Hello. My father had a large tumor removed on the base of his tongue 11 days ago. I don't know how much of the base was removed, as my father doesn't want us to ask alot of questions, but I know it was larger than the surgeon thought it was. I would just like to know if anyone else with a tumor removed on the base of their tongue has had any success with swallowing again. He hasn't had a swallow test because he is afraid to do it. He says he is not ready. He has a trache and can talk fairly well all things considered. Any input would be welcome.
Thanks,
Rett
Rett:
Welcome to OCF. I dont have experience with what you are asking, Im sorry. If I were you, I would ask your fathers doctor about those things. Im sure your father is very sore from the surgery so it is probably really difficult for him to even swallow a sip of water. Does your father have a feeding tube?
A swallow test is something very simple, I have had one of those. For me, it made me kinda nervous since it was so important to me that I was successful with it. A swallow test is important to determine if your father is able to eat. Try to talk to his doctor. Asking questions is a good thing, your dad must be scared of the answers so he doesnt want to ask questions. An informed patient and caregiver is so very very important to his health.
He shouldn't have a swallow test (he will need to do this sooner or later to determine if he has dysphagia or aspirates liquids) until all the healing takes place from the surgery. This might be a couple of months. Anything before this will not accurately reflect his situation. These kinds of surgeries are very individual, and it would be impossible for anyone here to offer good advice on this, as the extent of the surgery is not known. It does sound like he has some other issues that might be emotional, related to his future capabilities. If you can get him on these boards, perhaps talking with others that have been through his situation might make him more comfortable with all that is going on.
Thank you Christine and Brian,
I have been reading these boards for about a week. And you're right Brian, my dad does have a lot of emotional issues going on related to all this. He has been extremely depressed and anxious since the surgery. We have been trying to keep his spirits up but it hasn't been easy. I don't know if he would enter this type of group because he would be afraid of reading something bad about his cancer. He's always been that way. It has been helpful to me though, reading how people have been through tough times. Thank you for responding, it has been a support knowing others have been through similar situations,
Thank you,
Rett
P.S. He meets with his doc in a few days, so hopefully we will get some answers.
I want to thank every single one of you for your words of encouragement and just having someone to talk to that has been through all of this helps tremendously. I am not very computer savvy and sometimes I get a little confused when I want to reply to all you wonderful people. If I don't answer, it's because I need to get more familiar with how this board works. Thanks for your patience. Claudia ----See, this message ended up where it shouldn't have...............oops.
Rett: I know what you are going through with your dad. My husband had 2/3 of his tongue removed on March 18 and still can't swallow. He gets very depressed also. He had a barium swallow test and he did not pass it. (More depression) We live in a small town and since they don't do all the tests that a larger city does, we are going to Pittsburgh on Sept 19. We have an appointment with an E.N.T. doctor who is a speech pathologist and deals with oral cancer patients that can't swallow. They will also run more swallowing tests..I figure maybe this will help. Hang in there and take a day at a time. This whole ordeal has been a nightmare and as the caregiver my heart just breaks. Try to remain positive even though it is very difficult. Love and Prayers are going your way. Claudia
Most of us have had some emotional issues as part of our experience in all this. I would venture to say that anyone who comes close to death, and perhaps for the first time truly believing that they will not be around forever, are profoundly changed by the reality of this simple truth. Many people, even into the late years of their life view death as a very abstract thing, something that always happens to someone else.
For others it is not death itself, but the potential for physical suffering that distresses them. And yet others it is the inability to accept that we may be physically less than we were before in many ways - altering our ability to be self sufficient, work, speak, eat normally, not be stared at by others for our differences.
Whatever the reasons for our fears, there is no shame in needing support, both from friends, family (even a cyber one as here on the boards), or from the chemical aids that we might be prescribed to control anxiety or depression. But for many, particularly men (we can pride ourselves in our ability to tolerate it all, to tough it out, to be stoic through bad times), these are hard realities to embrace. They take time to sort through and come to terms with. Shared experiences whether in a supportive group like this, or in a foxhole when the storm is coming, break down some of the barriers to dealing with that lot which we find ourselves in. Should you convince him to come here, others may give him hope.... that they have danced with the devil and are still around a decade later, that life is again rich, that while they never go away completely, the fears become controllable and manageable.
Thank you again Brian. Your words are very comforting. It has been a very difficult going through this with him.
And good luck to you and your husband, Claudia. I will pray for him that he is able to function better every day. I know how difficult it has been for you. Keep your spirits up.
