My husband had cancer in left jaw. He had reconstructive surgery on 3/12/2009 and then raditation and chemo. He has been on a feeding tube since that date and has not been able to swallow at all He has had (2) dialations and is currently seeing a speech pathologist but nothing seems to be working. I feed him every 2 hours 5 times a day. His left side has been affected and he cannot hold the feeding tube to feed himself. He also is still having trouble spitting up the thick stuff that gags him. He is getting despondent and I don't know what to do to help him.
RJM, I am sorry to read about your husbands problems from having oral cancer. Everyone responds in their own way to medications and their reactions to treatments and their after effects vary. Im very sorry to give you some bad news. Sadly some people lose their ability to swallow and are dependent upon a feeding tube for life. You are doing the right thing by taking him to the speech pathologist.
Im sure you will hear from Charm sometime soon. He is in a similar situation where he is not able to eat or drink anything. I use a feeding tube for about 1/2 of my nutrition as I cannot eat enough to sustain myself. I also use a pump and let the formula slowly run overnight. It is easier for me to do the feedings while I sleep since I cant tolerate the gravity or push methods.
rjm
I have also been unable to swallow at all since March 2009 and have been on a feeding tube exclusively for two years now.
Your husband could ask his SLP about VitalStim therapy - although that did not work for me, it has worked for many others.
I also use a tissue to just reach in my mouth and pull out the thick stuff after a rinse and spit. It helps to "gargle" and then cough it all up.
My wife made me an apron with a slit in the middle and a little strap so it holds up my feeding tube when I use it. You can use velcro to do something similar and he may be able to feed himself with one hand but maybe not.
Last but not least, consider getting a Vitamix (with medical discount) and you can cook your regular meals for yourself, or at least dinner for two, and then put his entire meal into the Vitamix. It will then be able to go down his feeding tube.
I'm down to just breakfast. lunch, snack and dinner feedings (all Jevity 1.5 except for dinner which is the Vitamix)
I'll post more tomorrow when I can think of better suggestions on his attitude and feelings, but there is life with this condition and this addresses the physical issues.
Charm
I'm always compelled to weigh in on these topics since I'm an SLP and gained great insight into swallowing problems as a result of my own treatment.
First off, has he had a modified barium swallow study (MBSS), when and what were the results? The MBSS is THE BEST ASSESSMENT POSSIBLE of swallow function as it allows us to see the muscles of the throat as we swallow - shows us if small amounts of food or fluid have the potential to leak into the lungs (called aspiration) Aspiration is dangerous because it can cause recurrent pneumonias - if the aspiration is especially bad then the prognosis for resumption of oral intake might be poor - if the aspiration is in small amounts then there may be the potential to strengthen those muscles so that his risk is reduced - Vital Stim is a very good tool for strengthening those stubborn throat muscles - however - it's use with head and neck cancer patients is somewhat controversial. I'd explore that more if your husband is a vital stim candidate before he actually begins.
If the problem is that he can't control the food or fluid in his mouth to get it ready to swallow, then oral strengthening and coordination training may be very helpful.
Since he's having trouble spitting then I assume he's having oral strength and coordination issues - depending how much his anatomy was changed by surgery and/or radiation then the oral muscles usually respond well to therapy. If his therapist has recommended oral exercises then he should be doing them several times a day! I got myself a little mirror and did them as I sat or even laid on the couch. Now that I'm up and about, I do them in the car as I'm driving.
Bottom line - his potential to eat again is very much dependent on the results of an MBSS- even if he aspirates he still may have potential - there's a lot that can and should be done for treatment before he accepts that he will never eat again. Be sure your SLP has a good amount of experience treating swallow problems - there's a wide range in clinical skill and it sounds like your husband needs a REALLY good SLP.
Please let me know if you have any questions!
Good luck to you both -I'm hoping for the very best!
