Happy New Year all! My daughter is now 2 weeks end of radiation & has hit a stumbling block. I understand the pain is at it's height right now & she's doing well with just Oxycodone. However, she has stopped swallowing, saying it's just too painful. She's even started spitting the mucous out again (she had been swallowing up till this point). We're grateful for the g-tube as it provides the avenue to get the required calories/fluid in, but the "convenience" of it makes it easier for her not to swallow. I've preached & nagged till I'm blue this past week and not having any success. Her response is 'if I have to have swallow therapy then that's what I'll do'. She's been really strong up till this point in dealing with the amaphostine challenge (had to stop after 10 due to SEVERE nausea/vomiting) & radiation burning. But I haven't been able to get through to her about the importance of swallowing. And yes, the rad onc & dental onc stressed the importance of swallowing too! Any suggestions?
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CG daughter (age 41) SCC lateral side tongue, surgery 10/16 + modified neck dissection, stage 3, 1 pos node, IMRT x30 finished 12/22

Tell her she probably only has about another week before she will start to feel much better than she does now. Tell her don't give up now when the end is sooooo very close. I stopped all meds in my 2nd week post Tx because I was fed up with the nausea. I swallowed through the pain and I think it helped me in the long run. There are many people here that complain about swallowing problems and have had to have therepy which doesn't sound like too much fun.

I agree with David; swallowing is a learned skill to a degree, and it's incredibly easy to forget how to do it. It doesn't take very long before that will be that case, and dependancy on the gastric tube is way too easy to start, and really really hard to break.

Reading through the forums you'll see many examples of people having tubes for months and months post treatment. While I have no doubt that they neded them, I can only speak to my own experiences.

I did not have one, and I don't regret it one bit. I had a G tube after surgery, and I was determined to avoid a repeat during radiation.

It hurt to swallow, a lot. I had the typical mouth sores, mucous problems, both compounded by rather extensive post surgery swelling. There were days that I would take liquid morphine, then gargle with lidocane, and THEN take small sips of Resource 2.0 ( a liquid nutition drink). It hurt that much to swallow.

It got worse for a while after radiation too. By three weeks out, I didn't have to take painkillers every time, and the sores were starting to go away. Within 6 weeks, the sores were healed, my taste was returning, and I was able to swallow. Without pain, and without speech therapy.

It's hard to tell an adult child anything (believe me, I know all too well) but maybe if the advice comes from a fellow cancer survivor/s, it may be easier to take
Wayne

I can really symphatize wih Worried Mom since I am a worried mom, too and we both have adult children at about the same stage. My son's radiation treatment ended on December 19th. He doesn't have a feeding tube and he is experiencing a LOT of pain. He saw his surgeon today and they took him off the Hydrocodone and said that the "pain management team" were getting together to decide how to help him manage the pain but that it will be two weeks before they get back to him. He's taking a lot of Ibuprofen and I worry about the effects on his liver. He's drinking a 350 calorie drink plus Gatorade and tries other stuff like grilled cheese or soup but doesn't eat much of it. Can't seem to find the Carnation VHC (560 cal) around here but still looking. The posts on this page are really helpful and I've printed out this page and will give it to him when he wakes up. He doesn't sleep much at night and altho' he's only complete two weeks of the post treatment it seems like a whole lot longer. I hope he does start to feel better soon and I hope for the same for Worried Mom's daughter, too. Thanks so much for all the positive posts.

Dear worried Mom, It must be difficult watching your child have to go thru this. I had a different form of radiation and it was close to 2 yrs before I got my peg tube out , every person goes thru treatment with different levels of side effects.I think at this time it is probably more important that she get her calorie intake. There were many times I had difficulty swallowing but thanx to meds I was able to work my way thru it and there were other times where swallowing was impossible due to pain. If my memory serves me correctly I think I said to my Dr." If you can swallow this apple I'll swallow your pill" otherwise give me some liquid morphine. That was 7 yrs ago and I can eat anything now.
I think its great that David and Wayne are swallowing so well right now but it didn't come easy or without a price. Hopefully your daughter will be in the same place in time,wishing you well and make sure to take care of YOURSELF, Being a Caretaker is so draining .

Tell her that the swallowing exercises don't always work and some folk wind up never being able to eat or drink anything again. I had no peg so had to swallow. If she can swallow some lidocaine and then try to drink some water or liquid food it will help. The more water she can get through her system the better. She needs to swallow some to keep the function working. Also since she in the peg, make sure she yawns and stretches her face muscles to avoid getting trismus.

Take care,
Eileen

Anne-Marie,

You can order the VHC through the pharmacy depts at a Walgreens or a CVS which is the easiest or you can go directly to Nestles web site and call them and and they will ship it to you or you can give them your zip code and they will tell you who carries it in your area. If none of those is fruitful e me and I'll buy a case and ship it to you myself.

