How many with Zero Saliva & hypothyroid
I was DX in 2016 with what they thought Stage 2-3 SCC, HPV 16+, NO lymph involved on skin only where left tonsil once was. Thought base of tongue & possible base of lung. Tongue & lung ruled out right away. So basically Stage 1, Nicole to quarter size patch of skin would get red when scoped or My allergies would make Me cough. Every Reg Dr I saw I asked about it, even dentists, nothing don't worry about it. Traveled Europe, ate drank, smoked felt great, high energy, walking sometimes 8 miles daily, eating, no stomach problems but went to ENT for allergies, he didn't like it so took a biopsy. Cancer, than took another biopsy to test for the HPV. Positive 16+. He referred Me to 2 different Drs at Centers here in FL. Was decided since had for 3 yrs to start ASAP was never able to research or get second opinion at bigger, better Center like I know about now like MD Anderson, moffit, Mayo with better Drs & better equipment. When I saw Radiation machine I freaked looked older than 20 yrs when I was in Radiation Schooling at major trauma center in St Louis & this was suppose to pinpoint target Area. Gut said No. Always listen to gut plus his lack of educating Me & side effects was null. Yes, the burns, maybe feeding tube down the road but not knocking out & frying Salivary Glands & Thyroid. Met Chemo Onocoligist, seemed nice but once again pushing to start immediately the full Monty of treatment 7 weeks with Chemo once a week for 7. Hopkins has since found that HPV + Throat only needs half of the usual. Well long story short was badly over radiated & by yr 3 Saliva after a surgery to open ducts that were horribly scared it was dried up, desert dry 24/7, Hypothyroid started around yr 2 -3. Meds have made Me sicker, lack of any saliva has limited highly My diet & don't get full nutritional food. Taste buds shot & nasal smell, so all fish smells rotten, my GI is a total mess on 3 Natural meds ( from Natural Dr) just to eat & keep food in even shakes. Chemo/Thyroid thank you. I miss salad, I miss My fav fruits & vegs, always a ton of mucus, go thru Kleenex like water. Speaking of water, Chemo also gave Me a life-long low Sodium levels so no water, clear, no taste Propel only for the enzymes or I will get water poisoning if I drink too much water. Already had 1 stroke, all this including treatments. Anyone else facing this.
Comments
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My Thoughts and Wish I Could Help
I must say it seems you are in a constant battle on many fronts. It is a job for you just to eat enough and stay hydrated. And on top of that, you say you are limited on a nutritional diet. Thyroid problems. Taste buds, smell, GI tract messed up. Other assorted after affects. I can see why you get frustrated, to put it mildly. I can’t relate to your condition exactly but do deal with some of the after-effects you do but not on the level you do. My heart goes out to you and I pray you have the strength to deal with each day and find the hidden blessings in each day. One thing you give to us and new ones signing on here if your gut feeling isn’t right to get another opinion and make sure the treatment plan is not overdone. I’ve read your posts here on the forum before and it seems you have suffered the most extreme effects from your treatment and are in a situation that is in a realm of its own. Hopefully reaching out again you can find someone who shares your situation and can offer some help-Best wishes-Take Care-God Bless
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I guess so
Couple years after I was done with the C & R (2009) I had a visit with Rad Dr. and she said they have a new machine! Know the one that zapped me was down 2 times during tx, and somebody from Chicago had to make the drive across state to fix. So, a major C Center likely would have had a better Rad machine.
And yes, I also wished I had gotten a 2nd opinion from the U of Iowa, but was under the impression the Drs. were connected to them already- said they were part of the U of Iowa group. Then, in 2018 I read in the paper they finally did join the U of Iowa C Center group for 2nd opinions, etc. I did drive myself to the U of Iowa 1-1/2 years after tx to visit the Head Dental Dr. at the University Hospital. He couldn't believe they didn't have me on flouride trays, saying that's been a standard, there, for over 25 years!
For me, my mouth was a trainwrech, being NPC, and saliva glands took a major hit: what saliva I have is like a thick white foam.
Thing is, I was unknown Primary so I got zapped in 20 places/session with the most (68Gys) for some unknown-to-me reason applied to the base of my throat...leading to scar tissue growth that resulted in an Aspiration problem that resulted in my being Feeding Tube dependent since 8/6/19; AND, the danged foam saliva is more of an issue now because I don't want it in my lungs, so I am doing deep coughs and spitting so much that I carry a spittoon in my car, and any place where I will be for a length of time.
As for the thyroid, that was checked-out because of the temperature fluctuations I was having. Test said I was marginal, so Dr. prescribed the lowest dose of Levothyroxin, which I took for some 3 years, but have now taken myself off of and just live with it. My normal body temp, post-tx, was 96.4 for some 5 years, and 97.4 since. Thermometer confirms I am right when I feel body temp varying.
Did not have any GI tract issues post-tx, so we differ on that side-effect.
