what CivillMatt is up to
Hi H&N membes and anyone else who is reading this. I stopped in to see my ENT for a (self-approved) 8- year post treatment check-up very recently and left with a big smile and a renew confidence in my future prognosis.
Let me tell you the conditions which spurred me on to go see him.
One, is a little cough which always bugs my wife to hear (bugs = true concern). I told her it was just a mechanism I have been using to loosen the phlegm and clear my throat as the way I used to (and the way most normal people clear their throat) is no longer available to me. The radiation has rendered my ability to hack up phlegm useless.
The second thing was the extreme difficulty I have with getting my tongue clean. I go through a whole procedure with the good old salt and soda mixture to clean and loosen all the gunk in my mouth and throat. Along with a variety of mouth rinses and mouth washes and of course tooth brushing and don’t forget the water pick.
The third issue was about how careful I need to be with swallowing food and how little bits of food seem to stick in the back of my throat (really it feels like a little food shelf at the base of my tongue).
Well, he looked at me and listened to all my problems and then he examined and felt my head and neck and scoped my tongue from top to bottom, held my tongue and made me say “EEEEEEEEE and said “you are fine, everything looks great and feels great and you are fine.
He asked “how long I have had the cough” and I said about 8 years. He said “the cough is normal and if it hasn’t changed in 8 years you are probably alright”.
He said I have hairy tongue and that it looks normal for a person who has had radiation and not to worry.
The swallowing issues I have are from the results of the radiation and swallowing will need to remain high on my list of things to be vigilant about.
I am sorry this drags on, but I do have minor issues I deal with from treatment for my stage IVa, SSC, BOT, 1lymph node, hpv+ (surgery, rads and Ebiutx), but my issues I can deal with and I still enjoy eating anything and everything I want which includes ice cream. Enjoy your life, your family and friends.
Matt
Comments
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Future Prognosis: BRIGHT!
This is excellent news, Matt, as I know your wife agrees. You'll recall that my dear husband went through a lot with surgery, chemo, and radiation for tongue cancer which metastisized to neck. He developed new cancer on tongue which required laser ablation and didn't properly heal. In any event, it's been almost two years since the major treatments ended, and, for the last six months or so, things have FINALLY gotten on the right track. His tongue has healed, leukoplakia is stable, and all CAT scans and check-ups are good. We are seeing the doctor at longer intervals. He's got a lot of mucus at night, but his swallowing is good, salivary function is good, and taste is maybe 85% back to normal. Worst remnant is neuropathy in feet which may be getting worse rather than better, and his neck is still pretty sore. It took a long time for his good cheer to revive..but iI can see it's still there! He enjoys ice cream very much. Best wishes to all H & N survivors and the ones who care for them.
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Thanks for the update, Matt
I agree with donfoo on the question about a hairy tongue. Really? Something else to look forward to? We all need to stay vigilant as the years go by and not become complacent - i.e. swallowing, neck stretching, etc. In general it sounds like you're doing well and that's good to know!
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NeuropathyProustLover said:Future Prognosis: BRIGHT!
This is excellent news, Matt, as I know your wife agrees. You'll recall that my dear husband went through a lot with surgery, chemo, and radiation for tongue cancer which metastisized to neck. He developed new cancer on tongue which required laser ablation and didn't properly heal. In any event, it's been almost two years since the major treatments ended, and, for the last six months or so, things have FINALLY gotten on the right track. His tongue has healed, leukoplakia is stable, and all CAT scans and check-ups are good. We are seeing the doctor at longer intervals. He's got a lot of mucus at night, but his swallowing is good, salivary function is good, and taste is maybe 85% back to normal. Worst remnant is neuropathy in feet which may be getting worse rather than better, and his neck is still pretty sore. It took a long time for his good cheer to revive..but iI can see it's still there! He enjoys ice cream very much. Best wishes to all H & N survivors and the ones who care for them.
