Husband has tonsil cancer

my boyfriend started an aggressive induction chemo the day after Thanksgiving '07 and is now 1/2 through 35 days of radiation with weekly chemo.  he has not worked since the treatment began.  he is a self-employed studio potter which is very physical.  during the induction chemo he was also hospitalized for 8 days due to side effects.  I have known other people who had just radiation and worked until mid-way through treatment.  we are dealing with an unknown primary so he is really getting blasted with radiation.  he is really missing work since it is more than just a job for him...it is his passion.  we are optimistic about gradually returning to work. 

 ~Meesh

 

On 3/28/2008 Julie21 wrote:

My hubbie, a non-smoker, was dx w/ stage 3b hypopharynx w/ lymph node and underwent 2 chemo inductions, 40 rad treatments w/ weekly chemo. He couldn't work at all while in treatment - he also had tonsils removed, wisdom teeth and peg tube prior to the above treatment.

Here's my two cents ...

Here are two website I found very helpful.

http://www.headandneck.org/

http://www.spohnc.org/

Some things we did during treatment -

Metal Fillings: We had his metal fillings removed and replaced with porcelain.  If you have these and you don’t remove them b4 radiation, make sure they put cotton between his mouth and fillings to reduce burns inside the mouth.  

The other thing Charles used was glutamine. My husband took 10 mg  3 x a day during chemo and radiation. It helps protect the salivary glands and mouth tissue from mouth sores. Also, I understand that it helps protect or restore muscle tissue … He took this daily starting with the induction chemo all the through the radiation. It comes in a powder at the health food store - we dissolved it in the formula and put it right in the peg tube.  

Amophostine - Charles had this shot daily before his radiation treatment - this shot is given to further protect saliva glands. I guess this is a bit controversial in some medical communities but we did it. The main complication is nausea, so he took an anti- nausea drug a half hour before treatment and never had an issue with that side effect. Today, his radiologist says that he has more saliva than many of his patients. I would strongly recommend looking into this. Quality of life after treatment is important and the more saliva you have , the better.

Fluoride toothpaste and mouth wash - he used both throughout treatment and uses them daily now. 

Peg tube - His doctors insisted that he have a tube and he still lost 20 pds taking in 2500 cals per day.

Stay ahead of the pain - take pain medication and regular laxatives / softeners -

Swallow daily - my husband couldn't eat anything the last few weeks, but he swallowed water daily.

flem patches - Transderm Scop patches

Hope this helps.

The good news is, while the treatment is super aggressive, the cure rate is good. My husband is one year out - in remission. If you met him on the street you'd never know what he's be through.  His side effects are next to none, with the exception of the emotional and loss of taste.

All my best, Julie

Julie, Rick, Mike, everyone...you are the best and a God send to all of us just starting this process.  Babzilla,  I was where you are a few weeks ago, My husband had a lump, took antibiotics and then it started...surgery, biopsies, lymph node removal. More biopsies. Diagnosis.  His tonsils had already been removed as a child.  He only has one kidney, so cisplatin was not an option.  He was infused with Cetuximab. It took me weeks to remember the name, let alone spell it I was just so busy getting our brains wrapped around it.  He went into it very positive.  Made it through 4 chemo infusions and 19 radiation treatments before it got really ugly.  The first infusion was the superloaded dose, and he had a terrible fever and ended up in the ER and was admitted for a day.  Then we went on our merry way.  He even drove himself to most appointments.  I had some business trips planned that I had to do, so my adult children stepped up and helped out...a lot.  I am now posting this from a hospital room at Huntsman Cancer Institute's hospital in SLC, Utah.   We are confident in his team and treatment.  I had to bring him to the ER early in the week. He was swollen and deydrated. Has thrush and his baseline temp is around 100.3, but now is spiking at night to around 102.  Cetuximab side effects are a terrible acne like breakout -head, neck, back.  But last week his radiation oncologist was really pleased with his progress - his skin looked so bad, the doc was ecstatic.. Haha.  So they stopped Cetuximab early, it's apparently done his job.  Husband won't hear about a PEG, and actually ate an egg salad sandwich for dinner ---on toast---a couple of nights ago.   Ensure and Boost really sting his tongue.  He has not lost his taste, so he doesn't like the miracle mouthwash.  It seems everyone is different, but Julie and the guys are right:  ask, ask, ask and keep trying til you find what works.  Were it not for the thrush, he thinks the throat pain would be tolerable.  Everything stings except he discovered that oatmeal is good,  scrambled eggs and elbow macaroni.  Thanks to Julie, I put L-Glutamine and whey protein in EVERYTHING I cook.  I scramble the eggs with cream and butter, hard boiled eggs, too.  Nothing with salt. and he found out the hard way that tomatoes are like throwing acid on an open burn.  He insisted on trying a tomato, basil & mozzarella sandwich yesterday in the hospital.  Ironically, they have great food here.  He looks at the menu, but.... He has only lost 8 lbs or so.  Started at 176.  He was concerned about other health issues,  but we've all convinced him that the issue is not losing weight.  This is not the C-diet!   Now, as we wait for the "team" to make their rounds, thanks to everyone here, I know to ask them about Ethyol injections and the Trans Derm Scop patches.  My husband is coughing all the time, has lost his voice, though my mom says he now sounds like Clint Eastwood. 

