After having been told the following at different doctor visits -- the throat is still quite swollen from the treatment (7 weeks post treatment), the swallowing muscles are intact (12 weeks post Tx), the epiglottis is still swollen and is the cause of aspiration (15 weeks post Tx)-- my husband finally got his swallowing assessment today. I sat in the control room together with the SLP and I was shown how the liquid was pooling at the upper esophagus and not going anywhere. The epiglottis still didn't close perfectly but that was not the major cause of the swallowing difficulties.

Tomorrow we are scheduled to see the RO and I will be asking questions about treatment options with regards to the swallowing. It has been a frustrating five and a half months trying to push the doctors to recommend a swallowing assessment and to actually get in to see the SLP (John got in today instead of end of July because I argued hard for a place on the SLP's cancellation list).

There are days when I feel I am running out of steam. Coming on to the forum has been such a great help to me because it is a constant reminder that patients and caregivers must advocate for themselves.

Persistence. That seems to be what it takes. Glad you guys got in early. John is fortunate to have you by his side Gloria.

Ed

So glad you are persistent with being an advocate for your husband. He is very lucky to have you in his corner. Good luck tomorrow! Please let us know how you make out.

Great job pushing and getting what you needed!!! Hopefully they understand now why you were so frustrated!

Good luck tomorrow with the RO follow-up in regards to treatment.

WE all have to be that squeaky wheel.

In Canada we have a great medical system - BUT - you have to advocate for yourself. It is 100 % true - the squeaky wheel gets the oil.

;o) good luck. Hopefully they will get his swallowing sorted out!

I'm afraid I have to take a minute to mourn the loss of a piece of the life we used to lead.

We saw the RO yesterday and initially he thought that's a possibility that an esophagus dilation might help. (John has extensive scarring from the radiation in his neck and I would think the problem he is now facing may be due to scarring or fibrosis.) But the surgical oncologist didn't think he wanted to do the dilation as in his opinion, it is a procedure that's only temporary and, hence, not a real solution. We now have a referral to a gastroenterologist and it is up to him to decide what can be done.

Today John and I had a discussion about the possibility of his being tube-dependent for the rest of his life. He said he didn't want to whine, I said he was entitled to mourn the loss of the enjoyment of food. We have decided that we will have to educate our friends with regards to how socialising with us can no longer be food-centred. John's cancer was vicious -- there were no clear margins and it was the kind that grew downwards and inwards -- that's why the doctors threw the heavy artillery at him. It was information I kept to myself all through his treatment (he was too overwhelmed to have heard and understood at the time) and only told him today. But it really helped him understand why he was given so much radiation.

Having said all that, we are still not giving up. We will go see the gastroenterologist and take it from there. But it is good to have that clear understanding between us.

I would also like to know if anyone on this forum has had multiple esophageal dilations that have stayed effective after a protracted period of time. It is okay to pm me if that is what you prefer.

Gloria,

Good luck and let's hope for the best outcome. Re his radiation, 70 gys is common, not the exception, for his Dx. That's also true for the chemo he received. That's the same amount of rad I and many many others had. Where the radiation is mapped or directed is very important in how one's organs respond which is one reason why some experience life altering side effects and others have none.

[quote=davidcpa]

Where the radiation is mapped or directed is very important in how one's organs respond which is one reason why some experience life altering side effects and others have none. [/quote]

Thanks, davidcpa, for your kind words. My reasoning is because the cancer didn't have clear margins, the doctors couldn't protect some of the areas which are vital in John's maintaining his swallowing functions. They just had to fry everything. Yesterday the doctor said that John was one of those who were sensitive to the radiation and the sensitivity caused much scarring in the areas treated. The positive side of this is the Tx probably worked better with the cancer, the flip side is that the scarring is causing the swallowing difficulties. I guess one has to take the good with the bad.

Gloria

Alex and I had a very similar story and Alex had his PEG for over 12 months. The SLP became his best friend. 3 years on, his food consumption is limited to thick soups but improvement continues...

Like your husband, Alex had a "shelf" at the back of his throat where his formula and gunk was pooling. My understanding of what the SLP told us is this: In Alex's case, the sequence of perstalsis which starts at the back of the throat was out of order or weak in places causing the pooling and choking when the "shelf" (which was the bit where the normal peristalsis action was failing) finally let go of its contents. The choking occurred when the epiglottis hadn't closed properly (still swollen) causing the gunk to go into his lungs.

With exercises and weekly visits to the SLP (and cutting the RO out of the loop as he appeared not to understand the issue) Alex improved. The "shelf" is still there, but his muscles have strengthened and he is able to swallow hard enough to push the food past it allowing him to at least swallow thick soups and small soft items of food. His epiglottis also improved and now mostly closes (took at least 6 months) and choking is less of an issue although still happens if Alex doesn't concentrate on what he is doing. This means that when Alex is eating, he needs to concentrate so I don't talk (which kills me ). We hope that one day, swallowing will once again become a habit and dinner conversation will resume.

I guess my point is that maybe things are still healing and what you can achieve now is still in process. I would also suggest you make the SLP your new best friend and see if continued swallowing exercises can help.

