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I am a stage 4 tongue cancer survivor

21 Jul 2012 16:36

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.

Re: I am a stage 4 tongue cancer survivor

21 Jul 2012 19:19 in response to Kjar53

HI Kjar53

Thank you for sharing your story. It helps those going through treatment to read about survivors like you, who have been through such a lot and have come out the other side. Thanks too for offering to answer questions from those affected by this form of cancer.

Welcome to Cancer Chat.

Best wishes

Jane

Re: I am a stage 4 tongue cancer survivor

21 Jul 2012 20:36 in response to Kjar53

WOWWWWWWWWWWWWWWWWW.. always good to hear a positive

in your opinion what would you say gave the best picture of what was going on in your body. CT scan, MRI or PET  scan.  I have lost faith in CT and MRI scans but have never been offered a PET scan, which one picks up the smallest cells, im getting confused

Sharon xx

Re: I am a stage 4 tongue cancer survivor

21 Jul 2012 22:29 in response to Sharon

The PET scan picks up hot spots in your body.  Inflimation and rapid cancer activity show as hot spots.  My PET scand showed how active the cancer was once they found it.  It also showed some activity from an old injury (inflination, not cancer) as well.

CT's and MRI are the tools to find the tumor in the first place.  Go easy on the CT's as they can throw more radiation that we think.

Then you need to have a biopsy to see if it's cancer or something else and we always pray it's something benign.

Don't know if this helped any but it's the best I can do since I'm not a Dr.

Re: I am a stage 4 tongue cancer survivor

21 Jul 2012 22:34 in response to Moderator Jane

A lot of it is attitude.  I told my wife I didn't want to know what stage it was or what my odds were.  I told her she could tell me after I got better.  I did the chemo and radiation but I also did meditation and took spirulina (it's a organic seaweed) to combat the effects of the radiation.  I also took a product called pectasol-c to help me get my nutrients when I was on the feeding tube.

I'm still taking the pecatol-c and spirulina (but in lower doses).  The pectasol-c is expensive but I think living is worth the expense.

Re: I am a stage 4 tongue cancer survivor

22 Jul 2012 19:21 in response to Kjar53

I think its fair to point out that this is a UK website and that treatments/procedures etc may be a little different in UK - plus of course we have a National Health Service,

so charges etc are a LOT less than in USA.

Re: I am a stage 4 tongue cancer survivor

4 Feb 2014 08:45 in response to Kjar53

hi kijar, im jo frm indo,  was wondering if you also had dry very dry sticky mouth when first symptoms came along with you taste loss? thankssss

Re: I am a stage 4 tongue cancer survivor

4 Feb 2014 15:16 in response to joseoz2005

no, I don't recall having any other symptoms at the onset. I had a loss of taste first followed by wax buildup in my ears (never had it before mor since) that the Dr had to remove, then a pain under my ear to help the Dr's misdiagnose me as TMJ and finally nmy tongue started to look green.

Re: I am a stage 4 tongue cancer survivor

4 Feb 2014 18:04 in response to Kjar53

hi kijar, thanks for the quick reply, which part of your tongue the tumor was found? and you said it was too large(inoperable) but if it was so large why you couldnt notice it that something that large is attach to your tongue? thankss sorry for many questions

Re: I am a stage 4 tongue cancer survivor

11 Feb 2014 20:58 in response to Kjar53

hi my name is Donna i had the operation for mouth cancer in Oct 2013 and would like to know if you have any tips about eating i still cant eat and still being fed by a rigg 

Re: I am a stage 4 tongue cancer survivor

12 Feb 2014 18:04 in response to murraydonna982

Sorry, I don't have anything for you.  Because I was stage 4 it was inoperable.  I guess they could have removed my tongue but then my quality of life would have been hell.

Re: I am a stage 4 tongue cancer survivor

12 Feb 2014 18:06 in response to Derek2431

You are correct.  Now that we have Nationalized health care here we probably won't get much in the way of good care anymore, unless you have the big bucks to pay for it.

Re: I am a stage 4 tongue cancer survivor

12 Feb 2014 21:11 in response to Kjar53

Hi Kjar53 and Donna

There is another discussion about tongue cancer here Donna.

It might be worth asking the same question on the other thread.

There has been some discussion on what to eat among people posting there.

Also, you could speak to our nurses who will be able to advise you.

You can contact the team on: 0808 800 4040 from Monday to Friday, 9am to 5pm.

Calls are free from UK landlines and most mobile phones.

Best wishes

Jane

Re: I am a stage 4 tongue cancer survivor

13 Feb 2014 09:54 in response to Kjar53

hi kijar, please reply my last questions if possible, im still having the symptoms you had which is strange taste and my mouth feels so weird, but the ent surgeon had done endoscope through my mouth nose and ear all the way down to my voice box they didnt find anything suspicious, where your tumor was found? i need somebdy's advice please , should i get mri or ct scan done to make sure nothing is wrong with me ? i would appreciate for any advice thanksss

January 2008 - Another MRI of my head and neck this time.  They found something but don't know what it is.  ( which part of your tongue they found smething abnormal? could you see it on the mirror?

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)

Re: I am a stage 4 tongue cancer survivor

13 Feb 2014 10:22 in response to joseoz2005

Hi, Jose

I can see you are really worried about your symptoms, which seem to be a very dry mouth and strange taste. I'm no expert, but dry mouth suggests a salivary gland problem (not tongue cancer, particularly).

You say you are "in Indo", I don't know where you mean, exactly, but I will assume that you could ask a doctor for an MRI or CT scan of head, to see if you have any unusual structures that are not visible to the naked eye?

But, you may well be getting over-anxious about something which will turn out NOT to be a malignancy. My best advice would be to try to get it investigated, if you're still having symptoms; butm at the same time, try not to worry until you know you have something to worry about.

I hope this is helpful

Best regards

Bron

(head and neck cancer treated 2009, only symptom - painless lump in neck)