Everything Has Changed

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Hi Everyone,

 I have piped in & you guys helped Me  soooooo much.

Unfortunately, I felt luck at the beginning of Recovery. My Chemo Dr treated Me like a "Test Rat".  I was having an amazing recovery, unlike others.  During treatment had every side effect.  My mouth inside was so burned, so filled with sores, I could not even sip water.  Feeding tube went in at 3 1/2 weeks.  During first week to 2 weeks of Recovery wanted to give up.  Wow, all of a sudden, everything changed.  Was doing fantastic.  Why I became a"Test Rat".  Defied All odds.  Full intense taste & smell.  Some good Saliva, energy, no weight gain, but. Was very positive.  Even got some lectures from this site for drinking a beer here & there & eating steak too soon. But I pushed one & did not post.  I started My Journey thru this hell-hole in Feb 2016 defying the odds but at Nov, 2016 I developed problems with the 1 Salivery gland the worked very well.  Sub-lingual left side was Radiations major target.  Since than has gone down hill.  Got clogged, did everything My ENT asked.  Never un-clogged.  He kept testing but than I lost all Saliva.  Went to the main Specialist in field Jan of 2017 only to be told that saliva gland to too small to fix, tho it is still producing quite a bit but can't release it.  Delayed Radiation of that  small duct.  Had it verified. So know nothing I'm screwed.  Ok let's complicate the issue.  Chemo Dr  came to realize My sodium levels run lower tha Normal low.  Common for our Cancer to get lower sodium but I always knew it was different before Cancer and have dealt with problems My whole life but nobody ever figured it out but Me.  So now I get Water Poisoning constantly, been in hospital which was a horror story on its own, so I have been limited on fluid with a mouth with NO saliva & bone dry.  Unfortunately any product from Zylimelts to Throat drops & spray does nothing that would usually work, sticks in My mouth and won't  dissolve. Appears, latent Radiation really IS the gift that keeps on giving.  Combine this form of Cancer with HPV+ has a high rate of recurrence and now found migrating to other organs, lungs and to the brain & spine.  Already, 1 of My fellow Warriors that we went thru this together had it move to her lungs.  Doesn't look good.  Fingers are crossed.  She is amazing. Next week I go for My lastest Cat & blood/ sodium levels?  Will be interesting where I am at.  Very, very long story short.... I have hit major depression, NO positivity left, Never from diagnosis to now did I lose My positivity.  But, I am done,  delayed Radiation has showed Me & the HPV Virus that your time is more limited,  too bad...... After reading in this forum that delayed Radiation can rear its ugly head from now to any year down the rd.....I am so tired.  I take one Day at the time but t is becoming more bad days than good.  Any upbeat feeling would be highly appreciated. Thank you so much My fellow Warriors......Lisa

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
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    most sorry

    Drivingdaisy,

    Well, you are right, you need something upbeat. I am sorry for this series of events and still hope for some positive progress to come into your life, after all you are still that positive “Test Rat” we’ve come to love and I would love to sit in on a lecture while enjoying a steak and brew with you.  Remember, the next  hell-hole you see, jump over it.

    Better times,

    Matt

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
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    Thank you Matt

    Thank you so much Matt for responding.  I realize I should not complain.  So many have it worse, & newbies don't need depressing posts.  I have just fallen into that dark hole & it is so hard to crawl out.  Thank you for reaching out & offering support, very appreciated.  Hugs, Lisa

  • Joel4
    Joel4 Member Posts: 263 Member
    edited April 2017 #4
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    HPV

    Sorry to hear you are going through a tough time, having no saliva has to be so hard.

    You mentioned HPV twice and referenced higher rates of recurrence.  I've always heard of the HPV connection in a more positive light, such as more responsive to treatment and being a less aggressive cancer type overall.

    My cancer is HPV derived, could you shed more light on the negative aspects of this?

    Thanks

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
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    Post all you want

    This is the roller coaster from hell and newbies should know that.

    Please talk to your doctor and let him know you are overwhelmed.  

    Hugs, daisy.

