Hi,
My name is Bobbie and I am a 62 year old female who found out about my cancer in April. I had swollen lymph node on the right side of my neck. I went to the ENT and he sent me for a needle biopsy which came back positive but they weren't sure where the primary was. I was then sent to the hospital to look down the throat better and perform a biopsy. They did a biopsy of the right tonsil and found cancer. This ENT thought that I should just have radiation. I then visited with another ENT and he suggested surgery then radiation and perhaps chemo.

I had the surgery on May 25, 2003. They removed 26 lymph nodes and the tonsil. They found the cancer in 2 nodes the largest being 5.7 cm. the cancer of the tonsil was near the margin so they suggested chemo and radiation. They also suggested a peg tube and port which I had done.

I started the treatments july 1, 2003. I had 39 radiation and 7 chemo. My last treatment was Sept. 2, 2003. About half way through I was so burned on the outside of my neck they had to stop treatment for a week so I could rest and heal some.

It's been 9 weeks and I am still not able to eat anything more than baby cereal and some soups as my throat is so sore. I still don't have much taste and my mucos problem is still pretty severe. How much longer is all this going to last? I have heard the mucos problem could last for sometime perhaps months??? When can I expect some taste to come back???

Does anyone know of a support group in the Ft Worth area? Preferably in the HEB or Grapevine area?

Thanks for your help.

Hi Bobbie, I my case is similar to yours, except
they never found the primary cancer site.
I could start to swallow food at 8 weeks post
radiation, and the taste went from horrible to no
taste at all. I had the PEG removed then, but
should have left it in a bit longer. I could
eat Cherrios and soup, but it took awhile.
The mucousitis started to go away by then, but
was still a problem for about 6 months.
Once the mucous went away, the dry mouth set in.
Now I carry a water bottle everywhere, instead of
a box of Kleenex.
As for taste, at about 4 months I could start
to taste again, but it would go away after a
few bites. Little by little, that got better.
Now I can taste everything, even though it's
a little weak. I can't eat fruits (taste bad),
but I can eat spicy food. This thing seems to
affect people differently. I went to one of
those buffet restaurants and tried a little of everything.
Then I loaded up on stuff that tasted good to me.

I don't know of any support groups in your area,
but hopefully somebody on the board will be
able to help. Don't dwell on the side effects,
just look for ways around them. Hope you recover
soon...O-O

Dear Powerlifter, Thanks for the info. I have found that I have the dry mouth now and that is the reason I can't seem to eat anything. I have tried several differant things and if they aren't real soupy I can't swallow them because of the lack of siliva. They all seem to just get bigger as I chew!!! I am taking salagen but that hasn't seemed to take effect yet.

I think today that my mucos is much better than it has been. I rinse with salt and soda water several several (in other words many) times a day and I also carry a roll of paper towels were ever I go.

I love fruit so I hope that I will be able to eat it.

Thanks again

Bobbie,
We all heal differently and your treatment ended fairly recently. I kept my PEG tube for 9 months after my radiation treatments ended. My ability to swallow returned slowly, more slowly than most. However one day I had lunch with a fellow who I met here, who finished treatment much later than I, and he was eating all kinds of stuff while I was eating mostly soup. Salty things taste good to me, as do some sweets like a good mousse, but other things that I used to love just don't turn me on anymore, like Cokes or coffee. Also I find that I don't really miss the stuff that I cannot eat, like popcorn or chocolate chip cookies. Since I know that I cannot eat it , it just does not appeal.

Keep up the good work, things do get better.

Danny G.

Hi again,
I have another question for anyone out there. I still seem to have such a very sore throat. Sometimes it feels as if kniefs are cutting me all the way down. I even seem to get things caught in there like small pieces of chicken from soup or small salagen pills. Should I worry about scar tissue or is this just part of it?? It is on the right side of my neck where the cancer is or was I hope. I want to eat so very bad but am afraid I will choke on something because of this.

Thanks again
Bobbie

Bobbie,

Hello and welcome to this wonderful club that none of wanted to join, but we're so glad it's here.

As far as the swallowing goes that too is different for everybody. I am 18 months out from radiation and still got some vitamins caught in my throat last week. Some days are better than others. Really you aren't that far out from radiation. We all heal differently and it's been said that it takes a month for every week of radiation. So maybe it's just too soon for you. Don't push it, do what you can and take the rest easy.

