Going the wrong way

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PatDarago
PatDarago Member Posts: 14
edited October 2013 in Head and Neck Cancer #1

These last few months ,it seems things are going the wrong direction for me with the long term dealing with my cancer . Ended treatment for BOT SCC in April ,2010. I am happy to announce that all my scans are cancer free and my doctors say I am doing great . But because of a dentist  , I have developed ORN and am going thru the process of trying to get my jaw to heal ,but will probably have to have a total jaw replacement . It is very painfully and I am meds , which is making my job very difficult to keep up.I am also are starting to have problems swallowing , I have had a swallow test done twice , the first one I failed and it was recommended I get a peg tube. The second showed a problem , but my doctor thinks that for now  I am ok.but for how long?? I am trying to live a productive life after cancer , but seems like I am taking steps backwards and don't know how I can keep all the things in my life( work, family, quality of life) going . 

 

Thanks for reading, just needed to vent.

 

Pat

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  • donfoo
    donfoo Member Posts: 1,771 Member
    #2
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    sorry to hear

    Hi Pat,

    So sorry to hear the post treatment side effects. Sometimes even having NED stamped all around daily life can still create unpleasant circumstances. First, how does a dentist make ORN develop? From everyhing I know, it is primarily caused by radiation over time damaging the bones of the jaw. 

    As you joined CSN long after your tratment with cancer, you still likely know the mantra that we all find a new abi-normal - a new normal that is almost certainly different than the old normal. Often, we find our lives and outlook are crisper and more enjoyable than before while we may suffer minor aches and pains that were not present before. Also, post treatment improvements occur in much slower increments of time; weeks and months are far more normal steps as we move forward in life post cancer.

    There are organizations such as  http://www.cancersupportcommunity.org/ that are there to help you share with others your story and struggles and support each other through new and ongoig challenges.

    Most humans do not like change yet cancer does change us, so it is important to know it is not just ok but sometimes necessary to let go of somethings old and valuable and grasp for some things new as you look forward to settling onto the next place that is the new you. best to you

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #3
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    pat, i'm so sorry to hear u r

    pat, i'm so sorry to hear u r go'n thru all this after making it thru tx!  u would think things would be get'n better this far out but unfortunately, radiation keeps on giving long after tx.  i pray your health will start to improve and stay on that path.  you r welcome to vent anytime u feel the need.  after what u've been thru and what u r going thru, u have every right to vent.  hang n there and keep us posted on your progress.

    God bless,

    dj

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #4
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    turn around time

    Pat,

    It is very good to hear your scans have been “cancer free”, but sorry that the side effects of treatment are still taking their toll (ORN).  I hope your doctors are focused on your improvement and that positive results come from current and future actions by them and you.

    You are not traveling uncharted waters, but sometimes it feels that way.  I have read stories like yours on the H&N forum and can only hope some members will chime in and respond with “been there, done that” kind of authority.

    Best always,

    Matt

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #5
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    Hi Pat

    I thought about your situation for quite awhile before deciding to pen a few notes to you.  What you are going through is rough; there is no denying it.  And you have a ways to go to be a final product, if there ever is such a thing.  I suppose the same could be said for all of us, but most won't have to climb the mountain you are toiling up.

     

    Having said that, you and I are both alive, and most of what is left to us is good.  These other things are monsterous distractions, that is true.  But the majority of what we want out of life is still ahead of us.  We make a choice daily.  To enjoy what we have, or to regret what we've lost--- or still may lose.  It is a choice people like you and I need to remind ourselves about a lot.

    My first throat cancer was over 15 years ago.  I was lucky, did well through and after treatment and went a number of years without any real problems.  Then I had cancer number two, and eventually cancer number 3.  Those treatments have changed things a lot for me.  I am NED, coming rapidly upon two years after my last treatment, so  there is now a very reasonable chance I will survive long term and simply have to deal with all the problems the treatments have bestowed upon me.   And those problems are likley about what you are experiencing.  A year post treatment I could eat.  Very slowly and with lots of slick fluid, not just water, to get things down.  Now I cannot, in year number two I have lost that ability.  If I am outside in air temperatures below about 50, I cannot talk.  I have a mouth opening that is only 16 millimeters, barely enough to brush my teeth.  And when the dental problems arise, as they almost certainly will, I am not certain how they can be handled.

    Having said this, that's what I am nowadays.  I feel basically good, am still able to do things that surprise most people, and enjoy almost 100 percent of every day.  I chose not to fret about the fact I cannot eat, and that my liquid diet is boring as hell.  I've already talked about PEg tube placement with the ENT oncologist, and will proceed with that if and when the time dictates I must.  I still go to restaurants with my wife, and enjoy the experience, if not the food.

     

    I've already had a very major surgery, equivalent to jaw replacement.  So if I get to that point, although not looking forward to it, I know what is in store for me.  Not much fun, maybe, but I know i will come out the other end of it.

     

    Life is still worth living to me.  I have no regrets having chosen to go through these last treatments--- treatments I knew would almost certainly cause disability for me.  All people like you and me can do is just do the very best we are able.  And to dwell on the positives, not the negatives. 

     

    Wishing you the very best.

     

    Pat

     

     

  • Mikemetz
    Mikemetz Member Posts: 465 Member
    #6
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    ORN and resecting

    Pat,

    Sorry to hear than you have developed ORN.  I don't understand how a dentist could have caused that, but that doesn't really matter--it is what it is.  I started ORN symptoms within a few months of completing rads 4+ years ago and have now been diagnosed with chronic ORN, losing several teeth and having several bone fragements work their way to the surface. The writing is on the wall for a jaw resecting.  I have elected to wait until April of 2014 so I can do some planned travel, but already detect that this is moving along faster than I would like.  If I can be of any help as you move along with this, please PM me and we can chat that way.

    Mike

     

  • ratface
    ratface Member Posts: 1,337 Member
    #7
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    Mikemetz said:

    ORN and resecting

    Pat,

    Sorry to hear than you have developed ORN.  I don't understand how a dentist could have caused that, but that doesn't really matter--it is what it is.  I started ORN symptoms within a few months of completing rads 4+ years ago and have now been diagnosed with chronic ORN, losing several teeth and having several bone fragements work their way to the surface. The writing is on the wall for a jaw resecting.  I have elected to wait until April of 2014 so I can do some planned travel, but already detect that this is moving along faster than I would like.  If I can be of any help as you move along with this, please PM me and we can chat that way.

    Mike

     

    have not been on this road

    Hello Pat, I have not been this way  but know many who have. I attend a regular Head and Neck cancer group and probably 50 percent of our members have serious complications, One lady is on her third jaw replacement. She is not only handling it but thriving against all odds. Tough turn of events but Life is sweet and you will visit this concept more than most of us. Check out any Local Head and Neck group, Support for People with Head and Neck Cancer, SPOHNC,  sponsers local chapters evrywhere and many hospitals have their own. This coming meeting we have a guest speaker who is a HN cancer surgeon, and there is much wisdom to be gained from members. Just another option to explore. All my best and welcome to our group.

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