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Throat cancer Hpv

Liliallen's picture
Liliallen
Posts: 24
Joined: Dec 2012

I am new here my name is Lili , my husband has HPV tonsil stage 3 , radiation and chemo treatment , he will finish next week, he didn't want the Peg tube and he lost 3o pounds already I am so worried he didn't eat for the last 2 weeks just Gatorade . I wonder how is the healing process of the throat , how long it will take to start to eat at least shakes , soups .he Is doing 33 radiation God he will finish next week, but he is so weak from not eating food that one week It does look forever plus he has the last 2 chemo this week.blessings to all

phrannie51's picture
phrannie51
Posts: 3691
Joined: Mar 2012

I'm sorry your husband is having so much trouble getting anything down....it's very difficult without a tube, and for some it is impossible.  At least he's getting hydration down.  Do his Dr.'s know he isn't getting any nutrition?  If not, then you need to tattle on him...he needs food to help his fight....they can give him nutritian via IV's if he's not getting it any other way.  He might also want to get a tube, to carry him until he can eat again.  The two weeks or so after radiation can be worse than the last two weeks OF radiation....Everyone is different...some can start taking in shakes etc a couple weeks after rads, others it can be several weeks.

p

Liliallen's picture
Liliallen
Posts: 24
Joined: Dec 2012

Hi P, 

      He doesnt want the tube, at least like you say hopefully they can give nutrition  via IV , he feels so weak  , things would be different if he could get some nutritions, they give him some magic mouthwash but It is not working very well to be able to eat.The doctor will see if he can finish radiation this friday instead of 33 radiation , 30  hopefully the cancer is gone.It was no spreaded but size is about 4 cm I must say WAS ,declaring that cancer is gone.

Have a healthy and happy 2013!

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

you need to talk to his docs about a nutrition plan, it's critical for smooth recovery. my docs badgered me aggressively about getting those calories. they still do, actually.

throat healing process varies quite a bit from patient to patient, and in my case it wasn't quick. radiation can continue cooking for a long time--six weeks to two months isn't unheard of. 

blessings to you both.

 

Liliallen's picture
Liliallen
Posts: 24
Joined: Dec 2012

Yes but  with the holidays in between , hard to reach the doctors .Of course he doesnt want to  do the Peg tube , things would be different and he would be feeling better with good nutrition .

It is very hard I can see that he even has trouble drinking water, now he is trying gatorade to put some calories on, I make all kind of  kiwi, spinach protein shakes, instant breakfast , ensure , many things and he just has a sip of that.

Ohh well just leaving everything in God control and hopefully this week, we can talk with the doctors.

                 Blessings to you also , and declaring a Happy Healthy 2013 for everyone!

CivilMatt's picture
CivilMatt
Posts: 2933
Joined: May 2012

Hi Lili,

 

Welcome to the H&N forum.  I like the cat.

 

Your husband definitely needs nutrition and it appears to be either by  mouth or IV.  Like P51 said, you may have to tattle on him.  It is important to fight this battle from a position of strength and not weakness.

 

For me I had a PEG, but always managed to drink a couple of protein drinks a day and lots of water, lots.

 

As BSB said, throat pain is an individual thing and can last for weeks after treatment ends.  For me the pain wasn’t the issue, it was food in general.  I could not taste and at the same time hated the taste, but worse than that I hated the texture and feel of most foods.  I popped my PEG at 2 weeks post and lived mostly on Smoothies for 7 months.  Now I am back to eating and relearning how to taste (close to normal people).

 

Best,

 

Matt

Liliallen's picture
Liliallen
Posts: 24
Joined: Dec 2012

Thanks, my cat looks a lion , 20 pounds. and Thanks for your reply,It is good to share tips with people that they are going through the same situation. Yes you are very right  about the importance of a good nutrition I am worried with the 2 chemo this week because I can see him so weak , he spends the day in bed he has no enerygy for nothing and I think things would be different with nutrition to give him more energy and fight the disease .

I am glad that you can start to feel like normal again, the most important thing is to get rid of the cancer but I know that must be hard and frustrating not to be able to taste the food.

My husband is in such a pain now , It is hard even to drink water.

