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Treatments

Garrie
Posts: 9
Joined: Sep 2018

Hi,

Recently l have been diagnosed with  squamous cell carcinoma ( hpv virus ) I discovered  a lump in my neck and sure enough it was cancer. The cancer is in 1 lymph node in my neck and their is a tumor  on 1 side of my tounge  at the base. The oncologist thinks that this is the primary.

I am receiving 7 weeks of radiation ( 35 treatments ) . As of today l have received 8 treatments .

The only side affects  of the radiation so far are extreme  fatique and dry mouth. I am still able to swallow okay .

I am  concerned about eventually no being able to swallow and having a feeding tube . Any info would be appreciated ..Thanks...Garrie

MarineE5's picture
MarineE5
Posts: 937
Joined: Dec 2005

Garrie, 

I am sorry to read that you are here asking questions, but this is a very good site to find the answers you seek. There are many knowledgeable people here that will guide you along the path you are taking. 

I went thru this in 2004, Base of Tongue cancer but had Surgery to remove the tumor, Radical Neck Disection to remove the invloved Lymphnodes, and a PEG Tube. My Surgery involved the removal of part of my Tongue, so I had no choice about the PEG Tube. About 50 percent I would guess receive the PEG tube, some Doctors suggest to not get it so we don't lose the swallowing motion. It can be inserted if you need it later in treatments if required.

Fatigue will be an issue for you for a spell, listen to your body, sleep when needed, eat as often as you can, and above all stay Hydrated. If you feel any discomfort, alert your Cancer Team, Doctors and Nurses so they can keep your discomfort to a minimum. Ask for "Magic Mouthwash" if you need it. I used the Baking Soda and Salt solution as often as every 20-30 minutes if needed to. I was unaware of "Magic Mouthwash" at the time. 

You will get thru this and ask as many questions as needed. As I mentioned, a lot of knowledge here.

My Best to You and Everyone Here

Garrie
Posts: 9
Joined: Sep 2018

Thanks Marine for your helpful advice. I have been reading alot about treatments for our type of cancer. My oncologist offered either radiation or robotic surgery.  I chose radiation because he seemed a little negative  about the surgery. He mentoned the robotic surgery ( l live in canada ) was relatively new and was still in the experimental stage. That made me a little nervous. It appears alot of people receive a couple rounds of chemo on top of their radiation  treatments as well. Did you receive any radiation or chemo ? 

MarineE5's picture
MarineE5
Posts: 937
Joined: Dec 2005

Garrie, 

I am pre Robotic Surgery time frame in our area, my surgery was in September of 2004. I can understand your reservations on having the Robotic Surgery done by someone not skilled in it yet. My surgery involved the removal of part of my tongue where the tumor was, and a Radical Neck Disection. After review of the Surgery, the Surgeon and Radiation Oncologist were sure all the cancer was removed in the Surgery. I was given 30 Radiation Treatments to make sure all was clear. Chemo was to be the Back-up plan if I had recurrance, which did not happen. 

I did have a bout with Melanoma a year later. My same Surgeon removed the Melanoma from my left cheek and did some plastic surgery to balance my face. I am lucky to have a wonderful Surgeon.

My Best to You and Everyone Here

 

SASH's picture
SASH
Posts: 409
Joined: Apr 2006

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.

 

AnotherSurvivor
Posts: 355
Joined: Dec 2016

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.

Dean54
Posts: 152
Joined: Aug 2017

But my original site was my tonsil and went thru 33 rad. plus 3 chemos. They put a feeding tube saying I'd have to use it but never did and could get all my nutrition thru Ensures and Liquid Hopes. About the only real side effects I had were a few mouth sores but the mouthwash took care of that.

Between the steriods and pain meds they gave me, I had plenty of energy and kept myself busy painting the inside of the house and keeping up my exercise.

Good luck Garrie and hopefully you will breeze right thru this.

debbiel0
Posts: 77
Joined: Jan 2018

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!

 

chesbeau's picture
chesbeau
Posts: 2
Joined: Sep 2018

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)

debbiel0
Posts: 77
Joined: Jan 2018

Sorry you have had to find your way here. I will say though, that you are in some pretty awesome company! The folks here are a wealth of information and encouragement. Lots of laughs, lots of tears but most importantly tons of support.

 

Garrie
Posts: 9
Joined: Sep 2018

Hi Debbie,

Yes, this site looks like it will be a great resource for me as l progress into my treatments.

I live in eastern ontario. Nice talking to a fellow Canadian although l wish it was under better  circumstances. I guess you never know when life is going to throw you a curve ball.

