What to Expect

I have HPV Neck Cancer and also had a right modified radical neck bisection, they aren't positive of the primary, but the PET CT said base of tongue.  I'm 9 of 35 treatments done with Radiation, and 1 of 3 of the Chemo fun fest.  I'm 41, pretty good shape, and have skipped the feeding tube for now, but gave up my 5 mile runs.  I plan on working through most/all of this, and have a high pain threashold.  I lost 98% of my taste several days ago, and have a sore throat, low grade fever.  I'm doing all the "stuff" swishing, lotion, brushing, swallowing excersies, etc...  I'm currently on the Miracle Mouth Wash, and thats it for pain meds.

Here are my questions:

1. What kinds of foods have "feel" good (without the taste).  It was a shock to just feel some of these foods that I used to love and now make me gag.

2. What can I expect on the sore throat, does it keep getting worse gradualy or exponentially?

3. Does the chemo get worse each time?  I have my next one next July 10th.

Thanks

 Jeff

Hey Jeff,

Sorry about your situation.

I don't know specifically about HPV neck cancer but I believe that radiation and chemo effects are probably generally the same for all cancer patients.  That is, the effects of both are cumulative; the more you have the worse the side effects get.

My husband has had several different kinds of cancer and has had radiation and chemo with all of them; the side effects have been cumulative all 3 times.

From what I've read on this board, you will probably need a feeding tube before you are finished; almost everyone loses weight with treatment and if you are unable to eat you will need some means to receive nutrition.  TPN is usually how the liquid food is delivered.

Good luck in your journey.

Joan L

On 7/1/2009 jeffy12 wrote:

I have HPV Neck Cancer and also had a right modified radical neck bisection, they aren't positive of the primary, but the PET CT said base of tongue.  I'm 9 of 35 treatments done with Radiation, and 1 of 3 of the Chemo fun fest.  I'm 41, pretty good shape, and have skipped the feeding tube for now, but gave up my 5 mile runs.  I plan on working through most/all of this, and have a high pain threashold.  I lost 98% of my taste several days ago, and have a sore throat, low grade fever.  I'm doing all the "stuff" swishing, lotion, brushing, swallowing excersies, etc...  I'm currently on the Miracle Mouth Wash, and thats it for pain meds.

Here are my questions:

1. What kinds of foods have "feel" good (without the taste).  It was a shock to just feel some of these foods that I used to love and now make me gag.

2. What can I expect on the sore throat, does it keep getting worse gradualy or exponentially?

3. Does the chemo get worse each time?  I have my next one next July 10th.

Thanks

 Jeff

 

Hi Jeff,

Sorry to hear that you are going through  this, but you will make it through as many of us did.

I can address the first question.  It was approx. 3 weeks into treatments when I first lost my taste and hated the TEXTURE of things along with the taste.The things that worked for me were applesauce, soups, frozen fruit bars...some are 100% juice not just sugar,  scrambled eggs.  Know its not a long list but for many weeks that was it for me.  I've never been a milk drinker but "smoothies" made with milk, ice cream, or instant breakfast mix  helped keep the weight up for many people.  Of course, Ensure is always recommended.

There is a book that I received as a gift called "Easy to Swallow, Easy to Chew" by Donna L. Weinhofen that has many recipes.  But in my case I was shopping and cooking for myself and this is a real cook book.  Most of the items would require more than I was able to conjure up the strength to make.  But if you have a cook in the house it might be worth buying. The recipes can be used for the whole family and most sound pretty good

Hope this helps.  Best, D.

Jeff, welcome to the club.... unfortunately. But you sound as though you have the right attitude! Like you I have (I'll be optimistic and say 'had') HPV generated SCC with unknown primary. Had a radical neck dissection in March followed by 6 weeks of RT. I did however avoid chemo, for which I'm grateful and wish you the best of luck.

From my perspective: the sore throat will continue and worsen. After a couple of weeks of RT I was unable to eat anything solid. Even now, nearly 5 weeks after the end of the radiation I'm still on the Boost/Ensure diet. As a result of the throat along with nausea I lost nearly 30 pounds. Don't think this is uncommon. If you're able to continue to eat soft solid foods during your treatment.... bravo!

I decided to tough it out without a feeding tube. In retrospect I think I made the wrong decision, in that it became a monumental task to swallow even water, let alone the Boost. But that's your decision.

Keep us posted, and please ask any other questions you can think of.

David

Thanks everyone, I am going to try the scrambled eggs soon, need to buy eggs though.  I am putting off the peg tube, talked to my radiation doctor at my session this evening and he's ok with that, and said its easy to add later. My girlfriend is a general surgeon, and is keeping a close eye on me, at least when she's not on call.  Just a little bummed because they told me around the 3 week mark for my taste buds.  I lost a little weight so far, mostly from the first chemo session, and am working to get some of that back.  Can't be too bad if I'm still sleeping with my retainer :-)

What drugs worked best for you guys for the pain? From my surgery the Oxycodone just made me dizzy and loopy, and not much for the pain, same for the Hydrocodone.