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
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    Hi Joel,

    Hi, don't know where you are at at this point or what your Drs have said.  If you look at many of the post I would say 50-75% have the HPV virus also.  Much higher than before and it is effecting so many other areas.  Yes, it is easier to treat, often slower growing but once it gets a hold it keeps looking for moist areas to invade & get comfortable.  Unfortunately that is why it can reoccur quicker.  Even if you following all the rules, it doesn't.  I feel, My Opinion, since they are just putting this all together that Our generation & the ones following have a more mutant HPV than in the past.  Gets in the system looks for a new area to settle.  I could take up 2 pages with things. I am learning.  Unfortunatly, I am so very sorry but something you will understand on this Journey, We have a Cancer that is the worst to treat due to all the side effects.  And unfortunately they continuts on through your life.  You will notice many others with Cancer, eat, drink, often look & feel more normal.  They do not deal with ALL these side effects.  And each person reacts differently.  But the Throat neck controls our body & everyday living so much that you & most don't realize.  That is why you need to understand & be tougher & realize, it really is Day by Day.  It can change overnight.  I may not be the one you want to talk with since this is not a joke but even before Cancer and throughout My entire life My body & reactions are very abi-normal.  More Drs are stumped on how to treat Me since I don't respond like most. Many have given up.  My advise would be start a new blog in your name so many of the others will respond to you.  Oh, I wish you well, Be Positive, Be the Warrior & do your best.  One day at a Time.  Big hugs, Lisa

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
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    Post all you want

    This is the roller coaster from hell and newbies should know that.

    Please talk to your doctor and let him know you are overwhelmed.  

    Hugs, daisy.

    Norllesmom

    Hi, not sure how to take your response.  Unfortunately.  You do not know Me or what I have dealt with, Cancer is just a small part & it is hell.  It IS the worst due to treatment, side effect, how your body responds, and delayed Radiation/ Chemo that just keeps giving is a ****.  I lost My 92 yr old Mother who went downhill out of the blue when I started treatment last year.  They would not release Me to fly to see her.  I could not hold her hand as I promised her (we were the closest out of my other siblings).  I didn't see her or get to say good by.  That was the 2nd big hit with 8 other things including deaths.  I was doing well & left this site due to some judgements that I had hoped were a Positive but as I & My Chemo Dr realized, I was recovering like nothing they had seen.  Others, which I don't blame suffering felt like ****.  I really had "Survivor Guilt" So I did not post.  When I did I tried to give Positive treatment at home options to help with healing.  I backed away, did NOT want to hurt anyone.  I than due to the nature of my body being very Abi-Normal before This Cancer developed a ton of latent Radiation Effects.  Just came back on site to talk with long timers, so to speak.  I do not want to upset the Newbies, it's so scary as it is.  Just needed some support.  Sorry if I was just needing a bit of support & understanding.  So if it makes you feel better, I won't post anymore.   Hey won't live that much longer due to the effects and they can't regulate how to deal with how weird My body responses that I am even more limited & horribly uncomfortable.  So I will not say another word.  Good luck to you & those you love.

  • phrannie51
    phrannie51 Member Posts: 4,716
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    Ah Daisy....

    I'm so glad you dropped in!!  If you have to limit your water intake, is it still possible to rinse and spit water (other than inconvenient), if you're not swallowing it, it can't hurt you...I seem to always need some water at my side...not because I'm thirsty and need to drink it, but my mouth is dry, and I just need a sip to spread around my mouth.  Will they let you do that?

    As for the depression...some of us really hit a wall that doesn't want to budge.  We cannot seem to get over it and move on.  I spent nearly 4 years trying to talk myself over it, trying to work myself over it, even tried to shop myself over it....nothing worked.  I had been offered antidepressents/anti-anxiety meds....first during treatment....I said no....and then several times after treatment, again, I said no thanks...I'm sure I can work this out....I've never had a problem with depression in my life.  Finally, after almost 4 years, I caved....and started taking an antidepressent/anti-anxiety med...BINGO!  Within 10 days, I woke up one morning and felt "normal" for the first time in what felt like forever....I'm still taking them....they are not addictive....they don't offer a high....they just allow you to climb out of that rut and get on firm ground.  I wish I had those 4 years back that I spent worrying about a recurrence, when I should have been celebrating my new found joy of life.

