Radiation And Chemo For Tonsil Cancer

Hi Everyone...

I'm new to this board.  This is my first posting.  My husband found out on Nov.6 that he has early stage 3 tonsil cancer in the right tonsil (T3N1M0).  He's a non-smoker, non-drinker, and 47 years old..and in perfect health other than the cancer....so we're still in shock at this point.  After talking to many people and doctors we chose Univ. of Miami Sylvester because we've been told they deal with many head and neck cancers.  It's taken us a couple weeks to get the appointment but yesterday we met with the radiation oncologist from Sylvester for the first time.  Even with the cancer appearing on only the right tonsil side, they suggest using radiation on both the right and left just to make sure the cancer had not spread to the left side.  Is this something that is normally done?  They also want my husband to take low, once a week doses of chemo (cisplatin along with 2 other drugs) and they suggest no PEG tube because of the chances of infection and so that he continues to swallow.  My husband fears the chemo because he's read about chemo brain (and chemo fog) and he is the only one that financially supports our family (I'm a stay-at-home mom with a 6yr. old girl and 3 yr.old boy) so right now he's trying to decide what is best for him and the family.  They don't plan on any surgery unless they don't catch all the cancer with the radiation and chemo.  We could really use some good advice on this.  We know the clock is ticking and we need to make decisions quickly.  Thanks for your help. ...Amy

Amy,

Your husbands and I have the same diagnosis, with mine on the left side.  I too made it without a feeding tube.  We are rare, and it is a bit more difficult, however the recovery is quicker.  I also was a non-smoker and only a social drinker, and in very good shape.  That all works to our benefit in the treatment.  My radiation was 3D and on one side only.  I was told that is determined by the location on the tonsil.  If it is located closer to the other side it can jump.  My radiation was 37 days and I had 3 rounds of cisplatin.  I was hospitalized overnight to stay properly hydrated.  I had a modified neck disection post therapy.  You may want to look further into that.  It was a tough regimen but obviously you do come out the other side.  My friends and family were by my side at all times and that made it bearable.  If you would like to talk further, you can contact me thru www.spohnc.org.  I am a voulnteer and my wife would also be happy to discuss it from a caretakers perspective.  Your husband will have a very good prognosis and come out of it a beaten-up but changed person.  It will be an amazing journey that you both will survive.

Best Regards,

Rob Jaffe

Hi There,

I read your message and wanted to reply as my dad has just gone through the entire proceedure and we have learned so much.

Background:  My dad never smoked nor drank.  Hewas diagnosed with left side tonsil and into 1 lumph node. 

Course of treatment: 6 weeks of radiation to both sides as well as the 1x/week chemo treatment.  This was followed by partial neck disection which removed all the lymph nodes from the left side as well as the salivary gland.

Opinions:  We recieved one opinion form Yale New HAven Hospital and one for Beth Isreal hopsital in NYC.  Both are reknowned for their head and neck cancer centers.  Both recommeded the same treamtent which my dad just completed. 

Feeding Tube:  Althoguh I have read of people making it without the feeding tube I beleive thsi would be VERY DIFFICULT.  The radiation your husband will recieve is very high powered. Swollowing will become VERY difficult.  Perhaps if your husband was goign to rest all day for the next 6 weeks he may be able to survive without the tube.  My dad wanted to get upa nd go to work and try not to loss as too much weight.  In week 3 he got the tube and I beleive it gave him a much faster recovery becasue he hardly lost any weight he had strength to work from.  He did keep eating as much as he could but at night while sleeping we hooked him up to a feeding pump and feed him through the night and gave him water that way too.  I can tell you what to get for that if you need it.  Waiting until he is sick and into 4 weeks of treatment and weak to get a tube is a mistake.Having a tube does not mean you stop eating but it provides a way to get nutrition and fluids into you when your throat becomes too sore to swollow nutritious food.