Thanks again for all the words of support.
Rett
I'd say it was pretty common for folks not to pass the barium swallowing test at first -- I had my first one a couple of weeks ago and passed it except for a lack of cough response when small errant stuf got down as far as my vocal cords -- All of the staff were really enthused that I had done well and the swallowing therapist told me that I was the first success story in a while and they had all been getting disappointed -- I had cheered them up!
While I was still in hospital and had my trach tube open, they had also tried a swallow test by having me eat a variety of textured stuf with blue dye in it -- Then they had a respiration tech induce some coughing (light spray of a saline solution into the open trach) and blue dye started showing up, so I failed that one.
How are you doing Pete? Do you still have your trach in? I hope you are successful with your swallowing. My dad won't even attempt it yet. Good luck with everything. You sound like you're in pretty good spirits!
Rett
They actually took the trach hardware out before I left the hospitalbut it was a while before the stoma started to close. I kept a pressure bandage on it and pressed it when I wanted to talk -- I was sure glad when the stoma finally closed over and I could speak without a hand on my throat.
I am swallowing liquids and occasional food (saw a doughnut in food store and have to have it! Took a while and a lot of water to soften it to the point where I could swallow it, but it was good!! Don' let your dad force it; when it's ready, he will know.
Thanks Pete, that's good to know. It sounds like your recovery has been coming along steady. I hope you enjoyed the doughnut!
My dad may get his trach out next week. That will be a big milestone.
Have a great day.
Rett
Jim has had a feeding tube since april, 08.....he still can't swallow anything...he tries sipping on some water, but he still can't swallow...i wonder if he'll ever be able to swallow. when i tell him to try to do his exercices, he gets mad at me . what is the longest that someone has had a feeding tube then was able to swallow. It's been 6 mos and i worry that if he doesn't start swallowing even a little water, that he won't ever be able to. Can someone help me out here ? Claudia
Claudia,
I ended up in the hospital this past March because my throat had closed up completely - over a year after treatment stopped. I couldn't get even water down, but I had been able to before. A gastroenterologist dilated my throat, and I've had it done twice more since then. He couldn't dilate all the way all in one shot so each time it was dilated to a larger level, and I'm done now unless I have trouble again. Dr said this can happen as much as 2 years after radiation.
The procedure is a breeze to go through. You go to sleep, and wake up being able to swallow much better. There is no pain and results are immediate.
I don't know if your father is having the same problem, but it's a thought.
Best of luck to you both,
Lani
Sorry Claudia, I meant your husband, not your father. Can I blame that on my brain blips, too? Lani
Thanks Lani---When we were at the speech pathologist last month , I overheard the dr. talking to the nurse about a possible dialation at some point. I'll find out more next visit. Claudia I don't know what I'd do without this board. It's my comfort amidst this storm.
Rett. How's dad doing ? Let me know. I care. Claudia
Hey Claudia,
My dad is hanging in there. Unfortunately he's still not swallowing. He hasn't really tried to eat or drink anything and I'm really afraid if he doesn't he'll lose the ability altogether. He never did the swallow study because the day they wanted to do it, he was exhausted and nervous. He starts his radiation next week, which I think might make the swallowing situation even worse. My sister is trying to get a speech therapist to come to the house and evaluate him. We'll see what happens. I hope your husband has some good news in the next few weeks. I know what you're going through (and him). It's really hard to watch someone you love go through this.
Rett
I know that following my first extensive surgery and treatments I found it really difficult to drink any water not only from a cup but also through a straw. Having so much of my tongue removed that plays such a major part of movings things around my mouth I know how frustrating it is and how deflated it made me feel. I tried to sip and drink all sorts of different things and I found that I can drink a milk shake easier than I can drink water.
I mentioned this to my speech therapist who told me that that would be because water is a 'loose fluid' and because things like milkshakes are thicker I have more control over them in my mouth. On reflection that made so much sense - water just goes all around my mouth, I can't taste it or hardly feel it therefore I have hardly any control over it where as things like shakes I can feel and can control so much more.
It can be a very long slow process, even now I still have the same result with water as I did all those months ago.
Hope this helps a little
Karen
My therapist gave me a can of Hormel Thick & Easy. It can be added to any food or drink (including water), hot or cold, to reach the thickness you find the easiest (or at least the least difficult). He said it's tasteless, though you couldn't tell by me since I couldn't taste much then, anyway.
