Hello all - I am new to this site but have enjoyed the last hour reading your heroic stories. God Bless you all. My husband just completed 7 weeks of radiation/chemo at Johns Hopkins - part of a clinical trial. He has squamous cell carcinoma in left tonsil and three lymph nodes (stage IV). Will have PET scan on 9/26 so we will breathe better after those results come in. Treatment side effects have been rough - PEG tube has helped with he nutrition but the mucusitis has been the worst causing vomiting and as a result dehydration...but he is now getting all of that behind him and trying to eat. Would like to know if anyone has any suggestions to help with the eating also would like to know how prevalent depression is post treatment. He seems very down and quiet...not very talkative. Have talked to him about depression and he says he's "fine". Also would like to add a note that Hopkins has a study going that relates the HPV virus to the unexplained head and neck cancers (non-smokers/non-drinkers). My husband has tested positive for HPV and will begin another clinical trial with the HPV vaccine.

Hi Marty --

My husband Barry also went through treatment at Johns Hopkins for stage III/IV SCC of the right tonsil, base of tongue and two lymph nodes, this was completed end of September 2005. He was also a non-smoker and was positive for HPV (lots on the OCF web site and also, the forum about this).

Barry is entering the HPV vaccine trial next week, officially -- starting with the phoresis and skin test on Monday.

Feeling down and depressed after treatment is common -- many experience a let-down when they are no longer actively fighting the disease, and of course there is the obvious depressed mood due to the life-changes (and realization of mortality) associated with such a serious illness.

Having said that, your husband was treated at one of the best CCC's in the country and we have found the doctors and nurses there very caring and concerned, so do no be reluctant to raise any issues with your treatment team. Be sure that your husband gets his swallowing/ speech evaluation (this is standard at Hopkins but usually 5-6 weeks after end of treatment to allow things to heal) and that he is religious about doing any swallowing exercises the therapists prscribes. Barry found that these resulted in a rapid improvement in his swallowing -- he had weakened and damaged muscles even though he never used his PEG and ate all the way through (though he lost weight.)

I will send you a private message, your husband may wish to speak to mine and get some encouragment. The month after the end of treatment can be especially rough, the radiation is still working, the mucositis hasn't healed yet, hard to eat etc. However Barry found that things improved quickly therafter and by the first weekend in December he was able to attend (and eat) at one of our club's Christmas party). He had a fused PET/CT scan in December which showed no problems, and another one in March. Lots of physical exams as well. Everything looks good and we are essentially back to a normal life, travelling (Mexico and Australia) etc. He eats nrmally now and has good salivary function (he took amifostine, nasty stuff but it worked)

Tell your husband that it is a long road and a hard road, but it is not an endless one.

Best wishes,
Gail

Hello - my husband completed chemo-radiation treatment last December. Although he is still having trouble eating some things-especially sweets- most foods now taste like they are supposed to and go down without too much trouble.

Immediately post-treatment John was very grouchy and then distant and depressed. I was a bit surprised at first because I was so relieved the daily trips to the hospital were finished and also because he had pretty much kept his spirits up during even during the darkest days. However, while he got a bit better the first 2 weeks after treatment, he then declined again - soreness, mucous, coughing, fatigue for about another month.

It was tough and I think his bad mood/depression was from thinking that somehow things would be instantly okay post treatment, even though the doctors had all warned him that it doesn't really work that way.

To start eating again - after relying on the tube for about 6 weeks, he began with blender drinks ( high calorie Nutren 2.0 - 500 cals/250 mls, whipping cream, 1 egg and 1 banana). Some people might not like the raw egg but he grew up in rural Australia and likes them and trusts that they are safe to eat that way. We always buy free-range organic ones.

He started with 2 of those drinks a day and once he was able to get down 4 a day, he started gaining weight. At the same time we kept pureeing various foods - e.g. chicken stew, sweet potatoes, peas to see what tasted okay and what he could swallow. If you go this route, be prepared to throw out lots of food either because the effort to eat seems too great or the taste is off-putting.