One thing the Phys. Assist. recommended last night was Carrington Oral Wound Rinse.  Bob actually thought it really helped. It's for the radiation burns and mucosa...which will come.

Also, Neil Med nasal rinse.  It has been extremely helpful in keepinghis nose clear.  At night, I wouldn't sleep because he was laboring so hard to breath, I thought he was going to choke.  His surgeon told us about the rinse, and he uses it consistently.

 Thank God again for these boards, and everyone here.  Because as horrible as the treatment is, we know he will get through it.  I think they are sending us home with intravenous saline and oxygen.  The other night he awoke with so much phlegm, and blood and was really swollen on the side of his face getting treatment. And he was totally disoriented. I was really scared & got him to the ER where it turns out his breathing and heart rate were at dangerous levels and he was deydrated.  He must, must must drink lots of fluids. He sweats easily, so they've scheduled him for I V several times a week and when I got her this morning there is some piece of suction equipment he said they will hook up to vacuum out his mouth?  Don't know what that's about, but I will find out.

Babzilla, hang in there , which is more easily said than done, but we can see from Mike and Rick and Julie and others that they can get through it.

Prayers are definitely with you.  Gwen

Gwen, Wishing your hubbie a quick return home :) sounds like you all are inching to the finish line!  It really is true that while the treatment is tough, the intent is to kill all of the cancer and so as bad as it gets you know it's doing the job and you just stay focused on the end result - life, cancer free.

 

One other thing I forgot to mention --- at every chemo I asked the nurses to hook my hubbie up with a couple bags of extra fluids to try and keep him hydrated. I also ordered a hospital grade feeding pump and hooked it up to his peg tube while he was sleeping at a slow rate - it pushed, slowly, four cans of nutrin in while he was sleeping at night and I am sure this is why he finished his treatment w/o any hitches and recovered so quickly. Hydration is key.

Two months after treatment he flew from CA to NYC for a week vacation to visit family.

Sorry for the delay getting back, my notebook's wireless adapter died and I had trouble getting my addresses up to my desktop.

Yes, I missed about 5 months of work, a lot of it because I felt like *poop* and had zero energy. I  stayed out another month because I had a bad case of thrush and could barely eat and lost what little weight I had gained back. I wanted to be sure I was clean ( waited for CT scan and biopsies to confirm)  before I went back as applying for the disability while I was out was a pain and I didnt want to do it over if I wasnt cancer free, or needed further treatment. But I have a physically demanding job, whereas someone who has a desk job may be able to not miss very much if any work. It all depends on how well your husband tolerates his treatment.

Mike

 

On 3/29/2008 Julie21 wrote:

Gwen, Wishing your hubbie a quick return home :) sounds like you all are inching to the finish line!  It really is true that while the treatment is tough, the intent is to kill all of the cancer and so as bad as it gets you know it's doing the job and you just stay focused on the end result - life, cancer free.

 

One other thing I forgot to mention --- at every chemo I asked the nurses to hook my hubbie up with a couple bags of extra fluids to try and keep him hydrated. I also ordered a hospital grade feeding pump and hooked it up to his peg tube while he was sleeping at a slow rate - it pushed, slowly, four cans of nutrin in while he was sleeping at night and I am sure this is why he finished his treatment w/o any hitches and recovered so quickly. Hydration is key.

Two months after treatment he flew from CA to NYC for a week vacation to visit family.

Julie, Thank you so much, You and your husband are two special people and I am so so glad to hear how well he is doing.  You are one strong person.  I showed my husband your post and he said maybe he would get a PEG after all.

 I'm one of those people that everyone thinks is really strong, but I was pretty unhappy this week. It was just a roller coaster.  At least my husband was released today, though they never did really figure out why the higher temps.  They did send him home with oxygen and a new antibiotic, and he'll go for extra fluids several times this week.  We decided that if he stayed any longer in the hospital he'd just starve!   Even the bland food on the menu, except for the oatmeal, stung his tongue from the thrush, but I can make the food with all the important extra stuff - whey protein, L-glutamine, half and half, butter, etc. He just gobbled down a large portion of scrambled egg beaters when we got home.  

He drinks a ton of green tea, which we didn't stop to think has caffeine which causes dehydration, until the really competent nurse today pointed that out.

Also, not to rely on just water, but the gatorade,etc. for the electrolytes.  His tongue doesn't sting as much, so watered down gatorade can go down. 