Also, I asked him why I could only swallow with my chin tucked. If I try to swallow with my head up, like from a water bottle, etc., it goes right down into my lungs and up into my nose. He explained about how the trachea & esophagus "sit" in the throat and how tucking you chin helps direct food & drink by changing the position. I don't really know how to explain it as well as he did, because he used his hands to demonstrate and you can't see my hands.
I'm sure someone else here can probably do it, though.
Lani
Here's a description of swallowing and you can see that leaning the head back tends to open the various flaps on the front of the neck leading to the lungs.
http://www.answers.com/topic/swallowing Lani, thanks for the Hormel Thick and Easy tip -- I'll be looking for it.
Pete,
Well, there's that dad-blamed shelf I keep talking about! Thank you.
I just pulled out my can of Thick and Easy. It's distributed by: Hormel HealthLabs, Inc. They have the phone number & web site address on the can if you have trouble finding it. It gives instructions for both full and clear liquids to nectar-like, honey-like, and spoon-thick. Also up to mashed potato consistency, if needed.
Hope it helps. If anyone wants the phone or web address, just ask.
Lani
Hi Claudia,
My husband is dealing with the same problem..he wonders if he will be able to swallow also..only ice chips . It's been since Oct 2007, its been a year since his treatment & still has peg tube. Has had swallow test, "food stops at top of esophagus. His esophagus is still inflamed , so they have talked of esophagus dilation. Next month he has appt. with his ENT doctor..we will be discussing that subject. We've been told it could take long time to swallow , if ever. I don't like to talk to my husband about negative answers..but would like to hear from others..if some good progress.
Barb G
I have been reading the posts on swalloing thick VS thin. The thicker the liquid or whatever i try to swallow,the more problem I have. I either have milk or water with me at all times. I have to use my fingers, to dislodge things from the roof of my mouth and around my gums. Wonder if i'm the only one with problem ?? I tried a peanut butter cup yesterday and boy did me and it have fun. Didn't think I was ever going to quit trying to choke.
Barb,
My throat closed up completely 17 months after rad ended. I was put in the hospital because I couldn't get anything at all down, and the peg tube was a distant memory by then.
They called in a gastroenterologist who dilated my throat the first time. I was able to begin eating again immediately. He couldn't stretch it out all the way at once, but had to do it gradually. I've had my throat dilated 2 more times and now I'm done unless I have a problem.
Getting your throat dilated is absolutely no problem. You go to sleep, and you wake up. That's it - no pain, and immediate results. Of course I have other eating and swallowing challenges, but not this one anymore. I don't know how much of your husband's problem will be fixed by having his throat dilated and how much is for other reasons, but please don't worry about this proocedure.
Lani
Does it ever end ? I'm sick to my stomach and Jim is despondent. I haven't seen this problem on the board so I am anxious to hear from anybody who is familiar with this. When Jim had his surgery in March, all of his teeth were extracted. He now has no teeth. Anyway a few months ago, he said that his bottom gums on the right side of his mouth looked a little different. There were a few white spots and it looked like new teeth were trying to come through. That's the only way I can describe it. The dr. looked at it and said that it was normal for it to look that way. Now, Jim noticed that in that same area, the skin on the gums looks inflamed and a little puffy and weird looking. I wonder what this is ? We are going to our ENT dr in Pgh who did the orginal surgery. We are both afraid of what we are going to hear. He won't talk and it's so frustrating. He's so so depressed. As i've said before, his petscan came back and it looks like mets to the lungs and the doctor so rudely blurted out that he has less than a year to live. Every since that diagnosis, he stopped living. He won't exercise, he won't talk to me and the list goes on. We did go for a 2nd opinion and this dr. said he never tells anybody how long they have to live. He did say though, that he does not recommend a biopsy and for us to wait for our 2nd petscan and he would recommentd taxall. The brutal doctor mentioned erbitux or methotrexate to prolong his life by a couple of months and Jim said "no". I don't know whether to stick with 2nd opinion doctor or MISS BRUTAL the first doctor. I'm sorry for yakking but I'm a wreck. Can someone shed some light on some of the things I've mentioned...Thanks. Claudia PS: Don't know what I'd do without all of you....
