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
------------
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

Gail, could you describe some of the exercises? It might help if Teri had an idea what "swallow therapy" might entail, and since I haven't been through it, I can't post anything worthwhile. (I would really like to know, too.)

Andrea

Dear Bonnie and everyone else - when I printed out comments from everyone, I placed them next to my son's bed (he was sleeping) and when he woke up he pointed to Wayne's comment about adult children taking advice and he smiled and gave me the "thumbs up" sign. So I continue to do that. Gail - your post to Bonnie (Worried Mom) helped me, too and am going to see what we can do about pain management while waiting for our "pain management team" to decide what to do. My son has an appointment with the doctor that treats his depression on Monday so hopefully, that will help, too. He just got the news yesterday from Social security disability that his claim was denied because he was not depressed enough nor disabled enough to qualify and that we could hire an attorney to pursue it. I'm trying really hard to summon up the "glass half full" side of my personality and see the good in the assessment that he's "not disabled nor depressed enough". I've always believed that there is always something we can do about whatever situation we are in - so I am going with that.

Hi Andrea --

To start with, the swallowing exercises are developed for each individual case, that is, ones that Barry did might not be any use (or even good) to otehrs. Each person should get his or her own test and get exercises specifically designed to address the problems identified.

In Barry's case the barium swallow test showed lingual weakness (weakness of tongue muscles), weakness in two of the muscle groups which move food to the back of the throat and into the esophagus, and his epiglottis was contracted and did not close properly (thus the risk of aspiration of food or liquid into his lungs). In fact, they found he had "silent aspiration" of thick liquids (that is, he was unaware of this and did not give the same reflex cough response we might do for food getting into our windpipe, this possibly due to nerve damage or numbness of the area after radiation). In fact, just after the end of treatment he did get an aspiration pneumonia which put him into hospital for 3 days. They did not find any strictures or ulcers in his throat or esophagus.

To give you an idea of what the exercises were for him, they included:

1) lingual stengthening: pushing tongue against tongue depressor held in front, and to both sides (with fingers against cheeks) for a certain count or until fatigue is felt. Goal is 10 reps 3x a day. Stop if any pain.

2) suction to strengthen throat muscles: using a straw, pick up a piece of tissue paper or cotton ball by mouth suction and hold for count of 5. Move up to Post-it note size paper, with the goal was to get to 3 x 5" index card size and hold for 10. Again, do 10 reps 3x a day. This was very hard to do at first, it took some months to get to index card goal. Barry still repeats this exercise once a day as it was the most difficult.

3) "Masako" swallow: when drinking a liquid, hold tip of tongue between teeth and try to swallow this way and repeat several times a day.

4) Effortful swallow -- Do at mealtime or when drinking, try to swallow as hard as you can -- really push against roof of mouth -- should feel muscles contract and larynx move upwards as you hold fingers lightly against throat.

5) make a "siren" noise, while holding fingers lightly against throat. Should feel larynx move and throat muscles tighten. Only 3 times for 3 seconds max as can strain vocal cords.

Barry did these for six weeks and then went in to see therapist again. If he had been having a lot of problems or no progress, the migth have done another barious study. However he was getting better so he was simply told to contnue and check in if there were issues or questions.

Again, I need to emphasize that these are among the types of exercises which a therapist might prescribe, they were specifc fr Barry's status and others need a full consult with a speech/swallowing therapist before doing any of them! These therapists are not too hard to find, for example, both our local hospitals have them and can also do the barium tests as well.

Gail

Gail, thanks for giving us these examples of swallowing exercises. It helps me to understand the types of exercises that would target a specific group of muscles used in swallowing, and it also helps me understand the need to KEEP SWALLOWING through my upcoming radiation treatment so I don't have to spend the rest of my life making up for what I could have saved!

Andrea

Anne Marie,

You may want to get with/e-mail Gary Allsebrook and ask his advice about your son's SSDI claim. Gary is the only one around here that I know of that was approved for SSDI. Let me know how your appeal goes, please.

Good Luck
Tim Stoj

Anne Marie,

I represented a former emplyee once at a SSDI hearing and it's not intimidating at all. It's just a matter of conveniencing the panel (3 people when we did it) that the person is unable to work for whatever reason. If you can't afford to hire an atty consider doing it yourself. What have you got to loose at that point?

Thanks David and Gary for the good ideas. I'll suggest them to my son tomorrow when I see him. Today he ate his first sandwich out in a long time at a sub restaurant we know as "Nixon's Deli". They steam their buns making them very very soft and it was the smallest size and he warned me right away that he'd probably only be eating 1/2 of it but "I can't believe he ate the whole thing!" I saw him wince at one point when he swallowed so I know he still hurts a lot but it made me really feel like celebrating and I was so proud of his progress and his effort! And I am so very grateful for all the help and compassion we've received and continue to receive at OCF.

Anne-Marie {and Stoj] My husband was approved for SSID on the first try-however the first try took several months of long phone calls between me and the case worker, many, many documents from his Doctors, etc. One day, I put John on the phone with the SSDI case worker and told her to talk to him. After a 15 minute conversation of her not being able to understand most of what he was saying, she agreed that he could no longer fullfill his job responsibilities. I also invited her to come to our house and talk to him "eye ball to eye ball", She decided it wasn't necessary. It takes persarverance to do this, because there are many people trying to scam the system. Legitamtate claims are worth the fight. Amy

Hi Anne-Marie --

First, INSIST that your son get PROPER pain management NOW. The standard of care for head and neck cancer treatment and post-treatment includes pain management (often opiates, as noted above) -- waiting two weeks for some "team" to come up with a plan is ridiculous, there are clear guidelines available from NCCN and also, the extensive literature on cancer care and it doesn't take any two weeks to find these out.