Happy Healthy 2013  for you! blessings

Pam M's picture
Pam M
Posts: 2194
Joined: Nov 2009

Getting enough water is the MOST important thing.  If you think he isn't getting in the amount his doctors say to drink, please get him in to his treatment center or hospital.  It's AMAZING how much better many people feel after getting IV fluids to catch up on hydration.  Just having enough liquids makes it easier to take in liquids (and any other nutrition you can get in by mouth).

The rinse my docs gave me (like Magic Mouthwash, but different) didn't do much for my pain.  I learned to time my pain medications to help me get in calories.  I'd take my hydrocodone about 1.5 hours before I planned to have a "meal", then viscous lidocaine just before the "meal".  Thoroughly blended (thinner) smoothies worked better than food for me.

Hope he starts to feel a little better soon.  Thanks for the New Year Wishes - here's hoping for a more healthy year for all of us.

CivilMatt's picture
CivilMatt
Posts: 2933
Joined: May 2012

Lili,

 

Hey, what happened to the cat?  Just kidding, it is nice to put a face with the name.  Maybe if he holds the cat he will fill better.  I know that petting cats and dogs goes along way toward making me feel better.  Our cat seeks me out and then proceeds to tell me to pick her up.

 

Flash, pets cure cancer (if only it were so easy).

 

Matt

Liliallen's picture
Liliallen
Posts: 24
Joined: Dec 2012

My cat follows us everywhere he thinks that it is a dog.BTW treatments are really hard and burns the mouth and chemo makes people sick but I can see how succeful are to cure the cancer.it is a bless to read all the testimonies here of how people is cancer free.

Have a nice weekend !

NJShore's picture
NJShore
Posts: 411
Joined: Nov 2012

Hello, my husband is 2/3rds of the way through treatment, 2 chemo's and 10 rads to go, and also has no PEG. His doctor however is watching pain levels closely, and making sure he's medicated enough to tolerate some soft foods. He seems to be on a cereal and milk kick this week, he says it helps With swallowing. He also does the swirl 10 mins before eating. Tiny bites chewed for minutes and we sit at the table for at least 90 minutes a meal, then straight to bed To sleep off the meds til he's awake again. He's lost just 10 lbs during his first four weeks. I would swear he hasn't lost more because we manage side effects with medicines as much as possible, and also the side effects of those drugs.

i too think advocating for your husband, by telling the drs ASAP, is a good idea. I wouldn't hesitate, if he gets too bad they may have to delay treatments, and that's a good thing to avoid if you can. 

We also managed tiny slices of a pot roast buried in onion soup and angel hair pasta today. Yogurt with mushy fruit (no seeds) is really good too.

i wish you luck.. Keep us posted!

 

phrannie51's picture
phrannie51
Posts: 3691
Joined: Mar 2012

Milk was a life saver for me during treatment....it's nutricious...PLUS it's hydration.  Since he's so very weak, and he's having so much trouble swallowing, I'm wondering if hydration isn't more of a problem right now than nutrition.  Lack of hydration makes a person VERY weak, dizzy...and they feel terrible.  The only thing a person doesn't feel with dehydration is thirsty....If you can't get a hold of the Dr., you might want to take him into the Emergency room at a hospital, and let them know what's going on.....The very worst I EVER felt during treatment was when I was dehydrated.  Pinch the skin on the top of his hand...if it keeps the "pinched" look for more than a few seconds he's dehydrated....and that's far worse than hungry.

p

Liliallen's picture
Liliallen
Posts: 24
Joined: Dec 2012

Thank you so much for taking your time for advices and opening me the eyes about lack of hydratation.Tomorrow he has to see the doctor so it gives me relief but he has the chemo also which It is very hard on the body specially when the person is already weak and Thursday the last chemo .well It is very hard but He is almost at the end of the treatment 

God bless you and thanks again for sharing your experience and for your help

Skiffin16's picture
Skiffin16
Posts: 8076
Joined: Sep 2009

Awesome people here...this is a great community of expereince and survivorship.

I too was Dx as STGIII SCC Tonsils, and a lypmhnode HPV+... Nine weeks of chemo (three week cycles), then seven weeks of concurrent weekly chemo and the 35 daily rads.... Tonsils came out up front...

That was back in early 2009, finsihed up mid 2009, clean an clear since.

