Hi, In a response to WZ, I mentioned that John has been complaining of a sore throat again, along with painful swelling in the side of the neck, in the area where the modified radical neck dissection was done on Feb.6th. There also seems to be a recurrence of the phlegm proglem he had months ago, although not as severe as it was. He has been going back to his old favorite of chicken noodle soup (with very thin noodles)...and he also says that the food sometimes is getting stuck or caught in his throat. At the time when John had the neck dissection done, the surgeon also performed an Esophageal dilation. Does the fact that he has the sore throat and food sometimes getting caught in his throat sound like an after-effect or problem from the Esophageal dilation? Could it be scar tissue in his throat from the radiation (which ended in Nov. 2002) and from the neck wound healing, etc.? If anyone has any experience with this - please let me know. Thanks. I'm trying not to get too worked up about this, but I'm starting to get a bit panicky!

Donnajean,
I have been diagnosed with an esophageal stricture, which is the direct result of radiation. I have now gone in twice for dilations of my esophagus, and although my swallowing improved significantly following the first procedure, I too get food stuck in my throat and still have difficulty with all but the softest and simplest foods. I did not have a neck dissection. I was told by my doctor that only 5% or patients have esophageal problems from the radiation...but I am one of them. Eating is not easy and it does still cause my throat to hurt a little. I still have my PEG and don't know how soon I will be able to get enough nutrition from eating so that I can dispense with it. I go back for my third dilation in a month.

I hope that this was helpful,
Danny

Donnajean,

I think for every oral cancer survivor, re-learn how to eat/swallow is a must. Swallowing difficulty can be caused by both surgery and radiation. When I mentioned my problem to the radiation onclogist, he said one of his patient actully has to eat from PEG tube for his life because the surgeon has removed most of the muscle that performs the swallowing fuction.
I guess the radiation cannot do such damage.

Since John just had his surgery on Feb 6, the healing process is still ongoing as well as the physical changes in the head and neck region. For me, it has been 6 months since my surgery, there are still a lot physical changes going on.

Thanks Danny and WZ for the info. - it was helpful and appreciated. Along with all that I mentioned that he is experiencing recently - he had a setback today. He was doing his home therapy on a pulley system for his shoulder and arm - then went to lay down for awhile. When he awoke there was blood all over his t-shirt and bedding, etc. I didn't know anything about this when it happened since I was at work - but understandably John was worried sick about what could have happened, so he hastened to the nearest hospital for ER care. We both found out from the examining doctor that it appeared he has a laceration in the scar area of the neck where the stitches (staples) were taken out. The doctor said that people who have undergone chemo and radiation have significant "thinning" in their skin. We didn't know about that, but it makes sense when you think about it. He has to make a follow-up appt. with his regular physican in 10 - 12 days. He also has an appt. on the 25th with his ENT Surgeon to check everything. I am more worried about the sore throat and dysphagia problem he seems to be having lately. I know the surgery wasn't all that long ago - but he was making such progress with eating - but now it's a "chore" to even drink milk without coughing on it. I hope this gets better soon - this is scaring me too much.

My John has been in swallowing therapy since the middle of January. He had radiaion and chemo ending in Sept 2002 and a modified radical neck dissection in October. He still has the tube. His therapist is great but I notice that John chokes more when eating if he is tired. His therapist said he should still be taking an afternoon nap. John has very reduced motion of his epiglottis because of the radiation. HIs tumor was very close to the epiglottis. I think that the problems one encounters are related directly to where the tumor was and its size. John was told by one therapist that he would never eat again. The one he has now is as determined as he is. Good people are the key. If you have not watched your own swallowing study (with the barium) on xray--do so. It will show you where your problems are. Then the therapist designs exercises for the muscles that are stiff from radiation. Our thoughts are with you all.
Meredith

Hi Meredith, My Johnny has never had any swallowing therapy as your John has had. According to the surgeon who performed the neck dissection, he said that eating and swallowing should be OK for him, and quite frankly it was getting a bit better for awhile (he was even chowing on a cheeseburger when he was in the hospital!)....but just from the past few days (probably since Saturday) he has been having trouble with all that I had mentioned previously. He also has been very tired - he slept the whole day away yesterday (except when he had to go to the ER for the laceration). He also said there was a heaviness or a sense of pressure in the upper part of his chest. When he was at the hospital yesterday - the doc on call checked his lungs, and they were clear. He said he feels somewhat better today - but still nowhere as he should be feeling. I really think it has something to do with the swelling in his neck and under the chin, and the lymphatic system finding it's "new way". He decided not to wait the 10 - 12 days for the follow-up as the doctor on call suggested, so he is going to make an appt. for either this Thursday or Friday with his ENT surgeon to take a look. I'll keep you all posted on the latest, and I hope for the all the best for your John as well. I'm glad to hear that his new therapist shows determination with him - the last thing anyone needs is a so-called professional with such poor bed-side manners that doesn't offer any hope. There is ALWAYS hope! So don't let anyone tell you otherwise! Give my best to John and tell him I'm pulling for him!! Good luck.

