How many of you have done/are doing therapy for swallowing? At what point in tx did you begin the therapy?

I met today with a Speech pathologist to have my swallowing checked pre-tx (passed water and pudding - failed cracker - we'll do the modified barium swallow next time)and learn some tongue/swallowing/mouth exercises.

I told the therapist about this group - she said she'd be interested to know from a mixed group like this when people were most likely to have been referred to a therapist, what they did, and what they thought of the process and results.

If you could/would share, I'd be grateful.

In my area, the therapist said that even 1.5 years ago, nearly 100% of H&N cancer patients she saw were referred to her after dificulties had set in, and she saw nearly no patients on a pro-active basis to try to lessen (or avoid) difficulties.

Thanks for any help you can give,

- Pam

Pam,

My first session on swallowing therapy was a month after RT. I had a total glossectomy so the only way I could eat, at this point, is to swallow blenderized / pureed food. I had a total of four swallowing sessions, my last one was about three months after RT, where in between that time was a series of exercises for me to swallow water first, then soup and finally a much thicker consistency like smoothies.

My next goal is to be able to chew and swallow soft-to-solid food. Although I could technically chew today, I could not control movement of food in my mouth due to my flap permanently anchored to the floor of my mouth.

I hope this somehow helps.

Jojo

Thanks, Jojo - I'll be sharing this info with my therapist (well, with the director of the Speech/Audiology dept of my local hospial - a different therapist will work with me the next time I go). I got the feeling that while they're seeing more H&N cancer patients, they're still not seeing an awful lot. I did mention VitalStim (hopefully, I won't need it), and was told that the hospital didn't even have the equipment - I'd be referred to a nearby (across the street) rehab ctr if it were necessary.

I think the director is hoping I'll give her a "real patient" view.

Thanks again,

- Pam

Pam

My first go round with cancer, I just toughed it out: no PEG, no swallowing therapy: just Pain & seltzer water rinses with each sip of Ensure. My swallowing was slow but consistent each and every day as otherwise I would have starved. (I did drop down to about 125 lbs which at 5'11" is unhealthy). I quickly progressed after TX to regain full swallowing and chewing ability and could eat most foods.
After the cancer came back, the surgery left me unable to swallow at all. I am still on the PEG 100%. That would be bad enough but then I had a second round of radiation which I was forewarned would severely hamper my chances of swallowing again.
I have had a total of 40 swallowing therapy sessions (24 with VitalStim) of an hour a piece as well as practiced an hour a day with the standard swallow therapy exercises: forceful or effortful swallow, mendelsohn manuever; suprglotti swallow; and my personal favorite, the Shaker exercise. I have been doing the daily exercises for 5 months now and still have failed miserably three Barium Swallow tests. My next MBS is Thursday.
Hope you have far better luck than I with your sessions. Bear in mind that I am at the extreme end here and do not even qualify for any of the NIH studies due to too much surgery and radiation (NIH likes to at least have a fighting chance to prove a therapy works by excluding the worst case scenarios)

Hello Pam:

About 3 months after neck dissection and IMRT, as I was still having a lot of trouble swallowing and thus was staying on a liquid diet, my oncologist recommended a swallow specialist. I first had an esophogram, then saw the therapist. She recommended a video esophogram, which I then had, and she also gave me exercises to do. A subsequent endoscopy revealed a web growing across my esophagus (for the second time), which was largely responsible for my inability to eat solid food.

Things have been better since, and I'm eating soup and other light fare, but I'm still having trouble swallowing and I take everything with water. I'll probably have one more followup session with the therapist before moving on.

Hope this helps your poll.

D2

Because this is such a common issue with those of us treated, and it has such quality of life issues, it is very important to me personally, and to OCF in general. We have put up material that is based on a CME course on dysphasia on the OCF main site. I would like to know a couple of things. How many of you that are answering this little poll have read it, what you think of it, and if you would be interested in writing a "patients perspective" on the issue as a continuation of the information on that page.

Charm - as a very analytical thinker, I wonder if you in particular would be involved in writing this patients perspective which might take the form of various name and comments/observations for individuals in a list form, or might be an edited composite of patients perspective of which I would like you to be the person that takes all the comments and creates a "composite patients perspective" from them. The information is here

http://oralcancerfoundation.org/dental/e_s_issues.html

Brian,

I made a first-pass read on it just now and am thankful for directing us to this specific site. I think the article is well written, gives a comprehensive view of dysphagia vs a normal swallowing function, and details treatment recommendations.

Two items from me:
1. Is there a latest version of this article? Am not sure if this article is as old as Nov 06, '02 (as indicated just prior to "Abstract and Introduction") or as recent as Nov 14, '08 (as indicated on the upper right margin section of each page).
2. While it gives a very good narrative of treatment suggestions on page 8, perhaps a minor improvement to include illustrations and/or pictures will also be helpful to the readers, particluarly on the item about Postural Strategies. (For Pam - this is the same procedure suggested to me during my swallowing and speech therapy sessions)

Finally, on your last item - Yes, I would be interested in writing a patient's perspective, if I am allowed to participate.

Thanks again.

Jojo

Brian

I had read this very informative article before and used it as a basis of discussion with my first speech/swallow therapist as well as my second (VitalStim) speech pathologist. It was actually somewhat depressing to me when I read it as I pretty much track the indicia for "severe" dysphagia with limited outcome (Excision of tumor at base of tongue right down to the hyboid bone with perineural involvement then reradiation post surgery on already radiated area)
Nevertheless, I would be glad to compile an OCF patients' perspective. Not quite sure of the mechanics you envision for comments to flow to me but confident it is doable. Maybe a new thread?
Ironically, I am off today for my fourth Modified Barium Swallow test late this afternoon.

Brian, happy to contribute my $.02 whenever the patients' perspective is ready for roll-out.

D2

Brian

Just a quick clarification that if you truly need an "analytical" perspective on the dysphagia OCF page, perhaps DavidCPA, Donna, DonB, Leslie, Karen,or HisNibs pop to mind moreso than myself. While I am excited about synthesizing a "patient's perspective" on the OCF rendition of the CME, compiling quotes in a methodical manner is not really my strength. I am far more INTUITIVE than ANALYTIC and more DIONYSIAN than APOLLONIAN. So I intend to rectify what I complained about earlier to you, the lack of biting Cancer humor in these articles. From a patient's perspective, it is quite simple: How Long before I can Swallow enough to eat again and get rid of this PEG? What do I realistically need to do to accomplish this? What are we talking about here in terms of weeks, months, & years? Those are the questions I would ask the OCF members to respond to as those are the answers we all want yet they remain questions that no medical journal article ever even asks.
Just so we are clear on what product I will deliver.
Charm