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Joined: Aug 2016
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All,

My father is cancer free for past 6 months. He completed his stage 4 throat (hypopharyngeal cancer) treatment 6 months ago, which included 3 rounds of neo-adjunct chemotherapy followed by chemo-radiation (33 radiations). After radiation, he is aspirating when he tries to take in liquid and solid food by mouth. He is primarily being fed using PEG tube. He can have only pureed food by mouth without aspiration. Other side effects of radiation such as mucositis have subsided. We have gotten his swallow study done but doctors didn't provide good guidance on how to make his swallowing better. He is doing basic swallowing exercises daily now. Does any of you have any recommendation on if dilation can improve his swallowing considering the fact that aspiration is mostly with liquids or swallow therapy is the only option we have? Is vitalstim therapy safe and recommended for cancer patients?


He complains about having, at times, a slight burning sensation or very tiny pain while swallowing. Also, he has to spit out secretions in his throat every 1-2 hours, he wakes up to spit out 2-3 times during the night - is this something because he is unable to swallow his saliva? or these secretions are different?

Thank you all and you have a good day.


Last edited by ChristineB; 08-26-2016 03:58 PM. Reason: removed religion from post
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Joined: Oct 2012
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Welcome to the forum. I am sorry that your dad has need for a PEG tube six months after treatment. I can understand your concern and his frustration. My husband was on a feeding tube for two years after radiation and had major problems with dysphasia.

The swallowing exercises are important. They keep the swallowing muscles working so that there isn't further degeneration of their functioning. My husband's esophagus was totally closed by scarring from radiation but he kept doing his exercises in the hope of finding a doctor who could perform a procedure to open up the esophagus. Indeed, when his esophagus was finally opened, he was still able to swallow. The SLP's who did the swallowing assessment at that point credited that to his continued effort with the exercises.

I also need to let you know that six months after his esophagus was opened and six further dilatations later, John's swallowing deteriorated, he developed silent aspiration and had to be on thickened fluids. So, the situation is a tricky one and requires constant monitoring.

Did the doctor who did the swallowing assessment recommend thickened fluids? If so, what grade fluids (nectar, honey or pudding)? If you father is aspirating when he swallows liquids, then there is a good chance that he needs to have thickened fluids. Fluids can be thickened with a commercial product (in Canada we use "Thicken Up"). Anything that he puts in his mouth, including water, has to be thickened. I know John hated this but there's no other way to drink liquids safely. Your father should also avoid things like ice chips, ice cream, jello etc -- i.e. Things whose consistency can change when they melt. Also do not allow your father to use a straw. It is simply not safe and can lead to aspiration.

Aspiration is dangerous as it can lead to pneumonia. John had repeated bouts of pneumonia. The problem with this kind of aspiration is, no sooner is the pneumonia cleared, then another bout would develop. It will help if you can monitor your father's general condition carefully.

Dilatation will work if the cause of the swallowing problem is a narrowed esophagus. There are also risks related to dilatations, for example, the esophagus can tear in the process. The procedure needs to be repeated because the doctors can only stretch the esophagus so much each time.

If your father complains about pain or a burning sensation when he is swallowing, then chances are what he is swallowing is not the right consistency for him. John was given "honey" grade fluids to try one time, and, believe it or not, it was too thick for him and he had trouble getting it down. At the time, he was on "nectar" grade fluids.

The SLP told us that one will aspirate on one's saliva and eventually it will "catch up with you." It sounds ominous, but the reasoning is if one is careful about everything else one swallows, then aspirating the saliva only may not lead to frequent occurrences of pneumonia.

I am afraid I don't know anything about vitalstim therapy. It is best if you consult your doctors.




Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
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Welcome to OCF!

At just 6 months post rads, your father is still in the recovery mode. A complete recovery can take as long as 2 years. During that time your father will see many ups and downs and unfortunately most patients will also have some setbacks from time to time. At his treatment facility is there a speech pathologist available?

Over the years, there have been numerous posts about the VitalStim therapy. If you type a keyword into the search box located up towards the top right of the page, you can find many posts on this. Heres a link to one of the threads...

VitalStim discussion

As far as the throat stretching or dilatation are concerned, Ive heard many good things about them. Some members have mentioned the process many have to be done a few times before any noticeable progress. It also may need to be repeated every so often to help keep the throat open so it is functioning properly. If you do a search, Im sure you will come across many helpful posts discussing this.

Hang in there! Your father is well past the worst of it. In time, he should still notice more improvements.

Best wishes!



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile

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