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
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    Norllesmom

    Hi, not sure how to take your response.  Unfortunately.  You do not know Me or what I have dealt with, Cancer is just a small part & it is hell.  It IS the worst due to treatment, side effect, how your body responds, and delayed Radiation/ Chemo that just keeps giving is a ****.  I lost My 92 yr old Mother who went downhill out of the blue when I started treatment last year.  They would not release Me to fly to see her.  I could not hold her hand as I promised her (we were the closest out of my other siblings).  I didn't see her or get to say good by.  That was the 2nd big hit with 8 other things including deaths.  I was doing well & left this site due to some judgements that I had hoped were a Positive but as I & My Chemo Dr realized, I was recovering like nothing they had seen.  Others, which I don't blame suffering felt like ****.  I really had "Survivor Guilt" So I did not post.  When I did I tried to give Positive treatment at home options to help with healing.  I backed away, did NOT want to hurt anyone.  I than due to the nature of my body being very Abi-Normal before This Cancer developed a ton of latent Radiation Effects.  Just came back on site to talk with long timers, so to speak.  I do not want to upset the Newbies, it's so scary as it is.  Just needed some support.  Sorry if I was just needing a bit of support & understanding.  So if it makes you feel better, I won't post anymore.   Hey won't live that much longer due to the effects and they can't regulate how to deal with how weird My body responses that I am even more limited & horribly uncomfortable.  So I will not say another word.  Good luck to you & those you love.

    Meant only to be supportive

    I believe those who have been through as much as you have help newbies by being as open as you have.

    I've seen posts from those without experience who had oncologists who were not completely honest about how difficult the journey is in so many ways

    Absolutely did not mean to offend you but to encourage you to continue sharing and not be spologetic.

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
    edited April 2017 #10
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    Noellesmom

    Hi Noellesmom,  I am so very sorry I took your comment wrong and jumped on you.  I apolize.  I had gotten more bad news yesterday regarding a very, very healthy family with prostrate cancer.  Just found out & looked at at the Prostrate Forum & read more on it & its side effects with the treatment he is considering & tho I gave him huge positive thoughts It too has its problem.  This is becoming so frustrating how many I know developing Cancer and the few that died young.  I took My frustration out on You which is no excuse so again, I apologize.  Hugs, Lisa

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
    edited April 2017 #11
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    Phrannie51

    Hi P,  Thank you for commenting,  you have always been so sweet, funny, helpful, & supportive.  Yes, I rinse out my mouth constantly and swish & spit Biotine.  I even use the Baking soda at least 3 xdaily.  I have tried every, and I mean every, product for dry mouth.  I would rotate.  Since I was producing some saliva throughout most of treatment & Recovery, more than most, all the different products helped.  Probably why I was doing so well so fast.    So after dealing with a feeding tube, losing  so much weight I was down to 98 lbs, & Hungary as a horse, kept trying & sampling every soft food I could.  Started to move on to other food.  Doing well than bam, My best saliva gland got clogged.  Did everything I was told.  Still produced lots of saliva but could not get out so the gland swelled up like a same egg.  Now not hardly any saliva.  I still had & have overly intense smell & taste.  could not do juice, Gaterade, anything with sugar.  Way to sweet.  Plus had " burning tongue & nerve damage.  Will tell you, lazer of the tongue slowly was the best.  No more pain and could eat more solids to try & gain weight.  Here's the kicker there, found I had high food allergies. Top 5...Dairy, eggs, soy, Almond & OJ.  Had it, didn't know & caused more mucus.  They could not control My horrific allergies that here in FL are 24/7 all year round. So now dry mouth, tons of mucus.  Thirsty every moment, drank & peed allot even before Cancer, now it is worse with NO Saliva.  Developed water poisoning/sodium depleted syndrome.  Was finally diagnosed with lower than normal sodium. Average at the total bottom being at 130 .  I average for Me is 125 & drops lower.  Knew something was not right most of My Life.  Craved salt, and ate over the amount and they thought I ate to much & raised My blook pressure.  Not the reason, had to ingest to keep Me somewhat balanced.  Did you know Throat Cancer causes sodium deficiency.  So know that is also happening, I am even more screwed..  My Drs are going crazy, since