I have been on a PEG since Feb 04 when a I a near total glossectomy among other things. I was told not to even think about eating or swallowing until radiation was over (in May 04). Then in Jine 04, I got a cellulitis infection in the neck incisions where I had radiation and a neck dissection. My ENT kept putting therapy off until Nov 04 (said I wasn't "healed" enough). After a year of assorted therapies, I finally passed a modified barium swallow test in December 05.
Because of all the delays and my own weakness, I feel I have become dependent on the tube. Another factor is that because I have no workable tongue, my therapist suggested taking liquids and pastes through a syringe. I push the plunger into the syringe to push the "food" to the back of my throat for swallowing. I do this several times a day to keep my swallowing intact and also use a therabite to stretch my mouth daily.
Needless to say, I can't go into a restaurant and use a syringe (just think how it would look pushing a sryinge at the table) so I take my PEG nutrition first in the car or home first. I have tried to eat something without it, but without a workable tongue, I can't get the food to the back of my mouth.
Sounds like a like of ecsuses for not getting off the tube which probably will need changing soon since I had 2 infections in the area where it goes into the stomach.
I understand some folks who had total glossectomies can eat things including solids by mouth. I adnire them. Maybe they are more determined then me. I haven't found anything in many searches where the sunbect of assisting people like me to eat is discussed in terms of providing help. My therapists were helpful and I am grateful that they got me to pass a swallow test but they had practically no experience with HNC patients let alone experience with the small subset of "glossectomites".
My point in this lengthly piece is to encourage all to get therapy as soon as they can. I hope most have enough tongue left that can function to get the food to the back of the mouth.

Jim Haucke
-------------------------------------------------- SCC Rt lateral tongue Dx 9/03, Surg 11/03 (T2/N0M0);recur SCC BOT and anterior tongue Dx 1/04; surg 2/04 (T4/N0M0) subtotal glossectomy, forearm free flap, floor of mouth reconstruction,pharyngoplasty;trach until 3/04;PEG still have; 36 rad (3/04-5/04)therapy 12/04-12/05; 2 esophagus endoscopies

Thank you all for your notes. I am printing them all & giving them to Teri. As you know, sometimes kids accept advice from strangers better than they do their parents! We're forging on through recovery and hopefully "cure". It's amazing how this awful disease continues to haunt you daily. We still have the dreaded PET scan in a month or so & until & if we get an all clear the fears are still there!
Bonnie
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CG daughter (age 41) SCC lateral side tongue, surgery 10/16 + modified neck dissection, stage 3, 1 postv node, IMRT x30 finished 12/22

Dear Worried Mom --

When my husband Barry was first diagnosed, his ENT talked to him very seriously about getting through the treatment. As a young woman, she herself had gone through surgery and radiation treatment for a neuroblastoma. This was before the days of PEGs and so she had to swallow if she wanted to survive, she gargled with lidocaine and then swallowed a bit -- it hurt so much tears were running down her face but she did it. She told Barry that he *had* to keep swallowing, that she was monitoring several patients treated elsewhere who (in her words) "cannot swallow their own spit," even two years out of treatment, *despite* swallowing tests and lots of therapy. They had simply stopped swallowing and the muscles and tendons had atrophied, plus there was scarring and fibrosis as well.

Barry took this to heart and although at Hopkins, where he was treated, they want you to get a PEG before the start of radiation, they also stay on you to keep swallowing. Now they have all patients meet with a swallowing therapist beforehand and about 5-6 weeks after the end of treatment, the latter for a barium swallowing test. Problems identified are addressed, which might mean exercises, or perhaps dilation if there is a esophageal stricture, etc..

Hopkins is very serious about pain control -- which has improved a great deal since our ENT was treated. For example, the oxycodone that your daughter takes is only considered a short-action pain-killer and often not sufficient to control the serious pain associated with mucositis and other impacts from radiation. Most patients end up with Fentanyl (Duragesic) patches plus oxycodone or morphine for break-through pain. Some go onto oxycontine, which is a time-release oxycodone. There are also numbing rinses though our nurses didn't like them much -- if they numb the throat too much, there is a danger of aspiration of food/liquid into the lungs. Patients also can get acupuncture for intractable pain. Barry had 25 mcg Fentanyl patch (some patient get up 100 mcg patches), he would take oxycodone about 1/2 hour before eating and in some cases also Tylenol concurrently. Once in a while he also had to use the numbing rinse though he also didn't like it too much as once or twice he almost choked.

If your daughter is having too much pain to continue trying to swallow, you MUST talk to her doctors. Proper pain management is a PATIENT RIGHT (emphasis mine) and circumstances like that recounted by Anne-Marie (her son is only getting ibuprofen?!? My God!) is starting to verge on malpractice.

My husband ended up eating all the way through, although at the end it was very soft foods like scrambled eggs, mashed potoatoes, cream soups, Boost (or equivalent) etc. And even though he continued to swallow, the swallowing evaluation 5 weeks after end of treatment revealed muscle weaknesses as well as problems with his epiglottis closing completely. He was given a series of exercises which he did religiously and in fact, 16 months afterwards, still does once a day to avoid problems creeping up, as they can, due to late scarring or fibrosis. He now can eat normally and virtually anything, except very spicy foods (though even this is improving).

So first, you must try to get better pain relief for your daughter so she can continue to swallow, even if only water or other liquids. It is really important to try to keep those throat and tongue muscles working...

Gail