Still working on how to word my advice on the feelings challenge but Jennifer is right about getting a MBS. Heck, I've had four already and failed miserably but then no SLP thought I was likely to based on the surgery on already maxed out radiation tissue then more radiation. But I spent a full 18 months of daily exercises trying anyway. It's sort of fun to watch the DVD of my last MBS. The barium goes up and almost makes it, then hides away in the variculae, swirls around & hides but just won't go into the stomach tube, lungs yes, which is bad.
Charm
RJM - I too found the barium swallow tests and concommitant speech and swallow therapy very helpful. I really feel for your husband, and for you. In my case the problem cleared itself up after a few months of exercises. I hope you can get to the same place. Thoughts with you.
david2
I wish I had something to add to the others for you. The barium swallow is a great tool . Good luck to your husband and to his caregiver. Got you in my prayers and thoughts.
RJM
here is a link to a forum I'm on for G tube patients with a post by a patient who also cannot feed himself or hold his tube, the problem your patient faces. They devised a syringe holder that they used to hold their son's syringe while he was being fed. They cut the top off a table lamp and attached a metal ring to the top of the lamp . there are pictures / Hope this helps
BD forum- syringe holder Charm
Hi Jen, I found your post extremely helpful. Tomorrow I have that barium test you mentioned. I started working with an excellent Physical Therapist last week who has given me tongue strengthening exercises to start with and has had me swallow apple sauce, a thinner orange sauce, water and has felt my throat as I swallow. After tomorrow, we will know more. She doesn't think I have a problem with aspiration. Can't wait for the results! I may come back to you with more questions, if you don't mind. -Michelle
Thanks very much for the link. This looks like something that may work for us.
Take care
RJM
Thanks for your kind thoughts.. I appreciate everyone's help and reponse.
RJM
He had his swallow test last week. No improvement over the last one that was done in August. There was slight Aspiration and they are going to use some stronger electric stimulation to try and stimulate the muscles. His speach patholigist seems to be aware of all of the various treatments and told me that this could be a life long problem for him. Waiting to see if the next set of electric shock treatments do any good.
Thanks all
RJM
Thanks so much for your tip on feeding problems. I will give this a try.
I am sorry to hear that you have similar health issues. I am only the caregiver, but I have seen the pain and frustration that my husband has suffered and my heart goes out to both you and your wife. When I say a prayer at night for my husband, I will include you.
I also gave my husband your tip on the spitting problems. He said the tissue was a good idea and he is using this to clean out his mouth after rinsing.
Take care RJM
Thanks for your insight and I will keep in touch regarding his progress.
Warmest regards
RJM
RJM
Thank you for sharing that my "tips & tricks" may be able to help. I can relate to your husbands pain and frustration. To be literally excommunicated from the social bonding activity of breaking bread is heartbreaking for both the patient and their caregiver. I hope your husband does regain his swallowing but trust me, it's possible to have a very good life even on a feeding tube forever. It's way too early to tell your husband's future so let's hope for the best.
Charm
This may be helpful to you. Im not sure if it is still going on or not. Contact Nicole at
[email protected] Swallowing Study
Is your husband taking anything by mouth right now? The presence of "slight aspiration" on MBS shouldn't fully preclude him from eating small amounts especially if he hasn't had a recent history of respiratory infections/pneumonia. Check with your SLP to see if you can be doing trials of safer food/fluids at home. If it's "safer" for him to swallow small amounts of apple sauce for example, with a posture (like a chin tuck) that increases the protection of the airway then your SLP may feel comfortable training you both to know what to look for so that you know if and when you should stop with the limited trials to minimize aspiration risk. The more he can use the muscles of the swallow the sooner he's likely to see progress. Keep at it - I consider "slight" aspiration not to be too bad of a thing - it may be managed and/or improved!
RJM
In addition to the SLP, a good prosthodontist may be able to help. Mine made me a "palate drop" since I could not touch the roof of my mouth with my tongue. It immediately improved my ability to "spit" out the mucous as well as my speech. I had a second one made a year later with some extra extensions designed to overcome the swallowing difficulties shown in my MBS but no luck, although it did improve my speech even more.