My husband had his last rad for stage IV tonsil cancer at the end of August and a modified radical neck disection on Oct 9 of this year. He had a checkup with his ENT/surgeon yesterday and stated that he he still had some difficulty swallowing. The doctor said it would be 6-9 months before all of the edema and scar tissue settles down. He eats well inspite of this, except his taste buds are on fire and sweats up a storm while eating.
Good luck to all. LM

elem510, I am six months out from rad and there are some things that still burn my mouth - vinegar being one, so salad dressings are a problem. This is much improved from just a couple of months ago, so your husband is progressing just the way I did. Let him know that in a couple of months, things will be much better.
Joanna

Donnajean,
It seems strange that John's eating became worse after the surgery. The surgeon absolutely blames the radiation for all of his eating problems. Oh well, it doesn't matter who stuck who, it only matters that both these guys are cancer survivors and they will get more and more swallowing capability. Good luck to you two as well.
Meredith

I had radiation followed by neck dissection. Food occasionaly gets stuck in my throat and I have attributed this to the radiation rather than dissection. I find that if I eat very small bites of greasy food with gravy or melted butter things work much better. I also swallow with milk.

Thanks again to all who responded. I was doing some research on the web, and according to some info. I found, sometimes an Esophageal dilation causes a swallowing dysfunction caused by a narrowing of the esophagus. Funny, because I always thought the doctor was "stretching" it. But this is all so confusing to me - so I don't really know. Also, according to an on-line specialist ENT doctor, he believes all this swelling is due moreso from the radiation than from the surgery. Also, this specialist said because of the lack of saliva in the mouth, and thus the thick mucus the body produces from not having as much saliva...one should stay away from drinking coffee and tea regularily, because they will dehydrate a person quick! And if a person has a problem with acid reflux - that needs to be treated because this makes swallowing worse. The acid in the stomach can irritate the throat and esophagus. So I think on my husband's next dr's appt. - he is going to look into getting a "swallowing study" done - because even though I can understand some aspiration after surgery - this is kind of ridiculous in what he has to go through, just to get a little bit of food/liquid down - not even counting the numerous pills he takes every day.

Donnajean,
I am going through some of the same stuff. My chest scan showed aspiration pneumonia. The swallow staff assumed that I have reflux and prescribed nexium. The gastro/ent. who has dialted my esophagus three times disagrees. He says that the chemo/radiation combination that I had changed the shape and function of my epiglotis and my swallowing mechanism in general has been affected by it. This makes the most sense to me, but since the Nexium is apparently harmless, I am taking it anyway.

The dilation worked and food no longer gets stuck in my esophagus, but I still have a difficult time swallowing anything but soft stuff and still deal with mucous in my throat. I can drink a big volume of milk shake, but cannot seem to eat much volume of food. I still use my PEG once or twice a day but probably could drink the Boost Plus and dispense with it. The good news is that I am gaining a little weight. However I never thought that approaching 8 months after radiation ended,I would swallow so poorly and still have a PEG.

But on the bright side, I feel good and am enjoying life. So what if I can't eat a big juicy steak or a wonderful looking brownie. At least I get to hack it around the golf course tomorrow and to attend my daughter's high school graduation at the end of May.

Danny G.

Danny - Yep, it's pretty much the same for my husband - although liquids do go down the wrong way - milkshakes and melted down ice cream are usually no problem. He can also eat solids, as I mentioned - but he gets full VERY FAST, and usually doesn't clean everything on his plate. And it's not like I'm overstuffing his plate with food - but he said that food "is not the pleasure" it once was...and he generally doesn't look forward to eating because of the "gullet" or "2nd throat" or whatever you wish to call it. I call it a pain in the tush - since it really hinders progress in getting adequate nutrition on most days. So I do hear you on this one. Reflux also is a problem, and he does take "Ranitidine" and other prescribed meds for it. Sometimes it helps - other times it doesn't. I found another cool web site called Kasamba.com where they have experts in various fields and even an ENT specialist. For a fee, you can ask questions and get an online answer within a day or two. If you don't mind paying a fee for services (usually around $10 - $20.00) - it's an interesting way to get some answers without having to make a trip to the doc. Just thought I'd pass that along.

Danny, Just thought I'd let you know that John went to see his oral surgeon today, and he also prescribed Nexium (40 mg.) to take once daily, for the acid reflux. Hopefully this will help him. Has it been helping you or have you noticed any difference since you started taking it?