Did you have a nasal or peg tube ? Did you have any problems with infections with the tube? It seems that a lot of head and neck cancer patients have to resort to a tube at some point in their treatment.

I posted the question on treatments because most oncologists ,from what l read, will treat patients with a combination of radiation  and chemo. My oncologist is only giving me radiation ....... chemo was never discussed. 

When you had the feeding tube put in , was it because you couldn't swallow or was your mouth just too sore to eat ? It must have been a real battle for you....glad to hear you are improving  day by day.

Have a ton of questions.... but right now to tired to ask. Take care....keep fighting...garrie

 

 

 

 

 

 

 

 

 

 

Mavish
Posts: 57
Joined: Aug 2017

I am from Ontario, Canada, too. I did not have robotic surgery but I heard that Princes Margaret is very good at it.

I had regular surgery and than RT 35 accelerated sessions for Tonsil SCC with 2 lymph nodes.

I was offered PEG tube, but I rejected it. Not for a rational reason.  It was going to make me feel seiously sick. At some point eating became very painfull but I was able to survive without PEG. Swallowing function never become an issue. Pain made swallowing difficult. My mom prepared high calori soups for me with broth, cream, protein powder and vegitables. I also drink lots of Resource. Still I lost 20 pounds. 

Now after two years, I only find difficult to eat meat and bread, because odf the dry mouth and throat. You will get through this. If you are not sure about PEG tube, you can have it later if you need. 

Good luck! 

ByeByeCancer
Posts: 48
Joined: Sep 2017

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. 

 

Garrie
Posts: 9
Joined: Sep 2018

Hi ByeByecancer,

Thanks so much for your input on feeding tubes. It's hard to know what the right decision is in the beginning. I know it's so importang to keep swallowing as much as possible. I am at the end of week 2 with my rad treatments so l will wait and see how it goes. 

The cancer clinic where l go recommends a nasogastric tube . I guess it is much easier to put in than the peg.

I'm glad to hear your husband is recovering quickly. He must be a tough nut. 

Love the name......ByeByeCancer

 

 

debbiel0
Posts: 77
Joined: Jan 2018

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.

 

Garrie
Posts: 9
Joined: Sep 2018

Anyone out their experience nausia during radiation treatment . I finished my second week of radiation and finding it really difficult to eat because of nausia and no appetite. I have been taking anti nausia medication but it is not helping. 

grace2017
Posts: 28
Joined: Nov 2017

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!

Garrie
Posts: 9
Joined: Sep 2018

Hi,

Thanks for your suggestions grace. I finnally got my appointment  with a  dietician  today . She gave me a prescription  for a drink "Resource  2.0". It has 477 calories per 237 ml serving . It only has 1 flavour vanilla which tastes okay. I will use this beverage to keep up the calories . I feel alot better mentally now that l had  the meeting with the dietician.  I can't see my oncologist  this week and  i've only seen him once since l started treatment but that's another beef . 

My wife made some puree meals but they tasted too gross. Having such a nausiated stomach has only added too the problem. I have some meds for the nausia  but  not  helping yet.. Anyway, one day at a time .

OKCnative's picture
OKCnative
Posts: 300
Joined: Jun 2017

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
Posts: 9
Joined: Sep 2018

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 .

 

 

 

 

 

OKCnative's picture
OKCnative
Posts: 300
Joined: Jun 2017

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.

wbcgaruss's picture
wbcgaruss
Posts: 228
Joined: May 2018

My opinion is if you think you might need it to get the tube. If your medical folks think you should have one-get it. I could not swallow anything for 4 or 5 months but I did not know that was the way it was going to be when I started. I could not have lived and survived without the feeding tube. I could have said I'm going to tough it through and swallow no matter what but my throat was closed from the radiation no matter how hard I tried I could not swallow anything.  My cancer team would not start treatment unless I got a feeding tube and my nurse navigator was there for the operation and saw me afterwords-great support. So I think your cancer team has a good idea based on your cancer situation whether you should have the feeding tube. You will probably be going through enough difficulty with all that treatment involves let alone getting a tube put in when all of a sudden you haven't eaten in 3 days and now it's a must do right away. This treatment is tough-do what you think is best for you.

OKCnative's picture
OKCnative
Posts: 300
Joined: Jun 2017

Knowing what I knew about other patients and other countries, had my team told me they wouldn't proceed unless/until I got a PEG then I would have fired that team and went elsewhere.

My first docs wanted to do radical neck dissection on both sides of my neck and robotic surgery on my tongue. I knew there was no reason not to do rads and chemo first. I fired them and went to Stephenson Cancer Center. No surgery, no PEG, no chemo port, a short period of hell (weeks, not months) and then I was back to normal.