It can not hurt to have an evaluation.
Charm
RJM
I hope you saw Leslie's fantastic post of Roger Ebert's column on not being able to eat or drink but living forever on a G tube. Go to that link, print it out for your husband.
Also there was another link in that column to yet another blog entry by Ebert that had this to say
[quote]I mentioned that I can no longer eat or drink. A reader wrote: "That sounds so sad. Do you miss it?" Not so much really. Not anymore...Let me return to the original question: Isn't it sad to be unable eat or drink? Not as sad as you might imagine. I save an enormous amount of time. I have control of my weight. Everything agrees with me. And so on.
What I miss is the society. Lunch and dinner are the two occasions when we most easily meet with friends and family. They're the first way we experience places far from home. Where we sit to regard the passing parade. How we learn indirectly of other cultures. When we feel good together. Meals are when we get a lot of our talking done -- probably most of our recreational talking. That's what I miss.[/quote]
Here is the link to that other blog:
NIL by mouthNow I don't have to wrestle with the right words to share with you, these two blogs do it all. I hope your husband will like them
Charm
Hi RJM,
I'm also a Speech Pathologist and was looking at the site for one of my patients. I work with a lot of H&N pts and one thing that I thought was curious about your initial post was the comment that his left side was affected and so he can't do his tube feedings by himself.
I was wondering about the reasoning behind this? It's not too unusual for damage to one of the cranial nerves (XI) to cause difficulty with shoulder mobility but more general L sided weakness is not that usual and suggests that something else might be going on, such as a stroke. Has this been ruled out? This can happen during surgery and often doesn't get picked up during the hospitalization.
That said, it doesn't change the treatment plan much - swallow evaluations and treatment are pretty similar regardless of the etiology of his dysphagia, but it would potentially change the timeline. There is some spontaneous recovery after stroke and the rehab course of a stroke in conjunction with H&N cancer treatment would be longer and slower but not necessarily impossible.
Anyway, just another thought to add into the mix.
My best to you all,
Andrew Palmer, MS, CCC-SLP
Hi RJM,
I'm a three time 27 year throat cancer survivor having had three surgeries and radiation. I'm tubefed since 2002. My left arm is paralyzed (I was left handed) but I have just enough movement in my left hand to be able to hold the mic-key extension while I plunge with my right hand. So happy for that! I share this with you only to let your husband know that adjustments can be made so your husband can have the best quality of life possible which is what we all want with our situations.
Over the years my phlegm and saliva have gotten very thick. I am unable to swallow any of it. Because it is so thick it gets caught up in my throat and can't cough it out. My short cut to deal with it is to take a toothbrush and stick it as far down my throat as possible and literally scrape the phlegm out. And it comes out stuck to the toothbrush. I rinse with water before and after until I have to do it again which ends up being about six or more times a day. I hope the toothbrush shortcut works for your husband like it does for me.
Blessings,
Jesse
My father is not able to swallow liquids/juices for past four weeks.(he stopped taking solid food 1 year ago). He is becoming weak, and become so thin. Doctors had already stopped the treatment before 4 months saying unable to control cancer growth. We are following anti-cancer diet(Gerson Diet) and other natural way of healing cancer. Now, he stopped taking the diet.
The only final hope for me is to feed anti-cancer diet through feeding tube. Please help me on below questions on your experience.
I need these answers before talking to a doctor, what to ask them etc.
1) Which tube option is the best in feeding volume. G-tube or NG-tube(Ryle's)? We need to feed 6 times 200ml of carrot/apple juices.
2) Which one is simple to Maintain?
3) Once if cancer is cured, can we remove G-tube and start eating through mouth normally?
4) How often we need to replace feeding tubes?
5) What to do if feeding tube displaced from the body? We can insert it or need to go to doctor?
6) Can we take carrot juices, apple juices, semi solid foods through feeding tube?
7) Any more suggestions.