you in?  I am in BC. My oncologists told me that in BC they do radiation and chemo first, then surgery if need after. I have a friend in Sask, they did surgery first and will do radiation and chemo later if needed.  Two school of thoughts I guess.  I did not question the recommendations that my team gave.

I had to have a feeding tube by week 5. I was told it would be for about a month. Wrong! I had it for 10 months.  It was annoying at times, but also a life saver at other times.

Two bits of  best advice I can give... hydrate, hydrate, hydrate! I ran into a lot of trouble on that note. Caused a lot of unnecessary grief. Do your exercises!  The throat and swallow exercises they recommend are not to be taken lightly.  I met a former patient that did not do them and ended up on a feeding tube 5 years later!

I am now three months without my feeding tube. Eating has been slow, but gets better all the time. This is a marathon, not sprint. Patients is key. Small steps are to be celebrated.

I wish you well on this journey and hope you are one of the lucky ones like Dean54! He is a rock star!

 

Many Thanks, debbie10, for your helpful comments re: hydration, exercises, or lack thereof, particularly the timeline with feeding tube recommendation(s). My team's protocol was emphatic, "insert your feeding tube prior to your treatments." This way one's resistant is relatively strong while alleviating potential infection so that you're strong enough/normal resistance before one begins prolonged cancer treatments i.e., before "the stuff hits the fan!"

All the Best to you and others from So Calif. 

(This is my first post for CSN)

My diagnosis sounds identical to yours. SCC HPV+ BOT stage 3 with neck node involvement.

I did 35 rads and chemo.

I did not use a PEG tube or chemo port.

No PEG was extremely difficult. That said, I'm very glad I didn't use one and if I have to do it over again, I still would not use one. 

Just over a year since treatment started and I'm 100% back to normal. 

Good luck to you!

Garrie said:

Peg tubes

Hi OKCnative,

I am very curious why you were against using a peg . You mentioned that it was very difficult without one. I am on liquids now so l will have to weigh the pros and cons before l make a decision. 

It's great to hear you are back to your normal self. I guess everyone's recovery time is different. During your recovery did you have issues with your swallowing ?  

Did you have any dental issues during your recovery ? I guess the radiation can  damage a person's teeth .

 

 

 

 

 

First, my cancer center was very open to whatever choice I wanted to make - as long as I agreed that if it became medically necessary that I would get one.

That said, I had spoke with several people I know personally, and other I later met through this forum, that live overseas (I'm in the USA). They all talked about how PEG tubes were not the norm there and joked that sometimes Americans can be pretty soft and don't want any pain whatsoever - just give them a pill (or in this case a tube). I also spoke to my speech rehab people and they agreed that patients that didn't have a tube recovered quicker and were eating solids again much faster on average. I also wanted to keep my life as normal as possible. I drove myself to daily radiation early every morning and then on to work. A PEG tube would have been mentally defeating to me and simply reminded me I was suffering.

I also didn't see the point. The docs told me I MUST exercise my throat every day - both with and without food/liquids and I also needed to consume at least 2,500 calories a day. Well, if they want me to swallow anyway, why not just get my calories then and what is the point of the PEG tube? Yes, it was absolutely brutal. But, I knew it was temporary and by avoiding the PEG tube I was making it even shorter of a bad experience. I went ahead and did the PEG consultation because the docs said that if I ended up needing a PEG it would have to be done quickly and I should get the consultation out of the way now. I really didn't like the surgeon I met with about the PEG tube. Young cocky guy who said "I 100% guarantee you'll be back for PEG, everybody gets one." I walked out of the office and told me wife, "I'm not going to do it unless I'm literally dying."

It was miserable, it was the most pain I've ever experienced and I'd do it the same way if I had to do it again. I refused to allow my whole life to be upended by this disease and I credit that for a complete recovery.

Everyone picks their own path. I'm very happy with the path I choose.