Surgery:  Squamous cell carcinaoma which is what it is called is tricky.  Squamous cells are incidious. It is my opinion from our research that having a partial neck discetion(which is the removal of lymph nodes on one side of the neck) prevents the cells from spreading to the lymph node system.  Both experts recommended it and we had it done.  Most of the people we spoke with through the support groups also had it done.

IF you need any further help please fell free to email me directly.  Best wishes  Andree 

Hi,

I, too, have just been diagnosed with tonsil cancer, and have pretty much gone through the same procedures you  have.

But I would take issue with one thing: To radiate both sides to ensure they get all the cancer doesn't seem adviseable. At the very outset, I had a CT scan which showed the exact location of the cancerous cells. They were all on the right. A bit later, when my treatment was being planned, I had a PET scan, which is designed to find out if the cancer has metastesized to other places. It had not.

To radiate where it is unnecessary, it seems to this layman, puts healthy cells at risk,  not the least of which is the salivary gland on that side. We'll probably lose the salivary gland on the right side, but try to save the other one.

I hope this is helpful. Best of luck to you all. I  hope we can chat again.

Dear Amy,

 I was diagnosed with Squamous Cell Carcinoma of the right tonsil on July 31, 2006.  Like your husband, I don't smoke or drink and exercise regularly, so it was a shock to me as well.  Fortunately, I have wonderful doctors who immediately jumped on the treatment.  My cancer was a stage 3 and primarily contained in the right tonsil.  I went through seven weeks of chemotherapy and radiation therapy.  I had chemotherapy every Monday and Tuesday.  Monday I was given Taxol and Tuesday I was given Cisplatin.  I had twenty minutes of radiation therapy Monday through Friday. I strongly recommend that your husband have a PEG tube put in.  My doctors insisted that I get one and it has been my life saver through all of this.  The radiation burned my mouth and throat so badly that there was no way I could eat or drink anything!  I actually had 3rd degree burns on my neck in which my skin started peeling off and bleeding.  They had to stop treatments for 10 days until my skin healed. If I hadn't had the PEG tube I would have wasted away to nothing.  I only lost 16 lbs during the treatments.  I met several people who didn't have a PEG tube and they lost 30 or more lbs.  This is the most difficult thing I have ever been through in my life!  The best way to describe it is hell on earth.  I hate to be so blunt, but sugar coating it won't do you or your husband any good. I finished my last chemo and radiation treatments on Oct. 16, 2006.  I was on some pretty heavy duty painkillers throughout the treatments and afterwards in which I had to gradually ween myself off of once I could tolerate the pain without them.  From Oct. 16th to Nov. 20th I continued to be on the painkillers.  I had canker sores all over my mouth, tongue, and throat from the radiation.  Here it is, Dec. 28th, and I still have sores in my mouth and throat. Not as many, but there are enough there that it makes eating by mouth very painful. I started eating a very small amount of food by mouth around Thanksgiving and have increased my eating to two or three small meals a day of soft foods. The treatments caused me to lose my taste buds and salivary glands.  According to my doctors, they will gradually come back.  My taste buds have come back very little.  I can taste a hint of certain things.  My salivary glands are still not working.  That is the most horrible thing to me.  You don't realize how important your salivary glands are until you don't have any functioning.  To eat a sandwich, it takes 3 full bottles of water to get it down. Sleeping at night is very difficult.  I wake up every 30 minutes needing water.  I found out after the fact that there is a medication they can give you to help save your salivary glands.  The draw back to it is it makes you extremely nauseous.  The chemo did the same thing to me, so I'm not sure why it wasn't offered to me.  Anyway, I pray every day that my salivary glands and taste buds will come back.  I will tell you though, I went in on Nov. 14th for a CT Scan and Nov. 28th for an endoscopy and my doctor saw no signs of the cancer!! Thank God!!!  So, you and your husband are in for a long battle, but it CAN BE WON!!!  If your husband has a strong faith and a positive attitude, he can make it through this.  I am still recuperating, but am hoping to be able to go back to work at the end of January if all goes well.  I still have the PEG tube in me even though I'm eating small amounts of food.  At first I was upset that my doctor wouldn't take it out, but realize now that I still need it to get the additional nutrition I need to heal.  I hate having it in me and it's uncomfortable at times but a necessity to recovery, I think.  My doctor will not sign off for it to be removed until I have gained 10lbs., can eat, drink, and take pills my mouth, and have maintained my weight. The chemo and radiation will make your husband very nauseous and very tired.  I couldn't even get out of bed I was so weak.  It took everything I had somedays to go to the treatments. I learned more from the nurses and other patients than I did from some of my doctors as far as things to help with the side effects of the treatments.  One of the worse side effects was the thick mucous that was in my mouth during the treatments. I requested a portable aspirator to assist with sucking all of that out of my mouth.  I had to sleep sitting straight up to prevent myself from gagging on the mucous.  I would wake up every 20 or 30 minutes to suck the mucous out with the aspirator. I found that if I used liquid benedryl it helped dry it up some so I could sleep.  My dentist gave me some of those round tubular shaped gauze that he uses on patients to put in the back corners of my mouth to help absorbed some of the mucous.  They helped a lot when I was awake during the day.  Your  husband will need to have his teeth checked by his dentist before he starts treatments.  If there are any teeth that are in bad shape, they will have to pull them before treatments can start.  Fortunately,  my teeth were in great shape and I didn't have to do that. During treatments, he will need to rinse his mouth out throughout the day with a bakings soda and salt mixture. You can get the measurements online on all the cancer sites.  This mixture helped with the healing of the mouth sores and keeping the teeth clean.  I am sure I have forgotten a lot to tell you, but feel free to email me if you have any questions.