Secondly, there is quite a bit of existing peer-reviewed literature demonstrating HNC post-treatment disability -- one of the more recent is Taylor et al (2004) where they found over 50% of treated oral cancer patients were too disabled to return to work. The abstract is at:
http://archotol.ama-assn.org/cgi/content/abstract/130/6/764

You can also follow up papers in which this work was cited and also, do a google for "diability and head and neck cancer" for other papers.

These should help bolster your argument with SSDI.

Gail

Hello Ann- Marie,
What great advice from Gail. Pain is one thing you CAN NOT let get ahead of you. Also please use softeners to protect against constipation.
I also recieved SSI for about 4 yrs. The only thing is that when I qualified it was during my Leukemia dx. and I was up for review annually and right when they were sending me back to work I was dx with the Nasopharynx cancer which extended me another 2 yrs. It is extremely difficult to qualify for the first time, I was one of the lucky ones. I wish you luck and strength in what is a very difficult time for you and your son.
Mark D.

Anne-Marie, I too am amazed that your son was taken off the hydrocodone & given ibroprofen! There is no way that Advil would come anywhere close to touching Teri's pain! Her medical onc told her on Thurs that he was ready to prescribe the Fentenyl patch for her if she felt she needed it (she elected to try & stay with the oxycodone - she's concerned about feeling drugged with the Fentenyl.) At 2 weeks post tx she's feeling 'the worst pain she's ever experienced' as she explains it. How could any doctor in good conscience prescribe ibuprofen for that kind of pain?!? It's my hope that the oxy will continue to see her through, but I won't hesitate to encourage her to accept the Fentenyl if the suffering gets any worse. I'm with Gail & all above - please see about getting your son some significant pain relief ASAP!!
By the way, Teri did take a few sips of tea & 2 teaspoons of ice cream (of course it was Haagen Dazs) today. She said it was like swallowing glass shards but she did it & promises she'll do more tomorrow. I can't believe I'm so excited over an ounce of liquid, but it's a baby step forward in this long journey!

-----------
Bonnie
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 Bonnie --

Actually, my husbnad was happyty to get off the oxycodone and onto the fentanyl as he felt FAR LESS DRUGGED! The oxycodone made him woozy and he was, for example, unwilling to drive, on the Duragesic he felt pretty normal. Also, it controlled his pain better -- as the oxy is short-term (4 hours) whilst the Duragesic lasts 72 hours.

One caveat -- when he first went onto the fentanyl (25 mcg) he had 2-3 nights with vivid dreams and restless sleep -- apparently this is not unusual -- and he kept a night-light on! (By then I was sleeping in the guest room anyway, as he was having to get up several times in the night with the usual phlegm issues.)

If your daughter is feeling that kind of "worst pain" she needs more help. Suggest she try the Duragesic with perhaps the oxy for "break-through" pain -- that's the norm at Johns Hopkins and they treat 100s of cancers a year.

Gail

Just wanted to update everyone on Paul's (my son) progress. He is three weeks, 4 days post treatment and doing so-o-o much better! A few days ago he received the great news that his Amifostine is being paid for by the drug company so that saves him about $28,000! I posted this news in the Financial forum. He is eating very well. The thing he wanted most to do was to go to Taco Bell and have a chicken burrito which we did and he even went back again later in the evening for more Taco Bell. Just seeing him take the first bites of the burrito were exciting as I searched his face for a reaction and hoping he could manage it. It reminded me of when he was a baby and his first spoonful of sold food at six months and how we applauded him! The SSDI news (claim denied) was disappointing but since he is still hoping to get a job quite soon, he thinks he may not be eligible anyway. A couple of the jobs he applied for were turned down because of his credit rating and I hope he doesn't get turned down because of his cancer. He does have some other good prospects for some computer programming jobs, though.
We received the Carnation VCH online and at 560 calories for 8 oz, that will help a lot. The pain has decreased making it easier for him to eat and swallow and he hasn't wanted me to call the doctor for more pain medication. The "pain management team" should be getting back in touch with him soon so we'll see what happens (I'm keeping the OCF pain medication info handy, tho'). Everyone's posts have been so helpful to us and so appreciated. Bonnie, I hope your daughter is doing better, too.

Ann-Marie - I'm so happy to see Paul is progressing well. It is lousy to have to worry about work and career decisions on top of cancer. I'm betting on Paul, and hopefully before you know it he'll be out at lunch with his new work associates eating anything he wants of the Menu.
Always,
Mark D.

Anne-Marie,

It's amasing how we all seem to feel much better around the 3rd week post Tx. It will get better as time goes on; not day by day but it does continue to get better. I am 4 months out and I still see slight improvements. I am waitng for my dry mouth to go away even though it is much better than it was 2 months ago. My taste has almost fully returned but the dry mouth tends to hide that improvement. I still drink VHC every day to supplement my eating.

Glad to hear Paul is on the mend. I hope he has good fortune in the job hunt.

Take Care
Tim