Great news, though. They gave him an MRI to look for something near his incision. Found nothing. But they did find that the original tumor has shrunk to a much small shadow.  Everyone was really happy about that.

So he sees that people, like your husband,  do indeed get through what is admittedly a miserable course of therapy.  He has just been in a form of denial as to what to really expect, even though everyone was really honest and direct with him.  Thanks again.  So so happy to hear about your husband.

I can't thank you all enough for sharing your stories with me.  It really helps to know you're not alone in this.  Update on our situation:

 We saw the dentist on Friday and although this all has to be 'confirmed' by the radiologist, my husband will have to have 3 cavities filled on his lower jaw, and all of his top teeth have to be pulled.  Then they said it will probably be a while before he can tolerate the denture in his mouth due to the treatments.  He's not really happy, but we went in expecting them to tell us they all have to come out.  So, at least he can keep his lower teeth.  They explained a little more in depth what could happen if we didn't take out what they think need to come out, talk about scary! 

Today I call the surgeon to see when they are going to schedule the PET, so I can tell the oncologist (we meet him for the first time today) when it's going to be done.  Then the dentist is supposed to call me to let me know what she and the radiologist decided, and I have to schedule his dental work.  He wants to get it all taken care of in one appointment.  He will have to heal for 2 weeks before we start any treatment, but I need to call and schedule his fitting for the mask as soon as I know when we are getting the teeth taken care of. 

So many things, pulled in so many directions.  Trying to keep to normal as much as possible for my young son.  Completely overwhelmed today.  I'm sure it will pass and I will get a grip again soon.  But this is so hard already and we have not even started treatment!!!!! 

 

i remember feeling overwhelmed before my boyfriend started treatment...i wasn't sure i would be able to take care of someone going through this.  but once treatment starts there is a routine to it and you just do it.  there have been bumps in the road and i have had a few emotional meltdowns but after a good cry i wipe my tears and be thankful that it will be over soon and we have the future to look forward too.

~m

So we met the oncologist yesterday.  Primary tumor was only .8 centimeters, but agressive as it spread to 15 lymph nodes already.  Still don't know where else it's lurking, we are going to schedule a PET scan next week.  He has about a 80-80% cure rate with radiation and chemo.  Cisplatin IV on radiation weeks 1, 4, and 7.  Takes 6 hours per treatment.  He told us we would get a shot of anti-nausea meds before each treatment, and then pills to take home.  (Never did get that - if you're nauseated, how in the heck are you going to swallow and keep a pill down?!?!?!)  And after all 3 treatments he will get a shot to boost his white blood cell count.  So.  Thursday we get all of his top teeth pulled, and replacement of metal fillings on 3 bottom teeth.  Then on the 10th we follow up with the surgeon, schedule the PET, get fitted for the mask, and get our treatment schedule. 

Thanks again to everyone for all your support and words of wisdom!  This has been a tremendous help!!!!!

This has been very helpful. My youngest brother has just been diagnosed with tonsil cancer. Although I am a Registered Nurse for the past 34years the is a lot I need to learn about this to help him and our family. First on the initial treatment. They have removed all his teeth and he will be getting a PEG. My main question is to the of Surgery. The cancer is stage 4 wrapped around the nerves and Internal Carotid artery. I have spoken to 3 different surgeons I respect and state that the internal carotid artery can be either ligated or bypassed. Also of concern is the effect upon the nerves of his right shoulder and arm. Has anyone had this procedure preformed and what was the outcome. I realize that the risk of a stroke from this procedure is about 10% but is worth that risk, depending after effects My brother is a mechanic and will be at a loss if he is unable to use his hands but at this point he must go forward with the treatment but the decision on having the surgery, or just going with radiation and Chemo must be made by Friday. Even though I have worked with patients and cancers at all levels I have learn about this just like everyone else.

First of all, I'm sorry to hear about your brother's diagnosis.  But there is hope, as MANY people here can tell you. 

Everything went so fast in our situation, we really didn't have a chance to stop and think of all the possible outcomes of the surgery.  We just knew it was bad, and something had to be done soon.  The day after his biopsy, we got our diagnosis.  And we were sent downstairs to discuss things with the radiation oncologist who agreed that sugery as soon as possible would be the best way to go.  Just happened that our surgeon had an opening the next day.  I can't tell you how great our team of doctors are!!!!!  So.  Dave's cancer was also stage 4 wrapped around the nerves and Internal Carotid artery.  It was a lot more involved than we thought.  But our wonderful surgeon was able to do the tonsillectomy and neck dissection and Dave has no nerve damage to his shoulder/arm/hands.  He says he has a very sensative spot just under his ear, but no other major set backs - from the surgery anyway. 

As a nurse, you know that everyone is different and so are their responses to treatment.  But you also know how important it is to have a team of doctors that you trust. 

This is a great place for information, everyone here is just fantastic!  Best of luck to you and your family - especially your dear brother.

Take Care