 Keep the faith and stay strong!!

God Bless,

Lou

Hi Everybody...thanks for writing...

Well, here's the update.  We have switched hospitals one last time.  We switched to a place that has a good cancer team, close to home, and they have a IMRT/ IGRT (Trilogy)  machine, which means they can pinpoint the cancer with a daily scan of the tumor.  They handle over 100 head and neck cancers per year and with the new machine there's a good chance we can save his saliva!  He's had all his dental work.  No teeth pulled and they say his teeth look great. He has his trays and mouth wash.  They have scheduled to start the chemo/radiation on Jan.4 and last treatment will be about Feb.15.  This hospital says "yes" to the PEG tube (and that's fine with us), and he will be doing the three treatments of chemo instead of once a week.  I'm not sure which is more effective. 

 He's doing everything he can to prep for what is ahead.  We're trying to put some weight on him but he went from 178 to 168 when we got the bad news...now he's up to 171  (and that's about 10-15lb.s overweight for him).  He's been drinking Boost plus, but he says it fills him up to the point he no longer wants to eat.  He's been taking vitamins, drinking green tea, and doing push ups in the morning.  He even bought special lotion for his neck.  We are both still very worried about the treatment.  This hospital also agrees with giving radiation to both sides of the neck.  I had thought the chemo was there to kill off any other cancer cells they coundn't see.  It's something we'll need to talk to them about.

 My husband's main concern right now isn't even himself, it's our kids.  He's worried about the effect this is going to have on them.  They're both very little and he doesn't think they'll understand the changes daddy will be going through.  It's very difficult as a little kid to watch a parent deal with cancer.  It's something I went through as a child so I know how hard it can be. 

The doctors all say his chances for being cured are very good.  I don't know how long the recovery will take, everyone seems to have a different story.  Please keep the good advice coming.