Our RO was not helpful and made a comment along the lines of "oh here comes the patient who has had more barium meals than anyone". When I corrected him and told him that Alex had only had 2 - 1 at the end of chemotherapy and before chemoradiation commenced (and the recommendation was that he stop taking anything by mouth) and the follow up 1 to see if the problem had resolved enough to allow for swallowing fluids, the RO replied that this was 1 more than the other patients got!!! This made no sense to me - how could one possibly know if the previous issue had resolved without a follow up test?

I voiced my concerns to the SLP when we saw her the next day. She was unhappy that the RO had said this and told us that her report stated that Alex had damage which required support (exercises) and continued follow up (tests). Apparently, the RO didn't understand this. Exit RO for this particular problem.

Alex loved his RO but not for anything other than radiation - he turned out to be unhelpful with any rehabilation issues and I remember the last time we saw that particular RO at 12 months, he DID admit that they were the "terminators" and others were better equipped to do the rebuilding. This gave Alex permission to seek help elsewhere. He also learned that I could make his life a whole lot more difficult than his RO could, and Alex finally got the message

Karen,

Thank you for sharing your experience. In John's case, the cause of the pooling seems to be a bit different. It seems that there is blockage from either fibrosis or scarring, as well as the thick mucous sitting in the throat directly above the esophagus. Like Alex, his epiglottis is starting to work again though it is not closing properly -- hence the choking when the liquid comes back up. I was in the room when the radiologist who was looking at the video said in a small voice to the SLP that "It does not look good at all." At the end of the session, the SLP said that there wasn't anything else that she could do for us. The surgical oncologist simply refused to do a dilation as he deemed it a temporary measure and not a real solution.

We will now have to wait and see what the gastroenterologist can and will do.

Hi Gloria,
Remember I posted a response to you on another thread? My husband is going through the same swallowing problems as your husband? His is also due to radiation scarring. So tomorrow, mine (Jack) is going to have a procedure where they insert a flexible scope up through the stomach (where his peg is) and a scope down his throat at the same time. Hopefully, they meet and he can dilate enough so Jack can swallow. If he can only dilate a small amount Jack will have a tube through his nose going down the throat to keep the area open for about 3 weeks, which the surgeon said will be a little uncomfortable. But then he will have another esophageal dilation to open up a little more & have the nose tube taken out. Then he'll have a third dilation in a few more weeks to open up even more. So there we have option 1 that it works the first time tomorrow and option 2 for the several dilations. Option 3 is major surgery where they have to open the throat and graft a tube in there or something like that. We are hoping not to have option 3. My husband broke down and cried in my arms this afternoon and I wept with him. But I told him whatever the outcome we will face this together and we'll get through it. Are any of these options doable for your husband? The surgeon that is performing this procedure for Jack is the original surgeon that we saw at the beginning of his diagnosis when robotic surgery was considered. He is an ENT surgeon at Johns Hopkins but operates out of GBMC in Baltimore. Do you have a surgeon you can consult with who does this kind of procedure? (the scope thing)
Also, we don't know first hand about having multiple esophageal dilations (yet) but I've read some posts on this site that some people have indeed had them and they are okay with it. Maybe after 6 or 7 of them it doesn't need to be done again? When we had mentioned to my husband's friend that he was going to have the esophageal dilation a few weeks ago, he said his brother has one every 3 months! and he's been having them for years! We know his brother and had no idea. Don't know what his condition is and why he has to have them but he has no problem with getting it done.
I am going to post tomorrow the results of my husband's procedure. I will keep you both in my prayers and hang in there. If you need any more info let me know either here or in a pm.
Hugs,
Pamela

BTW. What's an SLP? Swallow/Speech Therapist?

Speech/Language Pathologist....

"T"

Pamela, thank you for the very detailed update. It sure helps for me to know that there are going to be other possible routes that we can go down. Right now, John is still waiting for an appointment for his x-ray. His doctor is a gastroenterologist and a professor at the University of Toronto. Hopefully, he is aware of the latest developments in medical technology. I can see that it is a long road. Even if he can swallow again, it will take him a long time to get back to what he could eat before his TX.

I have spoken to him about educating our friends and telling them that socializing with them can no longer be food-focused, at least for the time being. People who have not been through the ordeal tend to think that once John has had a dilation, he will be the same as before.

When I spoke to one of our friends about this, she said, what do you mean, that we should now go to the movies instead� People can be deliberately obtuse like that. I persisted and explained again how so much of our culture is built around eating and drinking, etc, etc. It probably was not necessary, but I did it to show her that it really be no laughing matter for those of us who are going through it.

Please continue to update and I will do, too.

Gloria, reading your posts sounded like you were telling my story. My husband has had his feeding tube for one year one month. Very much wanting to eat a steak. He eats about a cup of pureed food to a pudding consistency every night. It has to be just the right consistency or he can not swallow it. I do not think his swallowing ability is going to fully come back. He has done vital stimulation through speech but that did not help at all. Has your tried any other treatments?