That neuopathy in the feet really stinks. I have it in the hands, too, just not as bad. Gabapentin helps in general, but doesn't do much for the feet.
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Hairy tongue can be blackERomanO said:Thanks for the update, Matt
I agree with donfoo on the question about a hairy tongue. Really? Something else to look forward to? We all need to stay vigilant as the years go by and not become complacent - i.e. swallowing, neck stretching, etc. In general it sounds like you're doing well and that's good to know!
Incredibly, there is also black hairy tongue. It shares attributes of hairy tongue, with added bonus of telltale black color. On top of everything else, my husband had black hairy tongue, but in his case the condition did go away.
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werewolf yes, it appears so.donfoo said:hanging in there!
Matt,
Thanks for the detailed update and happy to hear about the checkup. Hairy tounge, really? That's a new side effect of treatment for this club. My mind conjures up a werewolf. lol
don
Dear Don,
Thanks for your comments. If you ever come up through Oregon I would like to arrange a H&N get together, a meeting of the minds you might say. I just missed seeing Phrannie last summer . Why she did not give me a jingle when she was visiting the Oregon coast with other family members will remain a mystery till the end of time. I will PM you some contact information on me, Just in case you need it.
Matt
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Hi Matt
Haven't visited the site in a while but glad I decided to pop in this morning. I am really glad your back to your abinormal self I certainly know what its like to start thinking a little too much about things that go on within myself. Hell, soon after my throat battle I developed pain in my leg and my first thought was aww f--k now I have leg cancer. No hairy tongue for me its bad enough I have to have my ears trimmed, I don't want to ask my barber can you do the tongue also.
My wife doesn't understand why I remeber dates and circumstances surrounding my three battles with cancer and thinks I should let them go. I tell her she will never understand nor do I want her to have the opprotunity to understand. Cancer has played a big part in transforming me to what I am today. Three wekks ago today I had to have emergency surgery for appendicitis. The surgeaon came into the emrgency room and said I looked at your medical record, you've been through the ringer, but don't worry we will have you in surgery in about an hour. I told him this is a walk in the park, there aint no way he could hurt me as much as the throat cancer doctors.
In all seriousness, I am glad your doing well. I've met quite a few people on the web I consider friends and you are one of them. One of the reasons I don't visit the site as much is because of people losing their battles which hurts more than the cancer itself. I still miss Jackie or Phrannie as she is known here.
And now I rambled on, only mine was true rambling maybe touching on too many subjects. You take care Matt.
Enjoy the day............I do...........every one of them
Jeff
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Matt's replyLogan51 said:Great read
Matt
Glad to learn of what your Dr. said, Matt. Hope you can avoid in the years to follow what I'm dealing with every day by being FT dependent.
Dave K,
We do go back a little ways on the H&N forum. You actually helped me to enjoy a “Big Dog” (the name of a large hot dog for sale in the parking lot hot dog stand of Jerry's Home Center in Eugene, Oregon) when I was struggling with almost ALL food. I was living happily on smoothies and small bite of all food for 7 months. That sounds strange now, but it was at one time my reality. Did I ever tell you about the time my parents wanted me to eat more and I “put a can of Crisco on the table and said “this is what eating s like for me right now”. I am not sure if it cleared thins up for them, but I tried.
Better luck moving forward,
Matt
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try this onERomanO said:Thanks for the update, Matt
I agree with donfoo on the question about a hairy tongue. Really? Something else to look forward to? We all need to stay vigilant as the years go by and not become complacent - i.e. swallowing, neck stretching, etc. In general it sounds like you're doing well and that's good to know!
ERomanO,
H&N members have discussed the appearance of this tongue condition before in the forum but, this was the first time I my ENT mention it. I think it looks sort of like wet suede leather. After my appointment, I adjusted my thinking about this condition to reflect more closely with what my doctor said, Which is everything is normal to what happened to me and do not worry about each of these items.. There is a lot to learn and get used to after H&N cancer.