Claudia...I am so sorry to hear about your situation...I am the patient and my husband is the one who doesn't talk and I can relate to your frustration. I had all of my teeth removed and months after I had white spots in my mouth went back to the dentist and he told me they were bone spurs or chips if you may they worked themselves out...I don't know if this relates to your husbands problen with his mouth the gums around the white spots got inflamed and red until they worked themselves out...they say third times the charm is there anyway you can get a third opinion?? Best of luck and I will keep you in my thoughts
Dianne
Thanks Di---Got up this morning and immediately ran to my computer to see if anyone was familiar with the gum problem and there you were....Thank you. I feel a lot better right now. I'll let you know what the dr says. Claudia
Claudia-Neil will be starting Taxol on Monday. Even though it is not a cure, it may buy some time. I'm so sorry Jim is so despondent. Can your son talk to him? Maybe he needs to be told how much he is needed. I'm sure you've done that youself already. The doctor of doom needs to be told how much trouble she caused with your husband. Maybe she'll be more sympathetic with the next patient. Our doctor at Sloan is the most wonderful person when it comes to hope. He said as long as Neil is willing to continue, he will help him. He is not giving us false hope but just SOME hope of having some more time. We know he can never be cured and that we don't have much but at least it's better that totally giving up.
Hve you thought about help for yourself? You know me-I totally understand what you're going through. I do feel that Neil's amazing attitude is helping me also. Please call me if you need to-you know the number.
Sue
Went to Dr in Pittsburgh who did jim's surgery in march. The growth on his gum looks suspicious so a biopsy was done so we are waiting for the results. Also, he will have a petscan done within a week or so. The drs. in Pittsburgh want him treated there instead of here in our hometown of New Castle. We don't know yet if they can do surgery or just more chemo and radiation. I don't know how much more he can take. I can't believe how fast that growth just popped up. It looks like a mushroom. We'll be canceling his speech therapy til this is all taken care of. I'm trying to stay positive, but it's so hard.
I am sorry that my experience didn't help much and your white spots are more than what I experienced. I am also so sorry about how things are going...All I can do is keep you and your husband in my thoughts and prayers. I do understand though about staying positive...I have (knock on wood) been very lucky so far but continuously am on the look out for signs...hopefully they can catch this and do something for your husband. Sue is right though attitude can help...
Dianne
Claudia,
I'm so sorry your husband is having such a rough time. It really is a tough cancer and treatment. My dad just started radiation and is having so many problems, vomitting, phlegm, pain, thrush.....
Do you have anyone helping you? It's very hard to take care of someone by yourself. My dad is living with my sister, but we all (six siblings) go over there and try to help whenever possible. She has the majority of the burden, however.
I will pray for your husband.
Claudia- How are you doing? I see you called my cell the other day but i missed it. It really is a working number even thought it says it isn't. I try you later.
Sue
Brian you are a wise man. One of my biggest difficulties is dealing with how different my life will be from now on, but I try to focus on being grateful for the opportunity to have such a different life. You are correct about having to face mortality - it is not something that a lot of us have thought about.
Rett I had 80% of my tongue removed in Sept 08 and I am able to swallow - how well depends on the thickness of what I am trying to swallow. My therapist told me that if I don't keep trying to swallow I will lose the ability to swallow and that it will get better the more I try. I don't know the truthfulness of this, but I am able to swallow thicker substances the more I try. Maybe that will help spark some interest with your dad.
Oh I can really get your take on how life is different. I went through everything, lost my jaw, almost died many times, and now
I am back to work and trying to prove to them that I am worth what they are paying me. I am a manager, former teacher at a Community College, ( don't know how I got to where i am, well, my husband)
but boy, years ago, I lived in a small town, union workers, my
boss promoted me to manager and all the "men" in the back were saying "yeah, I guess I can work for a woman". I laughed to myself and just stood my ground and demanded perfection like a "man" would do. Now, with Obama, I say, well, it's a good thing I was not black also. Imagine how far everyone, woman, caucasions, african americans, all others and all religions, in USA today have proceeded today. We have all come so far.
I am proud of us the USA.We have come a long way, now if we could
come a long way with cancer and fight this stuff and learn about it and spend money on research-wish we could do better and learn
more.
I keep trying- I look different and keep "going to war" with trying to act normal and get things done and people look at me and I can tell they are looking at my jaw, my disfigure, but I look them square back in the eye and do my job. I go the extra mile and get it done. And then some days I go home and sit down
and have a cry cause I am so different. Oh, I wish I were just a woman again and that's all I had to deal witH!!!
Should I send this to a woman's movement committee?
Just kidding. Wish that was all I had to worry about anymore.
Thanks for listening.
a