After a couple of weeks of pureed dinners, he graduated to minced food that we bought from a speciality food supplier. The more he ate and swallowed, the better the eating got.

We, too, have been able to make a few long trips including to Australia and made one about 2 months post-treatment in February from Toronto to Florida so my Aussie could enjoy some sun and warmth. It made a huge positive difference. Although the 3 hour flight wore him out quite a bit, it was worth it.

Everyone is so different in how they react to the post treatment phase but in my husband's experience the heavy depression lifted after the trip south.

Mary

Hi Marty,

My husband finished his radiation in May and had many of the issues you're describing. He actually felt worse once the treatment ended and that kept up for the first 2 months. He started eating scrambled eggs with cream cheese, pureed dinty moore beef stew, and cream of wheat with maple syrup. Soups and custards are good.

Like Mary we ended up throwing lots of pureed food out because it just didn't work for him. Some were too thick and some were too thin. I felt like Goldylocks looking for just the right thing for him. We make high calorie shakes by mixing protein powder, ice cream and syrup into carnation instant breakfast and his neutron 1.5 canned formula because he could drink those easily, even when he couldn't taste them.

Salty taste came back first for Jack, sweets about 3 months post treatment - but that's very individual. His swallowing has gotten progressively better and the PEG tube was removed in August. At this point he still has dry mouth, but it's too early to know what the status of that will be, and he's learning to work around it. He went from puree to minced to chopped pretty quickly in retrospect although it didn't seem like it at the time. We have a new phrase - he's "repositioning" his food, which sounds so much nicer than hacking it up.

We also sent our slides to Johns Hopkins and are waiting to hear the results of the HPV 16 virus as Jack was another non smoker, non drinker. If he is positive I would like to see if he is a candidate for that clinical trial.

He was somewhat depressed and quiet right after treatment but had a turning point moment where he came out of that about 6 weeks post treatment. He too always told me he was fine and didn't need medication - but I watched it closely to see what direction he was going in. It strikes me as a little nuts to not be to be depressed after treatment ends. There's such a sense of "now what?" and waiting for the other shoe to drop.

We did a day trip - around 4 hours away - to go to a family party and that made a big difference in Jack's mood. We planned the trip to bring all the tube feedings and extra supplies/meds in case we wanted to stay overnight and he had a great time. He even found a couple of things he could eat at the BBQ because he was supported by people who didn't care if he spit it out. At that point he was still on pain meds but he really needed that connection to life goes on.

Sounds like we should get all our husbands together to trade notes and the 4 of us should go do something fun. I'll bet a few more forum members would probably join us.

Consider this a virtual lunch invitation. We'll be with each other in spirit.

Regards JoAnne

Please excuse my ignorance, but my wife Sherrie just finished her radiation treatments last Thursday September 21, 2006 at the Huntsman Cancer Research Institute in Salt Lake City.

My wife also was a non-smoker/non-drinker that developed squamouscell on her left tonsil. The cancer migrated only to a (thankfully) single lymph node in the left side of her neck. She had absolutely no symptoms until the lump showed up in the side of her neck.

What is HPV?

It is disappointing to read how long the recoveries have taken after the end of treatments... I too was full of wishful thinking that she would start to get better immediately.

Dear Sherrie's Husband,

HPV is Human Papilloma Virus. There are many strains of this virus, two of which have been connected to oral cancer. HPV is most widely known as a cause for cervical cancer.

Three suggestions:

1. You should start your own thread in "Introduce yourself". Your post may get lost in here under someone else's posting.

2. You should use the search engine at the top of this page, found under "POST REPLY" and type in HPV. You will find a great deal of information here as this is a topic that is discussed quite a bit.

3. There is a search link at the bottom of the home page which will also get you a tremendous amount of information.

I'm sure you will hear from Gail Mac as she is our resident expert on HPV.

Please don't hesitate to ask any questions that you think of. We have all come here with very little knowledge and have all learned so much from those that have travelled this road before us.

Jerry