Another doctor which is my doctor (GP) made an interesting comment (recently)about my constant dry mouth , my sometimes (everyday) over abundance of saliva and the fact that I have been drinking at least 10 glasses of water every day for the last 8 years. He said “I appear to be dehydrated’.. I think he is correct, that us how I feel, like I am dehydrated.it is much too late tonight to noddle on that one so I won’t.
Also, I tried to send you a NED card , but it got complicated and I soon forgot. Happy forever NED to you,
Matt
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Thanks for the NED wishes!CivilMatt said:try this on
ERomanO,
H&N members have discussed the appearance of this tongue condition before in the forum but, this was the first time I my ENT mention it. I think it looks sort of like wet suede leather. After my appointment, I adjusted my thinking about this condition to reflect more closely with what my doctor said, Which is everything is normal to what happened to me and do not worry about each of these items.. There is a lot to learn and get used to after H&N cancer.
Another doctor which is my doctor (GP) made an interesting comment (recently)about my constant dry mouth , my sometimes (everyday) over abundance of saliva and the fact that I have been drinking at least 10 glasses of water every day for the last 8 years. He said “I appear to be dehydrated’.. I think he is correct, that us how I feel, like I am dehydrated.it is much too late tonight to noddle on that one so I won’t.
Also, I tried to send you a NED card , but it got complicated and I soon forgot. Happy forever NED to you,
Matt
But you might as well wait until end of May. That will be my official 2 year checkup. If I am NED then I may pop open a bottle of champgne, then pour it down the drain because I don't really drink alcohol any more. But that pop sound might be worth it.
I bought one of those Brita filter pitchers and have noticed that I refill that thing several times a day, so that's a lot of glasses. I don't think it's becase I feel that dehydrated, just thirsty... or maybe it's just replaced my urge to have a beer in the evening. Tere are several bottles that that been in my fridge since Christmas because of what I said above.
My ENT shows me the scope video at each checkup. So far it all looks very normal. But who knows what it'll be like 6 more years down the road. If that hair is at the BOT then I don't imagine it feels like anything... and if that's the case then it's no big deal, right. I think ability to awallow and fibrosis of the neck would be more important [potential] issues.
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Matt, so happy for you and improving health
Matt, thanks for sharing your update with us. So happy to hear your health is improving and 8 years to the good is really great. It gives me hope and praying for us all to be NED and ailment, ache and pain free. God Bless
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On the downhill glideERomanO said:Thanks for the NED wishes!
But you might as well wait until end of May. That will be my official 2 year checkup. If I am NED then I may pop open a bottle of champgne, then pour it down the drain because I don't really drink alcohol any more. But that pop sound might be worth it.
I bought one of those Brita filter pitchers and have noticed that I refill that thing several times a day, so that's a lot of glasses. I don't think it's becase I feel that dehydrated, just thirsty... or maybe it's just replaced my urge to have a beer in the evening. Tere are several bottles that that been in my fridge since Christmas because of what I said above.
My ENT shows me the scope video at each checkup. So far it all looks very normal. But who knows what it'll be like 6 more years down the road. If that hair is at the BOT then I don't imagine it feels like anything... and if that's the case then it's no big deal, right. I think ability to awallow and fibrosis of the neck would be more important [potential] issues.
Once crossing the two year milestone, statically this ordeal is etched in your rear view mirror.
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What a Great Story
Very encouraging. I am over 9 years out and struggling a bit at the moment. I love reading your story and all the stories on here. What a fantastic group. Amazing when people come together to support each other and put aside any differences and find their common humanity. I am anxiously awaiting the results of my PET scan, my wife is even more so as I am not handling this well. Making here crazy. Not sure why this scan is making me so nuts. The odds are quite on my side and the doc is not overly worried. Maybe its all the general uncertainly in our country right now. Everyone be safe and stay well i need you all. Selfish of me I know but its true.
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