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Wbcgarusswbcgaruss said:My Thoughts and Wish I Could Help
I must say it seems you are in a constant battle on many fronts. It is a job for you just to eat enough and stay hydrated. And on top of that, you say you are limited on a nutritional diet. Thyroid problems. Taste buds, smell, GI tract messed up. Other assorted after affects. I can see why you get frustrated, to put it mildly. I can’t relate to your condition exactly but do deal with some of the after-effects you do but not on the level you do. My heart goes out to you and I pray you have the strength to deal with each day and find the hidden blessings in each day. One thing you give to us and new ones signing on here if your gut feeling isn’t right to get another opinion and make sure the treatment plan is not overdone. I’ve read your posts here on the forum before and it seems you have suffered the most extreme effects from your treatment and are in a situation that is in a realm of its own. Hopefully reaching out again you can find someone who shares your situation and can offer some help-Best wishes-Take Care-God Bless
Thank you so much for your kind thoughts. Yes, it is a battle daily. Just getting over a cold I've had for 3 weeks, even went in to be tested for flu No just simple cold. As for hydrating I can drink Clear Propel, no flavor I have to order special since stores run out constantly. Can't drink Water due to getting water poisoning & big drop in My Sodium level which Chemo caused. Was normal when I started now at a much lower number. It scares most Drs but My new abi-normal life. Finding Drs don't seem to want to listen to patient but do what they want. Gut tells you they don't care about you, leave & get new which I'm in the midst of doing. My thyroid dose so off caused severe depression. Finally got new Internist & he's at least listening, lowered dose at My request and depression really eased up, can sleep again, still losing weight but not enough food. But I know many badly Overradiated & Suz on this forum has horrific side effects from it that can't be fixed. We Message daily to check in. We allow each other to vent since our family not very understanding but We can. So again, thank you for your thoughts & understanding. Oh I miss Phrannie51, she was a ray of sunshine & breath of fresh air. Such a help in My yrs battling these side effects so soon when started out well. She is so missed.
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Dave KLogan51 said:I guess so
Couple years after I was done with the C & R (2009) I had a visit with Rad Dr. and she said they have a new machine! Know the one that zapped me was down 2 times during tx, and somebody from Chicago had to make the drive across state to fix. So, a major C Center likely would have had a better Rad machine.
And yes, I also wished I had gotten a 2nd opinion from the U of Iowa, but was under the impression the Drs. were connected to them already- said they were part of the U of Iowa group. Then, in 2018 I read in the paper they finally did join the U of Iowa C Center group for 2nd opinions, etc. I did drive myself to the U of Iowa 1-1/2 years after tx to visit the Head Dental Dr. at the University Hospital. He couldn't believe they didn't have me on flouride trays, saying that's been a standard, there, for over 25 years!
For me, my mouth was a trainwrech, being NPC, and saliva glands took a major hit: what saliva I have is like a thick white foam.
Thing is, I was unknown Primary so I got zapped in 20 places/session with the most (68Gys) for some unknown-to-me reason applied to the base of my throat...leading to scar tissue growth that resulted in an Aspiration problem that resulted in my being Feeding Tube dependent since 8/6/19; AND, the danged foam saliva is more of an issue now because I don't want it in my lungs, so I am doing deep coughs and spitting so much that I carry a spittoon in my car, and any place where I will be for a length of time.
As for the thyroid, that was checked-out because of the temperature fluctuations I was having. Test said I was marginal, so Dr. prescribed the lowest dose of Levothyroxin, which I took for some 3 years, but have now taken myself off of and just live with it. My normal body temp, post-tx, was 96.4 for some 5 years, and 97.4 since. Thermometer confirms I am right when I feel body temp varying.
Did not have any GI tract issues post-tx, so we differ on that side-effect.
Thank you for responding and I feel for you. It really is so frustrating when your trying your best to get better. Sorry they could not pinpoint & you also sound over treated. I was pretty simple, straight forward. Basically Stage 1 since 2 places they thought turned out nothing so than change treatments to address what I really have. SCC, HPV 16+, no lymph involved, quarter size flap of skin ( no tumor) just on skin where left tonsil use to be but got The Full Monty, 7 weeks 5x daily Rads on ancient machine and 2 Chemo drugs 1xweekly for 7 weeks. Was burned from sinuses down to collar bone, both sides. Asked why right when on left, some excuse fro Rad Dr & We are going to kill this. Of course Rad Center gets Class Action Suit & can afford a new machine, have not seen a dime back from over- payment for this mess. But another notch in their belt, killed Cancer & don't care if you have No quality of life & side effects that are so numerous but hey your alive. No I'm a shell of Lisa, Lisa does not live in this body anymore. So just buck it up & get over it, a lot worse than you. How's that for empanay & compassion. Never liked him, no education, nothing about dental but see Dentist to tell them you have it. No education what so ever. Why I preach get 2nd even 3 opinion before you jump into barbaric treatments. I had it for 3 yrs prior ( the red patch), every Dr, Dentist I saw said nothing, irration, felt great, good test results but this is My outcome. Irreversible damage at this time. Not enough money or research for this deadly Cancer. Not fair. No education on future side effect that just keep coming, and coming. Just want your money & killing it so their numbers look good. Much luck to you, may you please