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optimisticihope
Posts: 3
Joined: Apr 2009

I was diagnosed with Stage IV Squamos Cell Cancer of the tongue and some lymph nodes in January. I had 36 radiation treatments and 2 chemo. On June 10 after a CT scan I was declared cancer free. The problem is, 5 months later I just don't feel good. Constant tiredness, a very sore tongue and occasional nausea. Still have my feeding tube, the only thing I can tolerate is ice water. My pillow in the am still has drainage and this morning there was blood. Also have almost a constant lower back-ache. I take a pretty good walk every morning and do routine housework (I am a 67 yr old woman). Just seems like I should feel better by this time. Very Frustrated!

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Let's get the most important things out of the way optimisticihope: congratulations on your survivorship and now, as well, on your pronouncement of being cancer-free as recently as two months ago! That is outstanding news! I hope you did a happy dance after getting that news. We must, and I do not mean just cancer survivors by any means but all of us, we must grab our reasons for, our moments of, ecstasy when we can and where we can, and believe me, an NED (No Evidence of Disease) is absolutely wonderful news!

That said, I am also a survivor of squamous cell cancer (stage III, in my case), but I had surgery to replace half of my tongue, along with a radical neck dissection, in addition to the radiation and chemo you speak of, so my story is a tad bit different.

With that in mind, please know that it seems radiation does not stop cooking, so to speak, as soon as the treatments stop. There is some disparity among people I talk to here and elsewhere about how long the stuff continues to cook following cessation of treatments, but consider that it is probably a month, maybe two, some argue longer. In any event, look at your end of treatment day as at least a month after your actual radiation treatment stopped (ask your radiation doctor, in fact, and let us all in on that... I have a feeling the answer will have to do with dosage, frequency, body weight, location, and things of that sort, of course, but still, it is worth the question.)

Since you did not have surgery, it is troubling to me (and I am just another survivor, mind you) that you are not yet beyond ice water orally. Typically, we are told that water is the hardest thing to get down (that we are apt to breathe it rather than swallow it (aspiration, I believe it is called), thus the barium swallow tests).

The one reason I can think of for your problems swallowing would be scar tissue resultant from the radiation. (I have scar tissue from both surgery and radiation.) Some of this, maybe even ALL of it, may be corrected by dilation of the esophagus, if you are up for that, and if the docs think it will help.

(At this point, I must point out that you should always bring these sorts of issues, fears, questions, difficulties, to the immediate attention of your doctors.)

Re the drainage, I am not sure what you mean by that. If it is phlegm, well, you might need to get used to that for awhile. As for the blood, some folks might express concern, but from personal experience (remember, I had the surgery too), I have had some blood issues. Your gums, the roof of your mouth, your tongue itself, all of these may cause bleeding, especially if you are practicing sound and diligent oral hygiene. It happens.

If this is of concern to you, and if you are interested in swallowing more than ice water, I would recommend the following:

Ask for a referral to a gastro doctor, who might be able to take care of two birds with one stone: an endoscopy would reveal any gastric sort of bleeding, which should be of some concern, of course, as well as enlighten you as to the possibility of dilation, at least in the esophagus.

It does not hurt, by the way, the endoscopy. They put you under, no matter what they say. I was singing Elvis, and then I was waking up to requests for more Elvis :).

In any event, you are fairly early on in recovery, my friend, so if it is not simply keeping you up nights and bothering your days, you may want to hang in there while definitely mentioning it to the very next doctor you see.

Again, my congratulations for your survivorship and for your NED announcement!

Best wishes to you and your family and friends.

Take care,

Joe

optimisticihope
Posts: 3
Joined: Apr 2009

I really appreciate your comments. I'm especially interested to find out about the dilation of the esophagus. A few more things to let you know about. It took a year before I was diagnosed, during that year a neurologist told me I had ALS, primarily because my tongue was partially paralyzed. After a visit to UCLA I found out no ALS but the tumor had caused the paralysis. That makes it very difficult to talk and also to get food to the back of my mouth. I have some movement and it may improve a bit. I have also been going to a lympodema therapist. She has successfully reduced the swelling around my mouth and my throat, on the outside. I've also had the barium swallow test showing some aspiration when I swallow but my speech therapist has shown me a technique to keep the water from going into my lungs. All that being said, it feel like my throat has something extra in it, maybe as you said, scar tissue. I can swallow thinned pudding, yogurt, anything liquid, it just takes a very long time. I'm thinking perhaps alot more work is in order, I also have a device my speech therapist recommended that is supposed to stretch the jaw, a craniomandibular device. I haven't been so diligent in using it, my bad. I also had my lower teeth removed prior to radiation and it makes the deviced harder to use. I'm curious about you having half your tongue removed, that wasn't suggested to me. Now my ENT says he really can't do much more but I see him again in Oct. Can you talk plainly? Did you have a feeding tube? How long?