Thanks again,

Jeff in Minneapolis, MN

Everything made me gag!  I remember thinking that something as easy as eating should not be such a chore...........food became THE ENEMY, but I got through it.  Lived on Carnation Instant Breakfast and ice cream shake twice a day.......made it with whole milk, 2 scoops of ice cream....and it took about 15 minutes to get it down.  I'm sure the PEG tube would have made things easier, but I did get by without it and I'm not sorry.  I'm almost 11 months out of radiation treatment...not chemo, just surgery and radiation.  Hate to tell you........still can't seem to find any "feel good" foods.  Have very little taste for anything sweet...........fruit still tastes AWFUL.  Can handle most veggies, but not raw......and anything spicy burns.  There are times when all this really ticks me off..........like last night when I bought some really great looking bing cherries...........ICK.  So I took them to work to check if they were sweet or not.......and i guess they were great!  You get used to the new "normal".........but it still is very annoying at times!!!!

Hang in there!   By the way, I never needed any pain meds; I hate the way they make me feel.  Used Biotene Mouthwash, Oasis Dry Mouth spray, baking soda rinse.  Miracle Mouthwash almost did me in........really made me gag and couldn't use it.  Everyone is different!

Steph

Hi:

 My husband is almost 3 weeks out of RAD.  His main diet during the procedure was cream of wheat with a lot of milk and sugar.  He also had Ensure and rich smoothies with Slim-fast and Egg-beaters added.  He lost some weight but overall did well.  He is now adding some foods and little tastes of whatever I have for dinner.

Good luck to you and remember this to shall pass.

Janey

Jeff sorry to hear what you are going through. I had 33 rad treamts finished in Feb but still remember the day my taste buds went away. It was about the 3rd week of rad tx. and was so frustrated when it happened. I also did not have the PEG and am glad i didnt. I did lose a lot of weight (35-40lbs) and really didnt have a lot more I could lose but I found that after a while it got impossible to swallow anything to includ spit. that is when I lost the bulk of my weight. It wasnt until almost a month after treatment adn the mouth and tongue sores healed that I was able to try swallowing again. The pain meds were not helping much. they mostly kept me loopy and unaware. I was on percocet, oxycodone and liquid morophine. there was another one I was on for a short time that made me hallucinate and I dont remember what the name of it was. After I was able to get off the harder drugs I started feeling better instantly. I was aware of the swallowing pain alittle more but was confident enough to power through it. With that said I started eating and swallowing regardless of the pain. I know am 4 months after treament and have gained 20 lbs but seem to have platued here. My swallowing is difficult and still painful but I can get most things down except hamburger and bread items. I currently eat a lot of pasta and frozen yogurts. You have a ways to go but like all of us will say, recovery comes at a slower pace than you think it should. Hong in there and keep asking the questions. You will do fine.

 God Bless

Tom

Jeff,

 As one who has been through the whole procedure, eating will become more difficult and you will have less and less taste.  My advice is, dont be a hero, have a PEG tube put in.  There is no downside as installation is easy and then menu considerations are eliminated.  

It is possible that you may not need it, but why take the chance, in that it may not be possible to install later on.

Arlington

On 7/1/2009 jeffy12 wrote:

I have HPV Neck Cancer and also had a right modified radical neck bisection, they aren't positive of the primary, but the PET CT said base of tongue.  I'm 9 of 35 treatments done with Radiation, and 1 of 3 of the Chemo fun fest.  I'm 41, pretty good shape, and have skipped the feeding tube for now, but gave up my 5 mile runs.  I plan on working through most/all of this, and have a high pain threashold.  I lost 98% of my taste several days ago, and have a sore throat, low grade fever.  I'm doing all the "stuff" swishing, lotion, brushing, swallowing excersies, etc...  I'm currently on the Miracle Mouth Wash, and thats it for pain meds.

Here are my questions:

1. What kinds of foods have "feel" good (without the taste).  It was a shock to just feel some of these foods that I used to love and now make me gag.

2. What can I expect on the sore throat, does it keep getting worse gradualy or exponentially?

3. Does the chemo get worse each time?  I have my next one next July 10th.

Thanks

 Jeff

 

Jeff,

My husband had surgery for tonsillar scc with neck disecton end of April.  We're on rad tx #20....just 10 to go.  My husband has had very bad episodes of anxiety since the 1st day of diagnosis.  Basically, he has been on a need to know basis...& after seeking info & the wisdom of those who've experienced this treatment...I scheduled him for the PEG when it was initially advised.  I'm glad...but more importantly, he's glad.  Dreading it was worse than having the procedure done...& he is doing very well with the tube feedings.  He has no desire to eat so it is a definite positive since he has already lost almost 40 lbs. since the diagnosis.  It seems that it is the exception & not the rule to have the PEG. The only thing he still taste is buttermilk...good for you, but YUCK!

Hope you do well with treatment...much encouragement can be found on this site.

Blessings,   DT