There are some on this board (digtexas) that had help due to swallowing problems, but that was further out from radiation when they knew it was a problem not a normal side effect.

There is a Support For People With Head & Neck Cancer Group on the internet. I believe they have a support group inb Dallas. If I find more information I'll let you know.

Take care,
Dinah

Hi Bobbie,
I am 4 months out from radiation and it sounds like you are following about the same path as I did where healing is concerned. At 2 months I could suffer through a bowl of soup, but depended on my tube for my nutrition. I choked on everything I tried to eat and couldn't taste it anyway. At 4 months out it is a WORLD of difference! I eat basically anything I want to, as 90% of my saliva is back and my taste buds are full steam ahead (expect for chocolate, which tastes horrible). I choke now and again, and some things still sting my mouth at times, but eating is enjoyable to me again. I just finished a quarter pounder meal from McDonalds while reading my emails, and am munching on a bowl of Special K cereal as I type this. Be patient and it will get better.
Minnie

Minnie.........IT's been over six years for me and I still don't think I could eat a quarter pounder from Mc Donalds without a lot of effort. Not only that but, it would be a benifit to those sitting with me, or around me, if I were in the comforts of my own home while trying to gobble that Quarter Pounder down. It could get ugly. <grin> Yeah, I can eat almost anything I want, it's just somethings are easier than others. Additionally, at over six years out from a tongue cancer diagnoses/treatment I STILL choke on food, pills......whatever. The only thing that goes down with the greatest of ease is good ole Haugen Daaz ice cream. YUM!

Winter is especially hard on my oral cavity. Dry winter air is not fun -- not fun at all. I suffer with more mouth sores and just a sore mouth in general. Swallowing becomes more difficult and I eat a lot of soup and ice cream. I drink enormous amounts of water and am not ever far from a bathroom. I seem to be up half the night either drinking water, or in the bathroom letting go of water. Its a no win situation. Salagen never worked for me so I just drink drink drink and drink somemore.

Still, I have a wonderful life. Full of good things. I can STILL taste food and still enjoy a good meal even if it does take me an hour to eat it sometimes. I have a life full of laughter, good friends, and a great marriage. I can still speak and am clearly understandable. I even went back to work after a seven year absence....and it feels pretty good.

I had my PEG tube in for a bit over a year or until I was pretty sure I could sustain myself on regular food. It all takes time. Somedays better than others. Pretty soon you'll have an idea on what foods work for you and which foods don't. Which foods to order in a restaurant and which foods are better left to enjoy in the comforts of home with a bib on. Yeah, I still wear a bib sometimes. (i actually admitted that??) And like Danny says, foods that are just too difficult or foods you just simply cannot eat loose something and you don't crave them or enjoy them so much anymore.

I think for me, swallowing and food will always be somewhat of an issue. Eating just isn't the same as it once was. Not bad, just different. But trust me, if I want something bad enough I have it. I may make a tiny mess eating it, but in the comforts of my own home -- Who cares?

Sincerely,
Donna

HI Again,

Thanks everyone for the good info. I guess I am pushing it. I did tell the Doc who put my tube in just Monday that I was really mad at all the Docs because I really don't think anyone prepared me for all this. Everyday i seem to get a little better and something new happens.

Someone told me the other day to take Nyquil for the mucos and that seems to help at night. Nothing really helps in the day time and it seems to be worse in the afternoon.

Minnie, how to you stand not being able to eat chocolate?? I already have a big box of Harry and David choc waiting for when i get my taste back. I really think it won't taste good tho because I tried an M&M the other day and it was awful. It seems anything creamy or cheesy tastes bad.

I called American Cancer Society this morning to check on support groups and they don't have any in the area just for head and neck. I will try a couple they gave me and see how that goes.

Thanks again to everyone out there who has been such a lot of help. God Bless you all

Donna - I hear you loud and clear...I actually couldn't stand not having a hamburger for over a year. Took the top off and ate it with a knife and fork. Got the flavor I wanted and was a happy camper. (water helped)
Lost my chocolate and other things like most everyone else, but Danny is right...you find you don't miss it. (I can always find something for this sweet tooth!!!) I think one of the somethings is Vanilla Bean!!!!

Good luck Bobbie, it will come. Be patient.

Take care,
Dinah