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
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    Phrannie51

    Hi P,  Thank you for commenting,  you have always been so sweet, funny, helpful, & supportive.  Yes, I rinse out my mouth constantly and swish & spit Biotine.  I even use the Baking soda at least 3 xdaily.  I have tried every, and I mean every, product for dry mouth.  I would rotate.  Since I was producing some saliva throughout most of treatment & Recovery, more than most, all the different products helped.  Probably why I was doing so well so fast.    So after dealing with a feeding tube, losing  so much weight I was down to 98 lbs, & Hungary as a horse, kept trying & sampling every soft food I could.  Started to move on to other food.  Doing well than bam, My best saliva gland got clogged.  Did everything I was told.  Still produced lots of saliva but could not get out so the gland swelled up like a same egg.  Now not hardly any saliva.  I still had & have overly intense smell & taste.  could not do juice, Gaterade, anything with sugar.  Way to sweet.  Plus had " burning tongue & nerve damage.  Will tell you, lazer of the tongue slowly was the best.  No more pain and could eat more solids to try & gain weight.  Here's the kicker there, found I had high food allergies. Top 5...Dairy, eggs, soy, Almond & OJ.  Had it, didn't know & caused more mucus.  They could not control My horrific allergies that here in FL are 24/7 all year round. So now dry mouth, tons of mucus.  Thirsty every moment, drank & peed allot even before Cancer, now it is worse with NO Saliva.  Developed water poisoning/sodium depleted syndrome.  Was finally diagnosed with lower than normal sodium. Average at the total bottom being at 130 .  I average for Me is 125 & drops lower.  Knew something was not right most of My Life.  Craved salt, and ate over the amount and they thought I ate to much & raised My blook pressure.  Not the reason, had to ingest to keep Me somewhat balanced.  Did you know Throat Cancer causes sodium deficiency.  So know that is also happening, I am even more screwed..  My Drs are going crazy, since

    you are telling all your secrets. Not me.

    Lisa,

    I forgot to offer you a hug. 

    Here is a big one.

    Matt

     

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
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    Phrannie51

    know this is long winded but only way one can understand how abi-Normal I m just on My own Dealing with this.  As for anti-depressants, been on for years.  They have tried them all on Me, reacted opposite, found 20mg Prozac is all I can take.  Does just a little .  Was diagnosed with PDSD 2 times in the last 10 yrs, have all the symoms but can't medicate.  As I (myself) weaned off Morphine for the Cancer pain, first morphine ever, did find the 5 mg ER, helped My mood but as We all know I will always need more.  Why I don't stay on drugs to long.  5 days and off on fusion back surgery.  Drs are amazed at My pain level.  I do not hold any anathesia, due to a blood clotting disorder, so 3-4 TIAs.  Turing 60 this year, between Senior Moments, severe Chemo Brain, & now problems from the major sodium deficiency, brain is mostly gone.  In a fog, some days better than other, lost My organization skills, do not function well, computer is getting harder, frustration.  Sinus Allergeries cause daily headaches, live allot on Ice chips, found Amstel Light beer helps My thirst to a point & believe it or not, some clarity but also has water.  Everything has-water in it so Pharmacy grade hydration powder 5 times a day to try to replenish salt & enzymes.   My Drs know everything, I never hold back.  Also, here's another problem you All can chastise.  I starting smoking again last yr after.  After our cat at 20 yrs died,  woke up to it,   2 months later Our 11 yr old dog died unexpectedly in 2 weeks, than My Mom 2 wks later so fast. Just the tip of the stress ice burg what else was going on.   So while taking care of My daughter cats, next door, Came across My old pack of cigs.  I felt Myself heading to the dark hole.  Sat on her porch, with My one beer two cigs and distressed.  Just did not realize that 2 would  draw Me back in.  Was so mad but worked hard to quit again, Drs knew .  Been working hard to quit again, but the stress has been overwhelming.  Been wanting to do the Chantex, but not approved due to all the problems.  Eat like a horse but only up to 104.  Can't seem to keep weight on & Chantex makes Me very nauseous  Damn if I do, damn if I dont.  Mon I get My Three month scan, always have not worried but at this point, ?.  It will be, as always, what it will be, no use worrying since can't change results.  Hope My Cancer buddy scans after treatment for Lung is successful.  I try & fight, be Positive, but oh so tired.  Again, I am sorry this is so long but I hope people will please understand My frustration.  But I want evey Warrior to be the Best they can be & fight, if the can.  Hugs to All.  Lisa

