Hi My name is Christy, I am 29 and a caregiver to my dad, who had squamous cell cancer, primary in his nasal pharaynx but never found until a tumor formed inside his neck...the doctors have never said what stage, but from the medical reports I suspect he was about a stage 3. He had 8 chemo treatments and 35 radation treatments simotaniously. The treatments were last May-July, so it has been over 1 year since the last treatment. Then last September he had a radical neck dissection with only 1 lymph node being positive, and that was the lymph node that the tumor was in. It has been 1 year since that surgery and so far all the scans have been clean and cancer free. The problem he has is eating/swallowing by mouth. He had a PEG tube put in back when he first started radiation (over 1 yr ago) and has been using it since the end of radiation treatments when his secretions got to thick & his throat got to sore. He has been completely dependent on it for over 1 year, probably since last July and still cannot swallow anything. We have tried Vital Stim therapy, which helped him with gaining control of his muscles in the throat area but never opened up the esophagus. We have done numerous cookie swallows, and they have determined that he has about a 2cm stricture in his esophagus that seems to be his main problem. He has had his throat stretched 5 times, and 2 of those times it didn't even work because his esophagus was so tight that they couldn't even get the dilators down. Now they are talking about dilating through the PEG tube weekly, and my dad is not sure its a good idea. On top of that, the last time we went to the chemo dr for a check up he looked at scans and said that a few spots in the bottom right side of his lung looked a little different. He (the dr)seems confident that it is aspiration due to his non swallowing but we have to go back this friday to have another scan done so he can check to make sure. Oh and did I mention that my dad is only 59 1/2 yrs old and was never sick before this? So anyone who can remotely help or offer advice is very welcome to respond back. I know that he couldn't have made it this far only to be defeated but I feel like sometimes it is up to the patient/caregiver to seek out answers....after all, drs don't know everything! Thanks and I look forward to your response. You are welcome to respond to this post or email me directly at [email protected]

Hi Christy,

I may be in a similar situation. I have had very similar treatment which ended in May. I am still not eating solids as anything solid gets stuck in my throat. I can drink tea and soup however and I have been advised to gradually increase consistency of foods tried (ie by putting breadcrumbs in soup initially). I have been told by oncologist that throat dilation does not always work and can make the problem worse. Not being able to eat and having to still use the PEG is quite depressing but I try not to think about it. If this is the price I have to pay to stay alive then so be it.

I am what is known as a silent aspirator. At 16 months out I have (1) no saliva, and (2) unable to drink liquids.
I can eat a few foods with the aid of apple sauce. Meats are out. But we are lucky to be on the planet.

the mucus is a problem with my friend five weeks out of radiation....does it ever get better..hes still on the peg

To all, this is the same post I made to DSM,

I let me give you my experience. I had a radical neck disection and 33 rad treatments. I had and still have trouble swollowing but it is getting better. My rad treatments ended feb of 04. During last summer I could not swallow. I had a total of 9 dilatations. I do not know what kind Tim is getting. My were through the mouth. I had a stricture as well. My oncologist eventually sent me to hyperberic treatments. This is where the patient breaths o2 under pressure. I went 6 days a week for 29 treatments. My stricture did go away. I still had difficulty swallowing. I went to another specialist in NY and he did what is called a FEEST test (Fiberoptic Endoscopic Evaluation of Swallow Test). Better then the normal swallowing study. He can see on a monitor in color how the throat works during swallowing. For me, my throat on one side was not 'squeezing' at all. He told me the only thing that may help is me doing exercises. The exercise he recommended is the shaker. I was on the peg from oct 03 to feb 05. I started the shaker in dec 04. Until that time, I could only swallow thin liquids. Within 3 months, I could get all my nutrition via liquid and had the peg removed. Within another few months, I could start to swallow more types of food, although to this day I must swallow water to get anything down, but it's better than the peg. I did the exercise 3 times a day. I still do those exercises. I hope this helps and wish you well. You can find more info on the Shaker and FEEST exercise if you google it.
I really hope it helps. I know you may have had the same experience with me as doctors say, 'it takes time'. It may be true, but it's not what we want to hear. I hope you all do well.

Jeff

hi everyone. just wanted to give a quick update on my dad. since my last posting we have gone back to the ent surgeon and the oncologist and have gotten "official" 1 year cancer free reports from both...and no doctors appts for 3 months & 6 months respectively! See there is a light at the end of all this madness! However, the swallowing continues to be an issue....the weekly dilatations I spoke of in my earlier post did not pan out...the stricture was to "hardened" to get the wire in to perform the dilatation. So, we are back to square one but with renewed hope, thanks to member JEFF , who had some great advice and ideas. We now have an appt with a gastreonologist next week , who actually specializes in throat strictures and and esophagial disorders. Who knew? and most "gi" doctors all specialize in this, so its a great thing to look in to. I will try to update as soon as i find out more info and appreciate any comments/questions/suggestions anyone may have. its nice to know that we aren't alon in all this!
blessings- christy

Christy, My husband had a swallowing test and was told that he had a complete stricture, too. The ENT wanted to dilate through the PEG. But we decided to check with a GI doc and guess what? He opened him up without any problem at all! First with a pediatric wire and today with a regular dilation. The GI doc said they are very rarely unable to open an esophagus. Good luck!
Sheila

Did they have these issues right after treatment or did they creep up? My dad has been swallowing and eating normal 3 weeks post treatment-so my question is whether this issue is going to creep up on him?

Our ENT and also, our dental oncologist, said that if you are swallowing through treatment or right afterwards, you are *probably* not going to have any problems. However, Hopkins still schedules all their HNC radiation patients for a swallowing evaluation, which for Barry will be November 8. He is swallowing quite well now, but mostly softish things -- throat still sore which is the major issue. He had quiche and pumpkin pie last night with no issues.

The advice from ENT was "keep swallowing!!"

Gail

I think thata dvice is good. However, I had been under the impression that ANY kind of swallowing was what you needed to do so I kept sipping on water and tea all through treatment and thought I'd be OK. But in fact, one can swallow liquids and still have problems with solids later as I have found out.