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Hi all --

Barry had his swallowing evaluation at Hopkins yesterday -- bit of a snafu earlier when they failed to page the therapist that we were there and waiting, but eventually we got together and he had it done.

Essentially, they had him swallow various materials tagged with barium and watched the functioning of his throat and esophagus on a fluoroscope (moving radiograph) -- also, they had him enunciate various words and sounds, also watched by fluoroscope. They also checked the passage of swallowed materials into his stomach.

What he had to swallow included a thin liquid (milk-like), a thicker liquid (like a cream soup), applesauce, and part of a graham cracker with a barium "paste" on it. Volumes of all of these were relatively small. He had no problems with any of these although he had not drunk (or eaten) anything since 10 pm the night before (the therapist explained that they want the throat and mouth to be dry so that the barium shows everything. He could rinse and spit out water a bit if he really got too dry.)

We do not have the written report yet but the therapist met with us afterwards. She had some interesting things to say. First, she said Barry still has swelling in his soft palate and epiglottis, which was not unexpected and in fact, said in that regard he was better off than 90% of the people she usually sees 5 weeks' out from treatment. However, this is still preventing his muscles from working 100% efficiently at moving food back into his pharynx, and his epiglottis from closing (seating) completely when he swallows so he did aspirate some of the material -- interestingly, mostly the thick liquid. It seems to get "hung up" in the back of the throat and then, some gets into his trachea when he breathes.

She agreed with the doctor's thoughts, that when Barry had the pneumonia that it may well have started with aspirated food -- at the time Barry was using "Larry's mix" -- one of those numbing rinses -- and she felt this makes the risk of food aspiration much greater (which our RO nurse also says). In fact Barry stopped using this mix at that point because we got worried about aspiration.

She also said that she wanted to give him some exercises to improve his swallowing which, together with resolution of the swelling, should alleviate the problem. She did warn -- and this should be considered by everyone who gets radiation -- that many problems with swallowing etc. due to radiation damage do not show up immediately, but gradually "creep up" in the year or so aferwards. Thus swallowing exercises should be continued even after the person appears back to normal.

She added that initially Hopkins only did swallowing and speech therapy with people who had had oral surgery, but then were finding their HNC radiation patients coming back a year out and reporting serious swallowing problems -- she said, "now we've gotten smart and everyone gets an evaluation. It is much easier to solve the problems if we catch them early." She agreed that patients who relied 100% on the PEG generally had the most problems, but this varied a lot with individuals.

She added that many times, aspiration of food or liquid is "silent" -- that is, it does not lead to coughing, choking or a feeling of having something "going down the wrong pipe." In part this is due to the nerve endings in the region being damaged by the radiation and also, being somewhat desensitized due to the repeated mild aspiration. She told Barry to avoid thick liquids (great, mostly what he eats now!) unless he also uses a lot of water to make sure it doesn't get "hung up" -- that it gets swallowed before he breathes. She wanted him to try less sticky foods and to try dryer things as well, since he had eaten the bit of cracker OK.

She also said to watch for the signs of pneumonia -- especially -- emphasis mine *excessive colored phelgm*, pain breathing etc. though she said several times that Barry did not have the characteristics of someone vulnerable to pneumonia and in fact, if it had not been for his earlier bout with it, would not have been so concerned about the minor aspiration problem.

We met later with our RO, resident and nurse and they did an endoscopic exam -- Barry doesn't have any open ulcers or sores, just some residual inflammation and it all looks good. Right side looks most inflamed (where he had most rads, also surgery), hence the pain. RO said that the problems therapist noted re thickening of pharynx and epiglottis were almost certainly temporary and would resolve in time. He added that on a scale of 1-10, 10 being best, Barry was at this point a 9.5 so he should just continue doing what he is doing. He agreed with swallowing therapy however, and also, the continued use of the Thera-bite. He wrote scrip for the new 12.5 mcg Duragesics as he wants Barry to try to wean off the patch over next week or so.

Next appointment is Monday with our ENT -- the woman who herself had HNC -- so Barry will probably have another fun visit from the endoscope! At least she gives you a lollypop afterwards! wink

Best,
Gail and Barry


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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That's interesting he has the most problems with thick liquids, which I can do pretty well, but can eat a cracker, which I can't imagine doing. It seems like what shows up on these exams is a little different for each person. For example, although I didn't get to the cracker (or even the slice of pressed turkey with barium and mayo), the doc said there was no evidence I was a silent aspirator. When little bits of stuff went the wrong way I would either swallow again or clear my throat or cough--and that was the good news.

The bad news is my epiglottis really doesn't move right and I have serious problems with anything involving solid food still.

I'm curious what the exercises were that Barry was given.

Anyway, I'm glad (and not surprised) that he is a 9.5 of 10 overall. He certainly is doing worlds better than I was when I was five weeks out of treatment. And I'm sure he owes a lot of that to you. You've been a really diligent caretaker in all this!

Nelie


SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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Hi Nelie --

We meet with the therapist next Wednesday fr the follow-up and I will let everyone know what sorts of exercises he is asked to do. She didn't describe them but said they were "easy" and could be done "while doing something else."

