Managing side effects 4+ years out

jaleha
jaleha Member Posts: 3
in Head and Neck Cancer #1

I am new and never knew this board existed.  I tried calling other networks years ago trying to locate someone with a like experience to talk to.  I guess I just didn't try hard enough.  As my subject says I have been cancer free for over 4 years now.  I had a very small squamous cell carcinoma on my right cheek near my nose which went undetected and then finally Mohs surgery.  The cancer had invaded my trigeminal nerve and the doctor who performed the Mohs chose not to send me to an oncologist or order an MRI.  I was ignorant and continued to see the same doctor.  Shame on me.  Anyway, several months down the road the perinueral invasion was recurrent and resulted in a surgery that required the lower eye socket to be removed as well as part of my cheek and jaw bones.  Several teeth were pulled as well.  The surgery and reconstuction took over 9 hours. Titanium mesh was used to rebuild the eye socket and cheek bone and a tendon was rotated from my head to my cheek.  The margin was clear only at the brain stem.  Obviously I am extremely fortunate to be writing this.  I am also very fortunate that the cancer has not returned locally or in any other organ.  The surgery was follow by 30 radiation treatments to the facial area, the brain, the brain stem and several other glands as well as the optic nerve.  A few minor surgeries were necesarry over the next couple of years for my eye to function well and a sinuplasty to help me breath.  I also had a tube in my ear for a couple of years or so.  I am now using a nasal nebulizer with vancomycin and levequin to keep the sinus infections at bay.  I have never recovered my energy or a sustained health for any length of time.  I am posting to see if there is anyone out there who has experienced something similar and still lacks normal ability to function although they are cancer free and not undergoing any further radiation or chemo.  I am female and 61.  i was 56 and fairly active when the first surgery occurred.  I had to retire (teaching) as i could not stay well long enough to maintain the job.  I try to eat well and get some light exercise.  I have gained back to a healthy weight and have no trouble keeping it on.  As a matter of fact, I wouldn't mind getting the last 5 pounds off!  My face is lopsided and I try to just be grateful that I have a face but sometimes I fail.  The trauma causes mild to bothersome discomfort which is a constant reminder that I am not the same as I was.  i would really appreciate any suggestions that might be beneficial.  Also, I will keep reading this board and allow it to be a reminder of what is important and again of just how fortunate I am.  I will also keep the other posters in my prayers.  Thanks for listening (reading). 

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2
    i hear you

    jaleha,

    Welcome to the H&N forum, so sorry for the atrocious path you have taken to get here.  There are others here which can share your condition.  About the only thing I truly share with you is being tired.  The doctor is fine tuning my Thyroid meds and I believe I am feeling better.

    Feel free to bare your soul here, many of us do at one time or another.  You are with a group that understands.

    Matt

  • hwt
    hwt Member Posts: 2,328 Member
    #3
    CivilMatt said:

    i hear you

    jaleha,

    Welcome to the H&N forum, so sorry for the atrocious path you have taken to get here.  There are others here which can share your condition.  About the only thing I truly share with you is being tired.  The doctor is fine tuning my Thyroid meds and I believe I am feeling better.

    Feel free to bare your soul here, many of us do at one time or another.  You are with a group that understands.

    Matt

    Jaleha

    Welcome...happy that you found us. I am just about 2 1/2 years out from the onset of my journey with cancer of the mandible (lower jaw). I had 2 recurrences, one at 15 mos out and the 2nd at 18mos out. I finished tx at Mayo clinic last Friday and will have another scan 8-12 weeks out. I originally lost 65 pounds and have kept it off, fortunately, I had it to lose. I think it was Phrannie that said "I used to live to eat and now I eat to live". I have been lucky to have a good energy level throughout. Like you, I pretty much have 24/7 discomfort but not real pain. 

    You've found a good forum. Feel free to ask any questions you might have.

     

     

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #4
    jaleha, welcome to the

    jaleha, welcome to the family.  i'm so glad you found us.  i'm 2 yrs out from larynx cancer, had rads then recurrence and had total laryngectomy.  2/28/14 was my 2 yr free mark.  i'm sorry you've had such a terrible road to travel and i pray it gets and stays better.  you've found a good site here, with great people who truly care and understand.  like you, i didn't find this until after my tx.  well you are here now and i hope you will hang around.  we will be here for you.  my face is also messed up from surgery.  i look  just like a bobblehead in my pics, but at least i'm still here to bobble....lol.  its all part of the healing process i guess.  well, again, welcome, glad to have you.

    dj

  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #5
    Sister from a different mister!