CivilMatt's picture
CivilMatt
Posts: 4570
Joined: May 2012

Hi Garrie,

Welcome to our H&N forum, where questions bounce around for years with no definitive answer, but these conditions will make your life so much more interesting.  Up till now you have probably been making very important decisions about your treatment and did not realize it is all on you (that is the way the doctors want it to be).

I was stage IVa, scc, bot, 1 lymph node, hpv+ (surgery, radiation and Erbitux) (Erbitux (Cetuximab) is the stuff which made Martha Stewart famous and go to jail).  Well, not the Cetuximab, but the falsifying her computer log and lying about it did.  Now, don’t you falsify anything or lie to us.

Reading through the posts I think I can pound a few more words of wisdom your way.

I had 2 PEGs, the first one very, very bad installation and it brought me to tears the few times I tried it. I got my second one around week 4 or 5 and it was a good day for my surgeon as it worked flawlessly, until week 2 post when I had it removed.  I was drinking at least one of my meals every day and looking back, I could have made it through WITHOUT any PEG. If I had a do over I would not let them talk me into a PEG.  I also would not get a nasogastric tube, no way!!!

It is important to tell you one of the very first things I learned from reading the posts on this forum, at least 1 month before my treatments began, was to drink lots of water and swallow often.  I thought, “that seems easy, I can do that” and I did.  I drank about 10 glasses of water every day during treatments and still drink at least 8 glasses a day at 6 years, 7 months post.

Anyway, you will need to figure out your drink of choice yourself, through trial and error. We can give you suggestions and recipes for the items which helped each of us get through this eating, swallowing, taste, no taste “food mess” you have gotten yourself into.  It really isn’t too bad and I rather enjoyed trying and finding what foods and drinks worked for me. I did not return to the Land-Of-Eaten for 7 months.  I drank a very large number of smoothies, protein drinks and I ate a ton of tomatoes and cucumbers in olive oil (I loved the tomatoes, cucumbers and olive oil).

One thing I don’t think I ever mentioned on here is I ate lots of popcorn, (from almost the beginning of recovery). My wife, Candy and I eat lots of popcorn and she once in a while mentions “how did you eat that popcorn, when you could not eat very much at all”?  You will figure it all out.

Your treatments must be just about over, I hope all is working out for you.

I had the new Reese’s Outrageous Blizzard treat (made with Reese’s Peanut Butter Cups, Reese’s Pieces, peanut butter and caramel topping blended with creamy world famous DQ vanilla soft serve tonight and I still like the Chocolate Chip Cookie Dough Blizzard better. Good to know.

Matt

Garrie
Posts: 9
Joined: Sep 2018

Hi,

Finally l have been able to stick my head out of my hole to post a comment..It's been a rough 7 weeks getting pounded with radiation. This last week post has been hell.The human body was not made to absorb radiation.

I lost 25 lbs so on week 5 received a peg tube . The feedings are going well so l think it was the right choice for me. I can drink some water right now but that's about  it.

The phlegm in my throat is hell. For me ,the phlegm is the worst side affect because it's constant. Many sleepless nights.l hope it stops soon.

I have been off the pain meds now for a week so l'm feeling good about that. They really screwed up my bowels.

My sense of smell is really weird now. Nothing smells like it should . Everthing smelIs like crap. I hope that changes in time.

Dentures don't fit right now probably because of the weight loss. F**K !

Anyway, it was so nice to finish the treatments. I'm worried about  the eating-swallowing thing down the road. I guess l should be taking one day at a time.

Garrie

 

 

 

 

wbcgaruss's picture
wbcgaruss
Posts: 228
Joined: May 2018

You are going through a difficult period for sure but you will make it you are out the other side now-finished with treatment. My Doc would not start treatment unless I got a feeding tube to start. As far as phlegm yes it is bad I was sleeping in a recliner and still, it would wake me up choking me I thought I was going to die a couple times (sorry to be so blunt but that is the way I felt at the time). Rinse with a baking soda/salt mixture a lot to stay ahead of it as best you can. It is a difficult time but you will get through it. Your situation for a lot of your treatment effects are difficult, smell, dentures, phlegm, sleep, and the worry of swallowing and eating again these things will pass but they are front and center now and certainly a lot to deal with. Glad you are off pain meds they do mess up your system and many times cause constipation. I had the same worries will I be stuck with a feeding tube but I am able to eat most anything now but definitely have to chew well before swallowing. God Bless & Good Luck you will get through this one day at a time-Russ

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