I am a stage 4 tongue cancer survivor

It was a long tough road but it seems as if I have won the battles so far.

Let me start this by saying I smoked from 1972 - 1977 and the Dr's do not think this was an issue.  I am a extremely light drinker.  I drink socially and only a beer or a glass of wine and never more than one.  HPV could be a culprit as I dated more than a few women when I was dealing with my divorce in 1987-88.  It's amazing that it took 20 years to present if that is indeed the cause.  I read that an oncologist wrote we have cancer in our bodies all the time.  It's just a matter of some trigger setting it off.  Stress, sickness of another type, etc.  I had tons of stress in July of 2007.  My wife lost her Dad and 10 days later I lost my Mom.  Her parents live in China and my Mom is in the US (as am I).

September of 2007 - lost taste of food.  I tasted something but it was only half the flavour I expected.  My family Dr said taste issues are in the brain so she ordered a CT of my brain.  No abnormalities.

November 2007 - Still experiencing loss of taste but now have developed a nagging pain under my right ear. - Went to see a Ear, Nose, Throat Dr.  He said it was TMJ and take Ibuprofin.

January 2008 - Went to another ENT Dr who said it could be a nerve in my ear.  He ordered an MRI.  The guy who read it said he thought he saw something on my tongue.

January 2008 - Another MRI of my head and neck this time.  They found something but don't know what it is.

February 2008 - Biopsy confirmed the worst.  Cancer of the tongue.  Stage 3.

Feb 08 - saw a cancer surgeon - he said it was inoperable (too large) as he would have to remove my tongue and my quality of life wouldn't be there.

February 2008 - went to see an oncologist (1st opinion) who was too blunt.  Said he was leaving to teach at University and had said if the cancr is in my lymphnodes I will be dead soon.  Said I should see my dentist for review.

Feb 08 - Dentist, oral surgeon, gum Dr., all said my teeth should come out.  All my teeth!  So I went in to have them all removed surgically. (Insurance doesn't cover this I found out later).

Feb 08 - Surgery to put in the feeding tube and my 'Port-a-Cath' - makes delivery of Chemo easier.  Ordered several cases of liquid food (Insurance doesn't cover the food either).

March - got to see 2nd oncologist they mapped out my course of treatment.  7,000 units of radiation over a 7 week period.  They made my face mask (to hold my head still) and we started on Monday.

Three heavy doses of chemo (cisplatin).  The chemo would be delivered on days 1&2 of weeks 1, 4, and 7.  The dose is so strong they had to give me half at a time, so two days for one dose.

April 08 - we finished treatment.  Now I just have to start feeling better.

August 08 - PET scan shows tongue and neck are clear but now there is a spot on my spine and my lung to be concerned about (turned out it was nothing)

December 12 - PET is clean from the top of my head to my knees.  Yippie!!!!

Side effects - Good - I havn't had to shave my neck for four years now and it's as smooth as a babys bottom.  Lost a bunch of weight.  Kept it off until I had dental implants put in to hold my dentures in place better.   Now I'm heavy again.

Side effects - Tolerable -  When my weight was down I was cold most of the time.  Because of the targeted radiation my neck cramps up when it is cold in the room.  I can't whistle well at all and my singing voice isn't what it used to be.

Side effects - Bad - none.  I'm still here.

There is so much more to this.  feel free to ask questions.

Parents
  • Hello 

    i am in your same situation but my cancer is srage 4 my last pet scan result neck clear but in my tongue thr's a little sign . So i am having another biopsy this week . My question is how long it take to eat solid food again? I finish my treatment in june but at today i cannot eat or chewy anything.

    thank you 

  • Hi Giuseppe and welcome to Cancer Chat.

    I'm sorry to hear your scan had mixed results and that you've had trouble eating properly since finishing your treatment in June.

    Unfortunately Kjar53 hasn't been on the forum since 2014 and this discussion hasn't been active since 2019 so it's unlikely you will hear back from anyone here, but if you start your own discussion or find a more recent discussion to post on, you will increase your chances of receiving advice from the community.

    You're also welcome to give our cancer nurses a call on 0808 800 4040, Their phone lines are open Monday - Friday between 9a.m - 5p.m and they will do all they can to help.  

    I hope this helps and your biopsy goes well next week.

    Kind regards,

    Steph, Cancer Chat Moderator

Reply
  • Hi Giuseppe and welcome to Cancer Chat.

    I'm sorry to hear your scan had mixed results and that you've had trouble eating properly since finishing your treatment in June.

    Unfortunately Kjar53 hasn't been on the forum since 2014 and this discussion hasn't been active since 2019 so it's unlikely you will hear back from anyone here, but if you start your own discussion or find a more recent discussion to post on, you will increase your chances of receiving advice from the community.

    You're also welcome to give our cancer nurses a call on 0808 800 4040, Their phone lines are open Monday - Friday between 9a.m - 5p.m and they will do all they can to help.  

    I hope this helps and your biopsy goes well next week.

    Kind regards,

    Steph, Cancer Chat Moderator

Children
No Data