Actually, Barry didn't *know* he was having a problem wth thick liquids -- these are what he eats all the time, like cream of broccoli soup -- but the fluoroscope showed the aspiration, which he was unaware of. He was very wary of the cracker but got it down and also, without pain. This encouraged him so at lunch he tried (and ate) part of a meatball and some soft bread (washed down with water). So he is branching out!

Best, Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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that is good news Gail! How informative your visit was and I appreciate you taking the time to post all of that information. It is very helpful. Keep us posted on his progress.
Tami


Tami
Mom has Bot scc stage T1/N1= stage 3 dx 6/27/05 treatment IMRT & chemo (docetaxel, cisplatin, 5FU) ended treatment 8/22/05 Cancer free as of Feb 2006
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Hi --

Just an update -- we visited the swallowing therapist at Hopkins again. This time she had the doctor's report and also, the images from test on her computer. The report said that Barry's epiglottis was thickened and didn't tilt enough, also there was weakness of the constrictor muscles in pharynx and of his tongue.

Using this report she had drawn up a series of exercises for him to do to strengthen tongue and pharyngeal muscles and to make him more "aware" of his swallowing motions.

I won't go into detail on these because they are specific to his case (that is, don't try this at home!), but in general they involve resistance exercises for his tongue, "hard swallowing" with him feeling his larynx move up and down, several suction exercises and one involving making certain sounds.

We did discuss some about the factors which make patients more suceptible to aspiration pneumonia. The therapist cited a large study done at VA hospitals with HNC patients who had initial swallowing problems post- treatment. The high risk factors included: poor oral hygiene (as these bacteria are usual source of the infection), tobacco use, sedentary lifestyle, feeding by another person (such as in a nursing home), other co-mordibities such as COPD. She said Barry had none of these so was unlikely to get aspiration pneumonia again but...to do the exercises to make sure!

Barry asked her how many of the HNC patients she sees who have swallowing problems post-treatment (most have some) are found to be at risk for aspiration pneumonia, and she surprised us by saying "almost 50%" so it is an issue folks should be aware of.

Also, she said that many doctors do not refer their oral cancer patients post-treatment to a swallowing/speech therapist, although this is improving. At Hopkins it is now standard protocol but a couple of years ago even there, only the surgical patients got these referrals. At local hospitals it may not happen unless the patient is proactive and requests a swallowing evaluation and referral to a therapist. (An aside, both our community hospitals have swallowing/speech therapists, so they are not only at the large CCCs).

The therapist also added -- the most important thing is compliance with the protocol -- that she finds the patients who show most improvement are the ones who generally do their exercises and who stay in contact with her if there are problems (which might mean a revision to their therapy plan).

She added that swallowing probems, as well as trismus, can "creep up" on a patient in the months after treatment due to late radiation damage and so it is important to get started on any needed therapy as soon as possible, She said, for example, that Barry should continue to do the exercises even after he feels the problems are resolved and also, continue to use his Thera-bite for at least a year. (She is also a big fan of this device).

We see her again in 6 weeks...

Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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Gail, Jerry had his swallowing evaluation today, so I came back to this thread to compare notes on what they did with him compared to what happened with Barry. I wasn't there, but he described a similiar process to the one Barry had. His therapist told him that his muscles seem to be working properly and everything really looks OK. In his case, they said it is the reduced saliva that is causing the swallowing problems that he has. He actually is doing pretty well, albeit slow, with his eating. We've been going to restaurants a few times a week lately and the servers keep trying to take the poor guy's food away since he is still eating way after I'm done. I keep reading that the saliva function should continue to improve for 12 months or more after IMRT so there is still an opportunity for more improvement. He also tried several acupuncture treatments specifically for xeristomia recently. It may have helped but it didn't 'fix' it.

Connie


Wife of Jerry - Dx. Jan '05. SCC BOT T1N2BM0 + Uvula T0N0M0. Stg IV, Surg on BOT and Uvula + Mod Rad Neck Diss.(15 rmvd, 4 w/cancer), IMRT 33x. Cmpltd 5/9/05.
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Connie, I am happy that Jerry is doing well. There are mixed reports here about how long one might see improvement. Some say at two years you get what you got. I can tell you that some (me) continue to improve well after even four years. In fact just today I was eating something that I popped into my mouth before getting the obligatory glass of water. Usually this causes a bit of panic to set in but this time I had enough spit to make do!


Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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Connie,

I don't know how recovery times for salivary function compare for XRT vs. IMRT, but as someone who had XRT I can tell you that I continued to see improvement in my saliva level for quite a few years after treatment.

Cathy


Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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Our ENT (who had coventional XRT over 15 years ago) said her salivary function continued to improve for a number of years after treatment -- as I recall, 5 or so -- she also now uses Evoxac which she prescribes for all her xerostomia patients as well. She says it helps a lot, especially at night when she still has dry mouth issues. (She doesn't have much problem during the day but does sip water).

Gail

p.s. Barry has been doing his swallowig exercises religiously and even after just two weeks is having far fewer problems, maybe due just to healing -- and loss of inflammation -- and some to the exercises.


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!

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