I too did not have the PEG, not because I didn't want it, it just wasn't prescribed.

I switched over to mainly 95% Ensure Plus midway through rads, and for several weeks after. I did manage to eat a few sliced peaches each day, mainly to keep the throat muscles working.

That's important as is hydration, hydration is huge, that'll put you in the hospital faster than most anything.

Where he is right now is pretty close to his lowest point as for pain, not taking in enough calories and hydration, and will continue for a few more weeks after treatment ends. Even though treatment ends, the "cooking" process continues for a few weeks post Tx.

I lost weight easily nearly a half pound a day during that last few weeks. He really needs to take in as many calories and as much hydration as he can several times a day, just to maintain.

While Gatorade provides the electrolytes, I'm pretty sure it's not going to give him the calories and the vitamins/minerals something like Ensure or Boost will..nearly 350 calories per can....and he needs somewhere in the 2000 - 3000 calories a day,

More than likely he should be able to do shakes and such now..., with pain meds. I had the numbing lydocaine type magic mouthwash, or liquid hydrocodone or oxicotin as an initial pain solution. Giving me enough time to down a few Ensures, a few sliced peaches a glass or two of water. Then chased that with a ground up Percocet for the pain that would follow.

A lot of warm to hot showers helped me as well, not sure why, but it was soothing and took any initial pain after feedings away.

His main problem as for eating and such for a few months will be lack of taste, and no or nearly no saliva. Myself any several carried a bottle of water 24/7 for several months.

Fortunately nearly all of us get taste back, and most if not all salva. It's just a really slow process, one measure in weeks and months.

If you notice the first post on this forum, you'll see the SuperThread.... Tons of excellent information and links on it that I'm sure you will find helpful in the near future and a long the way.

Again, welcome...

Best ~ John

 

 

 

 

 

 

Liliallen's picture
Liliallen
Posts: 24
Joined: Dec 2012

For all the information,I am trying everything with him , instant breakfast , ensure, I make smoothies with fruits , another with spinach kiwi vainilla protein ( I personally like this one) but nothing work,he takes some one sip,and everything go to the garbage 

For the last 2 weeks if he had 300 kcal  per day is too much , the next 2 days he has the last 2 chemo which are very hard specially being so weak , he will finish radiation January 8 but I didn't know about the cooking process continues for a while .

He starts with 187 pounds and now he is like 148, yes doctor prescribed him that magic wash but doesn't seem to work , the good thing is he didon't loss his voice .

tomorrow we will see  what the doctor says  last week it was hard to reach them with the holidays or they are in a rush if you are no quick with all the questions in less that 5 minutes you are out .

ohh well I can't wait that this night mare ends , it is very hard to see a person suffering that much , my mom lost the cancer battle many years ago, but my husband situation is different I know he will make it , but it worries me his lack of nutrition.

thank you again John for your long reply and lot of information.

blessings,

Lili 

 

 

 

Skiffin16's picture
Skiffin16
Posts: 8076
Joined: Sep 2009

So out of curiosity, why is the food going to the can after a few bites...pain, no taste, etc...

Unfortunately it's just one of those things that you gotta do...take in calories.

Most all of us can relate that food either has no taste, or just plain tastes bad. Even worse is if it tastes bad and is painful also.

But unfortunately, you do what ever it takes to get it in you.

Hopefully he'll realize that, or he's just going to add to his situation, losing weight. You can get away with it for awhile, but eventually it catches upo to you...it always does.

Best ~ John

 

Liliallen's picture
Liliallen
Posts: 24
Joined: Dec 2012

For all the information,I am trying everything with him , instant breakfast , ensure, I make smoothies with fruits , another with spinach kiwi vainilla protein ( I personally like this one) but nothing work,he takes some one sip,and everything go to the garbage 

For the last 2 weeks if he had 300 kcal  per day is too much , the next 2 days he has the last 2 chemo which are very hard specially being so weak , he will finish radiation January 8 but I didn't know about the cooking process continues for a while .