Thanks,
Kris

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

Kris,

With respect to dilation, I believe you would first have to undergo that endoscopy I suggested, which is a procedure where they send a television camera (I'm not sure if it is Hi-Def or not :)) down your esophagus and beyond. As indicated before, this will serve at least two purposes, the first of which is to find any possible bleeds, even very small ones, and the second of which would be to evaluate your candidacy for the dilation.

In my case, when the gastro folks were done, they said, no bleed and we aren't the ones to do the dilation, as your esoph is fine...your problem with openings is closer to the surface so go see ENT Man.

Or something like that. We are working that out even as I write.

I do encourage you to look into that.

As for the therapist, I am excited for you! I had both a speech therapist AND a physical therapist (PTs who work with us are few and far between, a new breed, apparently), and frankly the PT did more for me, I believe. The massages, the exercises with my tongue and jaw and so forth were much more valuable than what the speech therapist provided, although she was also important.

Re devices, I was advised that two popsicle sticks work very well at helping to increase and maintain a sufficient opening while exercising the jaw, but, like you, I spent some bucks (well, my insurer did) on a device to help me with that, and, like you, I have been remiss in using it regularly.

You really do need to use that thing regularly. It will help you to avoid the eventual closing of the mouth due to atrophy (I forget the name of it...tripnosis, something of the sort), will encourage you to chew, and, when you get your dilation issue fixed, will help you to be better prepared to start taking in regular foods!

But you know that.

As for the tongue removal, I had half of my tongue, the right side, replaced with tissue and muscle and even nerves from my left arm. I was advised at the time that if I chose to do rads and chemo instead and the cancer came back, they would not be able to then do the surgery, as the rads, in particular, would have done sufficient damage to the tissue that it would not be a viable option.

I opted for the surgery. Apparently this was not an option for you, and apparently, there are a great number of folks who either didn't get the option or decided against it.

In any case, I can speak, but with a slur that comes and goes, although I am intelligible and can hold perfectly fine conversations almost all of the time. (Sometimes the fluid build-up becomes an issue.)

I can also eat now, including, just yesterday, a piece of steak, although it took quite awhile to get that chewed up sufficiently to get it past the censor that is my small throat opening. And I still have a tube, now nearly 4 years after diagnosis, although the next time it falls out (it has fallen out twice :)) I will probably try to go without it.

And, to be honest, I have been lazy in that regard, too, as, getting back to a point you made about how long it takes to eat even what would seem to be easy things to most folks, I often grow frustrated with the time it takes to get stuff down and find the tube easier. Don't let that happen to you, Kris.

Hope this helps. Hope it does NOT discourage you! I am one lazy dude, so don't use me as a template for your future!

By the way, welcome to the club. It is a crummy club, due to membership requirements, but the members are outstanding folks! Take advantage of all it has to offer.

Take care,

Joe

BeenThereDoneThat
Posts: 29
Joined: Jul 2009

Kris,

Joe is giving some great advice. I had surgery, radiation, and chemo. Partway thru the radiation I began to have difficulty swallowing. At the end of my treatments they told me to wait and see how things heal. For me, not so good. Food was constantly 'hanging up' in my throat, and I had to chew things forever (and it took me a long time to eat.....no one wanted to have lunch with me!!!).

I went for a barium swallow, and they said that I had a benign esophogeal (sp?) stricture.....I was happy to hear the word ' benign'!!! The radiation had done it. I went to get an esophogas dilation. It was a piece of cake! They gave me twilight drug, and I don't remember a thing. It worked. They told me that my opening was the size of a straw, and he was able to triple it! I have been back for an additional 'stretch', so in 5+ years I have only needed 2. I eat anything I want, as long as I have water and chew 'like my mom taught me'.

Another cool thing was that they also did a full endoscopy of my esophagus, and hearing that all was OK made me feel a lot better. He also checked out my throat to make sure all was well.

Good luck.....you'll be fine. A lot of people are pullling for you.

George

optimisticihope
Posts: 3
Joined: Apr 2009

It makes me feel so much better to have all these comments. No one can understand like another who has similar problems. I'm going to the lymphedema therapist this week and will see what she thinks about the esophagas dilation. Maybe I'll call my ENT Dr. also. I look forward to staying in touch.
Thanks!
Kris

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