    Wow.  I'm sorry it took so long to find us.  You sound a lot like me.  Did you lose your eye, vision with the optic nerve?  I also go to a site, Lost Eye, for my monocular issues.  I just turned 60, and needed to retire from my teaching job after I lost my eye to the perineural invasion.   Feel free to pm me for any information.  I use an over the counter product, Alkalol, to add with my saline solution.  It has helped tremendously with sinus issues/infections. 

  • jaleha
    jaleha Member Posts: 3
    #6
    KTeacher said:

    Sister from a different mister!

    Wow.  I'm sorry it took so long to find us.  You sound a lot like me.  Did you lose your eye, vision with the optic nerve?  I also go to a site, Lost Eye, for my monocular issues.  I just turned 60, and needed to retire from my teaching job after I lost my eye to the perineural invasion.   Feel free to pm me for any information.  I use an over the counter product, Alkalol, to add with my saline solution.  It has helped tremendously with sinus issues/infections. 

    Amazing!

    Thanks to you all!  You are all amazing!  I was not so self centered that I thought i was a lone wolf but I didn't know any others and felt rather lost.  Thanks for a sense of unity in an area that is so physically, mentally, and emotionally confusing.  I love the sense of humor here.  I MUST LAUGH!  I wish I had found you all earlier, but timing is everything.  Maybe now is the perfect time.  The picture is so big!

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

    Amazing!

    Thanks to you all!  You are all amazing!  I was not so self centered that I thought i was a lone wolf but I didn't know any others and felt rather lost.  Thanks for a sense of unity in an area that is so physically, mentally, and emotionally confusing.  I love the sense of humor here.  I MUST LAUGH!  I wish I had found you all earlier, but timing is everything.  Maybe now is the perfect time.  The picture is so big!

    I've heard your story before

    Not personally but from a SPOHNC group member.  I'm a five year survivor from just the run of the mill stage four, chemo, radiation, neck disection walk in the park stuff. You are a Gladiator!! Just a thought about physical group meetings, You will find some hardcore survivors there like yourself. Not for everyone but just another resource. The OCF Board is also a great site. Welcome to the forum. 

  • Hondo
    Hondo Member Posts: 6,636 Member
    #8
    KTeacher said:

    Sister from a different mister!

    Wow.  I'm sorry it took so long to find us.  You sound a lot like me.  Did you lose your eye, vision with the optic nerve?  I also go to a site, Lost Eye, for my monocular issues.  I just turned 60, and needed to retire from my teaching job after I lost my eye to the perineural invasion.   Feel free to pm me for any information.  I use an over the counter product, Alkalol, to add with my saline solution.  It has helped tremendously with sinus issues/infections. 

    Hi Jaleha

    Welcome to H&N on CSN, looks like you have been through a lot and still fighting so keep up the good work. I am using the same stuff that KTeacher told you about for sinus rinse and infection. It works great and helps to breath so much better at night.

     

    God Bless

    Hondo

  • Guzzle
    Guzzle Member Posts: 710
    #9
    Hondo said:

    Hi Jaleha

    Welcome to H&N on CSN, looks like you have been through a lot and still fighting so keep up the good work. I am using the same stuff that KTeacher told you about for sinus rinse and infection. It works great and helps to breath so much better at night.

     

    God Bless

    Hondo

    Tough Lady

    Jaleha, Im just awaiting therapy in UK following neck dissection, lump/tonsil out. Flesh wound compared to what you've been through. Ive found great advice and great people on this site. Next time in US Ill be buying a few of them a beer I hope. Good Luck to You. G.

  • jaleha
    jaleha Member Posts: 3
    #10
    Guzzle said:

    Tough Lady

    Jaleha, Im just awaiting therapy in UK following neck dissection, lump/tonsil out. Flesh wound compared to what you've been through. Ive found great advice and great people on this site. Next time in US Ill be buying a few of them a beer I hope. Good Luck to You. G.

    Encouraging

    Thanks again!  You folks are making me feel stronger already!  Hope I can return the favor or pay it forward.

  • josh r.
    josh r. Member Posts: 264 Member
    #11
    jaleha said:

    Encouraging

    Thanks again!  You folks are making me feel stronger already!  Hope I can return the favor or pay it forward.

    strength

    jaleha,

    You show great strength, and a lite not heavy heart, especially for one who has been through so much. Welcome and I wish you all the best as you share yourself with us. josh r.

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