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#519506 - 03/16/19 02:17 PM Cancer
LINCinNYC Offline
Imperial_AS_Kicker

Registered: 09/05/01
Posts: 3400
Loc: The Big Apple
Hello KA Family-
Some of you are in the know, and my apologies to everyone else for not posting any sooner, but there has been a lot to process for me in the last two months. What I had feared did occur, but there is great hope.

I got a tongue cancer diagnosis in January. An ulcer had been growing for a number of months on the right side of my tongue. I thought my sharp molars had cut it and had them ground down, but it just got worse. After my father passed I saw specialists and did a biopsy. Squamous cell carcinoma. I found a medical team at Weill Cornell/NY Presbyterian in NYC and had surgery on February 11. The surgeon successfully cut out the tumor and removed 32 lymph nodes from my neck. I spent two weeks recovering and was able to return to work.

The good news is he got the whole tumor, which was 8mm deep, with clean margins of error, and all the lymph nodes were clean. I had done a CT and PET scan that showed no other involvement in my body but he suspected microscopic involvement. So he took out the nodes after a pre-operation radiation test where he tracked how it flowed from the tumor through the lymph system.

As a precaution, he recommended radiation, and I started treatment on Thursday and will go for six weeks. I am worried about side effects, I must brush my teeth regularly with prescription toothpaste, and could get mouth sores or skin burns. The radiation equipment is the latest high tech however, and takes ten minutes at a time. I wear a funky mask and this giant scanner sweeps around my head a couple times.

Admittedly, drinking beer for decades, many times to self medicate for AS pain (as you can read about in the KickAS Stories section) is the probable cause, but 15 years of Enbrel's effects on my immune system could have played a role, and my rheumy told me to stop. I've been off for three months (had to stop from bronchitis, now for good). I think that is it for biologics, and am taking advil and dieting and trying to boost my immune system.

Several years ago I weighed 245 pounds, but six months ago I started dieting and losing weight, and it hurt to eat with my tongue in pain. I'm now under 180 after the hospital stay, and aim to keep at that weight and stay fit.

I've had a ton of support from family, friends, and coworkers, and overall am feeling blessed. My apologies again for not posting earlier, there has just been a lot to process and time just slipped away. Thank you to everyone in my KA family, I found this place when there were 200 members, and it's been amazing to watch KA grow. You all ROCK, never forget!!!!!

I promise to keep you updated. Anyone with info to share please do, either here or messages or at lincolnob@hotmail.com
Peace
Linc
_________________________
Linc O'Brien

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#519507 - 03/17/19 04:09 AM Re: Cancer [Re: LINCinNYC]
Cymro Offline
Active_Member

Registered: 11/01/18
Posts: 55
Originally Posted By LINCinNYC


Anyone with info to share please do,



I doubt if my experience of radiotherapy will be of use to you but as it also concerns A.S. you might find it of interest. Radiation treatment was at one time used as a so called miracle cure for A.S. To my knowledge here in the U.K. it was used from the early 1960s to the 1980s. In my case it did no good as far as the A.S. was concerned. In fact it did me long term damage as I now all these years latter suffer from nerve damage neuropathy. I had been warned that there was a risk of it causing cancer but I doubt if anyone had at that time realised the risk of nerve damage. I found the actual radiation treatment easy enough. There was some burning of the skin and diarrhoea where the radiation had touched the bowel but otherwise no ill affects. I wish you all the best with it and remember to let us know how you get on.


Edited by Cymro (03/17/19 04:10 AM)

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#519518 - 03/19/19 10:30 PM Re: Cancer [Re: LINCinNYC]
mulehound Offline
Commanding_AS_Kicker

Registered: 04/27/09
Posts: 697
Loc: USA state of Utah
Your post hits home, I wish you the best good thoughts coming your way.
ETTE
Darrel

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#519583 - 04/19/19 08:14 AM Re: Cancer [Re: LINCinNYC]
LINCinNYC Offline
Imperial_AS_Kicker

Registered: 09/05/01
Posts: 3400
Loc: The Big Apple
Hi KA family
I’m almost done with radiation! The 24th is the last day. The side effects have caught up to me. Bad mucositis in my mouth and sunburnt neck. I’m taking narcotics for pain relief. On a liquid diet of high calorie protein shakes and trying to maintain 170 pounds!
But I’ve made it to work. We are now on spring break (I teach special ed) so that is good. I will go to the art museum and a concert tonight. In the past two weeks I would come home and go to bed but I feel rested up.
The radiation effects will linger for weeks and I’ll keep you posted. I’m hoping for the best. I’ve permanently stopped biologic meds and and will stay vegetarian as much as possible.
Peace, you Rock, never forget!
Linc
_________________________
Linc O'Brien

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