get better & back to living your life. We're young We deserve some Golden Yrs. Ive already had 1 stroke & kidneys will get worse. Constantly at Dentist, I pay for, to up keep My teeth & jaw for as long as I can. Hope eventually you can progress off feeding tube. And by the way your saliva is what is basically called Chemo saliva. When I got Saliva duct surgery at a better Center he told Me that was all that came out. Yucky tasting & full of mucus. My ENT & Dentist agreeded. My ducts were so badly scarred the ENT in Baton Rouge was very surprised, worse he had seen. Stents had to be put in but at that time, going on yr 2 still had saliva stuck in gland & could not get out but now I make nothing it appears. So can't get them reopened. Can't get blood from a rock as they say. Really My thought are with you to get better & better. Good luck to you and I'm here to listen any time you need to talk or vent. They say how new & non- invasive & do a team approach but it appears from records, only communication was between Chemo Dr and ENT, but nothing from Rad Dr. They lie to keep you for the money since if you go to better a Center you will leave, so keep you in the dark, at least here. I can't even spit so I go thru tons of boxes of Kleenex a week to get rid of mucus. Also take a mucus reliever to make sure it stays out of lungs. So far Lungs look & sound good. May that stay that way. But taking over 8,000 mg of Sodium a day. Know heart isn't happy. My O2 seems to stay around 97-98 so that's good. Weather here in FL finally getting warmer again so able to go out & walk at 7am in the morning. Morning walks seem to help. Just do baby steps one block at a time. Try to keep moving in house constantly. Walking will pick up your spirits especially if you have a pup to take. Hugs, Lisa
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Lisa
Lisa
Thanks for the concern, but I'm on a FT for what's left of my life- will not be able to "progress off feeding tube."
One of my big concerns is if the scar tissue will eventually grow so much my esophagus aperture is so small that, in event that I get sick and have to vomit, a major complication happens that is ER and life-threatening. Asked my Dr. about it, and he just blew it off, saying that won't happen. I still do swallowing exercises and am an ice cube addict(!!!) that gets moisture in my mouth & throat, and do swallow the water from the cubes. Thing is, I cough a lot of that up, so very little is going down the right pipe.
Oh well...what's done has been done, so I guess all we can do is grin and bear it.
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Dave K
I sure hope scar tissue spreads & does more damage. That happened to Suz here on forum. She too on feeding tube for life, can't even sip water, breathing so labored due to now becoming so narrow due to scar tissue. Cant believe We both had ancient machines & mine broke down 3 times. That was My wondering quit . Took a week off to have feeding tube placed get to a pain Dr, they didn't have one or could even refere, & give My throat a much needed break. They had a fussy fit I was going to ruin all their work. Excuse Me who's doing the work....Me. Who is in extreme pain Me, My gut actually said don't go back & I would have been better off. Those last few weeks was when he blasted my right side. If I would have stopped I probably would have at least My right salivary gland & maybe not fried out Thyroid. Trust Your gut is My advice. Look, you quit your thyroid meds probably feel better. Thyroid overdosed does its own wonderful set of horrible side effects. My depression was so intense and Phychitrist said No drugs would make Me sicker. Now matter how hard I tried to overcome it, trying CBD to help, but attempted to take My life to spare My family & myself anymore misery. All the things We enjoyed, eating out, traveling, socializing, going to festivals, wine, all gone. Should have not taken any treatment but just continued on living a fun & comfortable life till my number was up. One friend I know got DX with a severe high stage Cancer, she started Chemo immediately No radiation but a little over half way she said enough, she wanted to enjoy the time she had left living enjoying Grandkids, new boyfriend, traveling, eating & drinking again, was tired of feeling crappy. Think she is now starting into 3 year cancer free. Been traveling nonstop, eating at fabulous restaurants, drinks & loving life. Can't believe all they have done. Her husband had bowel Cancer, no treatments, just surgery, 3 yrs cancer free. Everybody is 1 in a million & not all people should get exact same treatments Should be tailored to that individual. Not everyone needs blasting & if not tolerating Chemo drugs, blood test confirming, than CHANGE it or cut back.
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Dave K
I know daisy and she does make typo mistakes sometimes. So I would ignore that. Also I'm also on a a FT permanently. Have been on it only year and a half now, but seems like forever. I can barely sip water. So we are in the same situation there. I have scar tissue build up on my airway. I too asked my doctor if more scar tissue would grow. He told me no. So I'm hoping in your case even though it's different location you won't accumulate more. They also want to put trach in me cause my breathing is difficult at times. I told them no. Having both just too much for me to handle. Not living my life being dependent on all kinds of tubes. Just horrible. Does being on FT cause anxiety with you?
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Dave KLogan51 said:Daisy
Read your post, please= "I sure hope scar tissue spreads and does more damage." What?!!!!!!!!!!!!!!! Thanks a lot. That is not the type of post anybody should ever make= fact.
I am so, so sorry. It was a tho error. I meant I hope it doesn't spread. Since My stroke from all the complications, My finger & brain don't always work together. I would never wish ANYONE in our position or with Cancer any negative. Again, I apology for saying it wrong. I meant no harm to you. Please hang in & take good care of yourself. Hugs, Daisy
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