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
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    CivilMatt said:

    you are telling all your secrets. Not me.

    Lisa,

    I forgot to offer you a hug. 

    Here is a big one.

    Matt

     

    Matt

    thank you for the hug.  Just trying to explain My frustration & sadness.  I don't usually share but needed to explain.  Have had Neg response when just sharing & NED, & enjoying progress on this site.  Was hoping to give hope but delayed Radiation is a *****!!!  This is My support,  all My friends are not in Florida and many others don't understand the side effects of this Cancer & how My body reacts so weird.  Keep offering all of this advice and ram it down my Throat things I can not do, or can't realize are horrible side effects. Drives Me crazy.

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
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    Noellesmom

    Hi Noellesmom,  I am so very sorry I took your comment wrong and jumped on you.  I apolize.  I had gotten more bad news yesterday regarding a very, very healthy family with prostrate cancer.  Just found out & looked at at the Prostrate Forum & read more on it & its side effects with the treatment he is considering & tho I gave him huge positive thoughts It too has its problem.  This is becoming so frustrating how many I know developing Cancer and the few that died young.  I took My frustration out on You which is no excuse so again, I apologize.  Hugs, Lisa

    Understand

    Lisa, my husband has had some serious late side effects from radiation.  He also now suffers from chronic low sodium.

    The two of seem to have similar post-treatment difficulties.

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
    edited April 2017 #16
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    Another NED & good Labs.

    Saw my Chemo Dr late Friday for My results  for CT/with dye of My Neck & Chest.  No changes in either , looking good.  NED in both areas.  My friend who I went through treatment together also has the same Chemo Dr that I have & since we both had flickers  in our lungs since the beginning I told him My worries.  He was kind enough to let me know that her Lung Cancer is different from our Throat issues and as they watched hers grow mine did nothing.  She has been treated and scans next week.  He feels very positive and I mentioned to him she is very nervous.  We both think she is so sweet & amazing we are all positive for a good outcome.  She is still NED in her Throat. One pressure off my mind.  We are working on a new game plan and will be applying for a endoscopic treatment from a big Specialist here in FL to give her the go ahead to try to prick openings in the duct to see if we can get some saliva to escape.  I make a lot off saliva of this one small gland & they are uncomfortable that it swells but can't get out & has to be reabsored whic can cause infection & surgical removable which none of my Drs want. On top of this My Dentist called & informed me Neutrsal should now be available and has put in an order.  The one powder that got my Salivary Glands starting to work but since it was always on back log all last yrs, hoping being able to get it again may perk up my other Salivary Glands again.  So much positive news & game plan now.  Also found more enzyme drinks  with extra salt, one being Propel with NO flavor which is fantastic for And I found Organic Gaterade with higher concentrations especially salt that I can tolerate so hoping to finally be able to get off the Amstel light beer since it was one of the only things helping my super dry mouth.  Also now approved to start the Chantex, so hopefully bye bye cigs again. Depression has already dropped, Positivity improving making plans for some new adventures. So my new advice, never give up trying something new and be your own advocate. Use natural, prescribed when needed and try what ever people suggest.  Never know the one that may work.  So My friends, keep trucking, Be Warriors, & Newbes....... follow advice you can get on this forum.  Helped Me so much and I love you all.  Fight on but really live your life in your comfort zone. One Day at a Time.  And try your best not to go into the black hole if you can. Big hugs to all........ Lisa