Women who don't have BRCA mutations could have other high-risk genes that affect treatment choices
by Paulette2 on Fri Sep 16, 2011 05:44 PM
I am caretaker for my 73 yr old husband who is a stroke (2000) and scc (floor of mouth & tongue 2002) survivor. He has through the years experienced declining swallowing problems. His jaw broke in 2005 and the surgery to replace it did not work. In 2007 started running fevers and having chills which we finally figured out was because he was aspirating. His epiglottis does not close fully. He is now on a peg tube permanently (has had 2 previously for a while). Was wondering if there is anything that can be done for the epiglottis problem. He brushes his teeth 3 times a day and has a suction machine that he uses but his mouth secretions are getting into his lungs and causing pneumonia quite frequently. He has a slimy film in his mouth and coughs up large globs of phelm after he gargles. Would appreciate any information or suggestions. Also have a note under oral cancer section.
Paulette & Bob
by Sdurnell on Sun Sep 18, 2011 06:23 AM
Would Bob be able to learn not to swallow at all, but just to spit out any saliva? That's what I have to do because my throat is too swollen for me to be able to swallow anything. I rely on a feeding tube for everything.
My epiglottis is also on the blink. So when I try to practice my swallowing exercises with a little water, I often aspirate too, and right now am on a course of antibiotics for the pneumonia that showed up on my last CAT scan (much better than cancer).
So I just carry lots of tissues with me everywhere and try to be discreet about using them if I'm away from home.
Best of luck to you both. I hope you are able to solve this worrying problem.
by Paulette2 on Sun Sep 18, 2011 07:00 PM
Sounds like you also have trouble with the swallowing. We can really relate, it's no fun. Just never know when the aspiration pneumonia will show up. Don't know how long a person can keep doing the hospital, antibiotics routine without it sapping all their strength. Bob's doctor now has given me an antibiotic to keep at home so that as soon as I notice him getting congested and running a fever I can start treatment so that we can keep him out of the hospital. He also takes nothing by mouth. I saw something on the internet called "Vital Stim Therapy" and am going to look into it to see if it can help Bob. They stimulate the muscles with electricity in order to get them to work. Would be great if they could get the epiglottis to close. When Bob had his barium swallow test which he failed they also did something to see if his vocal cords were working properly and that came back good. I hate to see him have to struggle with the pneumonia. Let me know if you have heard of this therapy. Much thanks for your information and we hope things improve for you.
Paulette and Bob
by REDVETTE on Mon Sep 19, 2011 04:50 AM
My husband's epiglottis is damaged from rads. He has had the "vital stim" you speak of through swallow therapy. It seemed to help. He was on a feeding tube totally for about eight months - he couldn't swallow anything - not even his own saliva. After many many hours of swallow therapy and 13 dilations he is able to swallow enough to sustain his weight. It has been a long road and still many issues are formidable. He, too, aspirates some. Was in the hospital with pneumonia last Spring. Docs monitor him closely for aspiration. This is a tough road - stay positive! AND research and "pull out all stops" as far as any treatment available for your husband. Hugs and prayers!!
by Paulette2 on Mon Sep 19, 2011 05:39 PM
Thank you for your reply. I am going to call the hospital today and see if I can get more info on the "Vital Stim Therapy". Did they do any tests like barium swallow to see if the therapy helped his epiglottis close? Also did the doctors give you any tips on how to prevent aspiration? I watch him like a hawk for the first signs of congestion or fever. Also have a stethoscope to listen to his lungs. It seems like he is getting infected with the pneumonia bout once a month. They think it is from the saliva he is swallowing. He takes nothing by mouth. We do have the top of our bed raised and he brushes his teeth 3 times a day plus gargling to bring up any phelgm that he can. He does have other medical problems but they are being controlled. This is the one that really zaps his strength and sets him back. Is cancer free since 2002. We have just recently moved and have gotten new doctors who seem like they want to get to the bottom of this. Hope we all can find a solution. Thanks for your information and we hope you and your husband better days. We will keep you in our prayers.
When you track a discussion, you will get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to track this discussion?
If you stop tracking this discussion, you will no longer get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to stop tracking this discussion?
We care about your feedback. Let us know how we can improve your CancerCompass experience.