He starts with 187 pounds and now he is like 148, yes doctor prescribed him that magic wash but doesn't seem to work , the good thing is he didon't loss his voice .

tomorrow we will see  what the doctor says  last week it was hard to reach them with the holidays or they are in a rush if you are no quick with all the questions in less that 5 minutes you are out .

ohh well I can't wait that this night mare ends , it is very hard to see a person suffering that much , my mom lost the cancer battle many years ago, but my husband situation is different I know he will make it , but it worries me his lack of nutrition.

thank you again John for your long reply and lot of information.

blessings,

Lili 

 

 

 

Liliallen's picture
Liliallen
Posts: 24
Joined: Dec 2012

For all the information,I am trying everything with him , instant breakfast , ensure, I make smoothies with fruits , another with spinach kiwi vainilla protein ( I personally like this one) but nothing work,he takes some one sip,and everything go to the garbage 

For the last 2 weeks if he had 300 kcal  per day is too much , the next 2 days he has the last 2 chemo which are very hard specially being so weak , he will finish radiation January 8 but I didn't know about the cooking process continues for a while .

He starts with 187 pounds and now he is like 148, yes doctor prescribed him that magic wash but doesn't seem to work , the good thing is he didon't loss his voice .

tomorrow we will see  what the doctor says  last week it was hard to reach them with the holidays or they are in a rush if you are no quick with all the questions in less that 5 minutes you are out .

ohh well I can't wait that this night mare ends , it is very hard to see a person suffering that much , my mom lost the cancer battle many years ago, but my husband situation is different I know he will make it , but it worries me his lack of nutrition.

thank you again John for your long reply and lot of information.

blessings,

Lili 

 

 

 

Liliallen's picture
Liliallen
Posts: 24
Joined: Dec 2012

For all the information,I am trying everything with him , instant breakfast , ensure, I make smoothies with fruits , another with spinach kiwi vainilla protein ( I personally like this one) but nothing work,he takes some one sip,and everything go to the garbage 

For the last 2 weeks if he had 300 kcal  per day is too much , the next 2 days he has the last 2 chemo which are very hard specially being so weak , he will finish radiation January 8 but I didn't know about the cooking process continues for a while .

He starts with 187 pounds and now he is like 148, yes doctor prescribed him that magic wash but doesn't seem to work , the good thing is he didon't loss his voice .

tomorrow we will see  what the doctor says  last week it was hard to reach them with the holidays or they are in a rush if you are no quick with all the questions in less that 5 minutes you are out .

ohh well I can't wait that this night mare ends , it is very hard to see a person suffering that much , my mom lost the cancer battle many years ago, but my husband situation is different I know he will make it , but it worries me his lack of nutrition.

thank you again John for your long reply and lot of information.

blessings,

Lili 

 

 

 

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

I'll give my little piece of advice once again. I found that having liquids at body temperature was a little less painful than either warm or cool. I warmed water etc like one would a baby bottle. I put a bottle of water in a pan of water. Actually my wife had to remind me how to warm and test the water temperature.

Now this may or may not be good advice in your case. But possibly it would be worth a try/sip. Who knows? Rick.

jcortney's picture
jcortney
Posts: 416
Joined: Sep 2012

I was having trouble swallowing any liquid cool or cold, when I warmed it up it didn't hurt at all.  You might want to give it a try.

 

Joe Cortney

Dallas, TX

Liliallen's picture
Liliallen
Posts: 24
Joined: Dec 2012

Hopefully it works in my husband too thanks for sharing it, I do really appreciate .

  Blessings,

Lili

Liliallen's picture
Liliallen
Posts: 24
Joined: Dec 2012

Thanks Rick for sharing your tip, evrything helps, I just got egg drop hopefully he will try because it used to be his favorite :)

VanessaSLO's picture
VanessaSLO
Posts: 280
Joined: Jul 2012

My dad also didn't have PEG tube and the last week of radiation and last chemo (Cisplatin) was the worst, because he was dehydrated too. He couldn't eat even soup anymore or drink water. Nothing. So he was admitted to hospital twice. Firstly one week before his tx ended - they kept him on IV fluids for a couple of days. Then he went home and he again couldn't eat or drink almost anything. Only a little bit of soup. My mom was very worried because he was very week and losing his weight very fast. He had 35 rads and 7 chemo treatments. The very last day of his rads he was so happy it was over but the same night he went to ER and was transfered to ONC hospital where they kept him for 3 weeks on IV fluids. Nurses brought him soup and tea everyday but he could barely eat anything by his mouth. So IV fluids were life saving. He felt good at the hospital because he finaly got necessary fluids for his body.

