Zippo Saliva & Over Radiation

Drivingdaisy
Drivingdaisy Member Posts: 263
in Head and Neck Cancer #1

Just wondering who else has suffered their loss of Saliva, have desert mouth 24/7, and constant sore throat & problems swallowing.  In 2016 when I completed treatments had saliva, great taste buds, took swallow therapy since was on Feeding tube and transiting to mouth eating & swallowing again.  Was amazed at the things I found I could eat.  But over 4 yrs, due to stomach/ Intestinal issues from Chemo & fried out thyroid, I m extremely limited 4 yrs later and not getting proper nutrition.  Got a Natural Dr to help Me supplement.  Even went to Mayo here in Fl for some answers, not much help but one Radiology Dr overseeing a double contrast CT for My abdomen listened to My story & felt so bad for Me.  Said I should never have had the treatments for what I was DX with & they would never have done what was done to Me here in My hometown.  I should not have lost both sides of Salivary glands or loss of Thyroid.  I was way over treated hence all My issues.  So In ending this My one thing I would recommend to a newbie to this horrific form of Cancer, don't rush it, get 2 possibly 3 opinions from top Centers before jumping into barbaric treatments you don't need.  Please to preserve your quality of life.  You deserve it.  Please don't end up like Me with multiple issues that won't let you get back to the living not a shell of yourself.  I have so many issues & No empathy from Drs here that their whole concern is they get paid & your another notch on their belt.....Your alive aren't you.  We killed it, yes for now but for how long.  Already 3 I know have died from this even our blessed Phrannie.  The horror stores of many 9 yrs later with destroyed kidneys on dialysis , only to finally give up, quit them and die days later after 10 yrs of battling this beast.  All from the treatment.  Leading horrible lives, seeing Dr after Dr, surgery after surgery, I've already from Chemo got a lifelong condition with My kidneys that even caused a stroke.  I am only 62.  I was a pretty healthy 58 yr old when I started this journey, now with 4 lifelong problems from treatments.   Please, Please get those opinions & best treatment you can so you CAN LIVE.

Comments

  • PipLily
    PipLily Member Posts: 130 Member
    #2
    I’m so sorry

    I’m so sorry that you’re suffering, even now. Horrible to get beyond the initial diagnosis, then have these ongoing life changes also. My heart breaks for you. My husband is just embarking on this daunting journey. We go Friday for our appointment to learn more about treatment options, and one thing I want to keep in mind is QUALITY of life after treatment. Very difficult to know how much treatment to agree to upfront, because we want the cancer GONE! But I want him to return to an acceptable quality after treatment. Hopefully being at a large cancer center, we can get some of these concerns addressed, but I know all patients and cases are so different. 

    Many hugs to you. So sorry you’re struggling. 

    Elizabeth

  • Drivingdaisy
    Drivingdaisy Member Posts: 263
    #3
    Piplily

    Good luck on your new journey into the world of H&N Cancer.  I wish your husband all the best.  I went to local Drs, big mistake yes, a larger Center really equipped with better Drs, better machines is a plus.  I firmly believe in Quality over Quanity.  My Brrother n Law told Me that before he passed from kidney disease from diabetes.  He had a rough road but tried to enjoy to the end.  But he could eat, drink, was not uncomfortable. If I knew than what I know now, boy would I have done things differently.  Quality IS living, but sick constantly & horrible mouth & painful throat from dryness is not enjoyable or comfortable.  So yes please tell them you want a Quality of living & hopefully adjust treatments appropriately.  Being over blasted & wrong Chemo drugs do so much damage they did not even tell Me about since afraid your won't do treatments.  There's No money for them in that.  Hopefully you have read many of the posts here and main post on things to expect on first page, top.  Make notes, be knowledge, knowledge is power over your destiny.  Again I wish you both an easy, less invasive, barbaric treatments & long life of fun.  please keep Us posted, this forum is where I learned so much during treatment trying to make sure I did better and worked very hard & got great tips from this forum.  We are a family........Welcome!

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