Thanks...Amy

Hi,

I too was diagnosed with tonsil cancer(left side) that had metasticized to one lymph node.  I am 45, nonsmoker, light drinker, and a regular exerciser.  I had absolutely no symptoms and would not have known anything was amiss if a cyst had not grown around the lymphnode on my neck.  When biopsied, cancer was discovered.  I finished 40 radiations (to both sides) and 3 rounds of chemo on september 1, 2006.  I had a PEG tube placed before I started my tratment and it turned out to be a life saver.  I had it removed just last week and feel great!  My advice to you is to continue swallowing water throughout your tratment as it will keep your swallowing mechanism in working order.  When I went in to have a barrium swallow test they were amazed how well I did.  In fact, they said if they hadn't been told I had tonsil cancer they would never have known for themselves.  It has been almost 4 months since I finished treatment and I feel like my old self again.  Accept help from others, rest as much as you can, and don't beat yourself up when you have a bad day.  Give in to it and know tommorrow will be better. It truly is a rollercoaster ride, so buckle up!  Queenie45

I know just what you mean when you say you would never know there was a tumor there.  My husband had a nose infection and he went to his doctor to see what he could do about it.  The doc looked him over and said my husband was in great shape, but when the doc looked down my husband's throat with the little flashlight, the doc said "uh oh, the tonsil is swollen on the right side only, you need to go to see an ENT and get this looked at, this could be bad."....and there was no pain, no trouble swallowing, no ear ache...you couldn't tell looking at his neck.  And when the ENT checked him out, the ENT felt my husband's neck and said he couldn't feel anything, and that the tonsil was swollen, but didn't look bad.  They gave him a biopsy anyway, and it's a good thing they did.  When my husband sits in his chair to watch t.v. I sit on the sofa to the right of him, with full view of the right side of his neck.  I've been looking at his neck for months and you still wouldn't notice it.

Hi Amynmiami.  I have just been through what your husband is facing.  My cancer was in the left tonsil, I'm ten years older and I live in Australia, otherwise it appears our situations are very similar.

 I am 3 weeks out of treatment (which was 1 week of inpatient chemo and 35 radiation treatments to both sides).  In short, the treatment was nowhere near as traumatic as I was warned it might be. 

Yes, I did get a very sore throat from week 4 of treatment, but that was managed reasonably well with, firstly, panadeine and, during the worst 3 weeks, morphine.  I got a sore neck - much the same as severe sunburn.  Again, it was well managed with creams.  I had nausea for the first week of treatment, but a short dose of medication got rid of that.  One thing that was a problem and that medication didn't manage very well was having a weird taste in my mouth for most of the time.  I found dry mouth gels and dry mouth toothpastes helped a bit, but it was the foul taste that has been the worst part of the treatment.

One thing I did not anticipate was the extereme tiredness that set in from about week 3 of radiation.  On the positive side, it did mean I slept well throughout the treatment, which was a major blessing.  But, being normally fit and active, I found it frustrating to have no energy and not be able to do stuff. 

 I am very thankful that I had a PEG installed before the treatment.  There were several weeks when I didn't feel at all like eating - much more to do with the foul taste and mouth dryness than any throat pain.  Having the PEG meant that I could feed myself with having to be "force fed"!!  I maintained weight pretty well throughout, and that helps with recovery.

Now I am 3 weeks out of treatment, I am amazed at how things have improved.  I can feel things getting better every day.  I'm back at work and functioning fairly normally.  Still lacking energy, but I can feel the zip returning bit by bit.  The only problem I have is that the medication doesn't seem to help much with thrush in the throat and a mouth ulcer.  So the throat area is still fairly uncomfortable.  I guess that'll improve as my immune system recovers from the hammering of the 35 radiation hits!!  In the meantime, panadol soluble 4 times a day is a help.

The staff at the clinic have been absolutely fabulous, and that has helped greatly.  But the biggest help has been my wife.  It's been a tough journey for her as well.  She has gone through the various medical traumas with me, plus she has done all the housework since about week 4 of the treatment, kept the farm ticking over and done her normal day job as well.  Your experience during your husband's treatment might be somewhat similar.  I guess what I'm saying is that if your husband goes through the treatment with the same amount of good fortune as I have, then it'll actually be tougher on you!!

Good luck for the journey you are both going through.