So I know how you and your husband feel right now. All the others above gave you great advice and support, so please stay on this board because here are so many great people! They helped me very much thru our tough times.

My dad is now 3,5 months out. He is able to maintain his weight, but still eats mixed and almost pureed food. He had primary tumour on the base of tongue and multiple lymph nodes involved. The base of tongue was the most radiated so therefore he still has trouble eating. First two weeks after tx were the worst, but with IV fluids he was ok.

Liliallen's picture
Liliallen
Posts: 24
Joined: Dec 2012

Thank you , I am worried too like your mom, he will be done with treatment next week but the next 2 days he has chemo and they are very hard on him , plus now he was not eating for 2 weeks , I try to buy everything that I read here that works for other people but my husband is like your father he is eating nothing , just 2 spoons so at this point I don't know what to do.

We wil see what the doctor says tomorrow

blackswampboy's picture
blackswampboy
Posts: 341
Joined: Jul 2012

at some point it should become like a contract between your husband and his doctors. your doctors will lay out the consequences of not getting enough nutrition/hydration, and your husband will have to buy into the plan. but until he takes that responsibility upon himself, there aren't a whole lot of things you can do. that may be frustrating, but you can't eat for him.

the good news is that when he starts to feel a little better, he'll be able to eat more.

I resisted eating during treatment and lost a quarter of my body weight, but my doctors helped me to understand the seriousness of my situation and I listened to them. my cancer center also had a sweet nutritionist, who acted like the "good cop" to my doctor's "bad cop". between their efforts, I learned the lesson. six months later...my doctors still aren't completely satisfied with my eating and weight, but they still give me good suggestions at every appointment and I try to see what works.

with your doctor's guidance and your good care, he'll turn it around.

cureitall66's picture
cureitall66
Posts: 860
Joined: Aug 2012

I have to agree with what Blackswampboy states here. We dealt with the same issues and ended up getting the PEG midway...something he fought that he wouldn't have.  Once your doctors and nutritionist give you the big lecture on what can happen if this is not taken seriously it gives you a wake up call.  Now that we are done with tx we are working meticulously to gain his swallowing ability back with drinking water and soon soft foods. The swallowing is so important as we've understood that if you lose it, you will not get the ability back. Boost & Ensure are our very best friends right now. They are providing the most needed calories and nutrition.

Be patient, it will come.....but you you still must remind him of the consequences.

 

Tim6003's picture
Tim6003
Posts: 1495
Joined: Nov 2011

I lost 70lbs in treatment Lili...and that was WITH a peg tube. You may have to consider that alternative for him unless he can find a way ...I cooked for another 3-4 weeks....my first full month after rads I lost an additional 15lbs and have managed to not put any back on ...but I am eating good now, limited foods of course.

 

The healing process will only take longer if he does not get the nutrition he needs, so be sure and tell the doctors on him if he is not eating ...even if you don't think so..he will thank you for it later.

Whispered a prayer he does get better soon and that he can take in some nutrition.

Best,

 

Tim

Liliallen's picture
Liliallen
Posts: 24
Joined: Dec 2012

Thanks for your support and prayer I am you Feel better now, I can tell that It is hard , I see that the peg tube didn't help to much at least to keep the weight ,my husband finished already the chemo and he needs 3 radiations more so he is almost there and yes in a lot of pain that It is impossible to swallow but he doesn't want the peg tube.

I was reading about aloe Vera juice to help to heal the burning so I got it today to see if works.

What a beautiful son you have must be the same age of daughter she is 6 she is the only one and very spoiled .

Blessings to you,

  Lili

 

Liliallen's picture
Liliallen
Posts: 24
Joined: Dec 2012

Yes, I know that It is very hard and painful but It iimportant a good nutrition to be as strong and possible he is trying now he is not eating too much but the doctors told him this week that they will have to do the peg tube and he doesn't want .He finished already with chemo yesterday and he needs just 3 radiations more.

I made today an Irish potato soup I added a lot of sour cream butteand whole milk to add some calories he was trying some but the Magic mouthwash is not working.

Have a nice weekend

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