i lived in jungle of costa rica last 4 years
before that all over the world ski instructor

Oct 07 up in Maine USA told doctor lump in neck size of grape told to keep an eye on it. seemed to go down.

December 07 moved to rhode island usa just before xmas neck mass blew up size of walnut.

January 3 went to emergency room got cat scan chest xray blood work and a Tuberculocous PPD test 72 hours later TB test was positive.
Was sent to TB clinic doctors said classic TB Lymphendentis 99% sure nothing to worry about
went on TB meds
2 months (end of feb.)go by its getting bigger told its supposed to thats good.
Another month of bugging them its getting bigger size of a lime finnaly they get me a
guided FNA and it comes back positive squamos cell carcinoma.

They told me april 9th a month ago yesterday that same day they sent me to an onocological surgeon he took one look in my mouth an said tonsil cancer and base of tongue. He said to big or advanced to operate he would set me up with medical oncologist and radiation oncologist. And i had to get a pet scan.
Well i took a month to get the pet scan ( got it wed.) the other doctors didnt want to give me an appointment till pet scan results were in.
I had an a appointment with medicasl oncologist friday. He tried to cancel because pet scan wasnt in yet. I told him i have been just left hanging for a month not sleeping please i have to talk to someone. So he met with me.

His guess at what he wants to do pre pet scan is.
6-8 weeks carboplatinum/taxol/erbitux
then 2 weeks rest
then 8 weeks radiation plus carboplatinum/taxol
then 4 weeks rest then surgery

But im being treated with TB medicine and he thinks the sterids you have to take with that chemo mix will mess with my TB medicine
So he said he would then have top go with the chemo mix of taxotere/platinum/5FU

I only have state of rhode island blue cross blue shield and Medicaid.
I have been unable to find an oral surgeon to accept it I have gotten supervisors working on it and they still cant find me one.

Then i was just told it was poorly differenciated Squamos cell carinoma with is aggressive and they just left me hanging for a month.
How am i gonna get a second opinion when i cant get a first.
I guess because i only got state insurance nobodys really hustling im sure they have lots of desperate people like me.
But ive got a two year old son i have to fight for.
My neck mass is getting to be the size of a lemon medical oncologist who i met yesterday wasnt very friendly it was more like this is want i do , i can handle that. But he just gave me and appointment for May 22, 2 more weeks of my mind killing me no sleep they gave me a perscription for ambein it aint working i need to be sedated.
Anyway i know this a is a hard time before the fight and ive got teeth removal and peg tube and mediport coming. I had to call back and ask the doctors secretary to call me to let me know the results of the pet scan when they come. I remembered after i left the 20 minute meeting i had with him.
Anyway i will be around and promise not to be in this mood all the time
That you Victor Brown. my email is vb53@cox.net

in my post i wrote... i took a month to get my pet scan .. i meant to write IT took them a month to get me a pet scan

Hi victor, welcome to the club. I hope things pick up for you soon. Hagg.

Hi Victor
Welcome. You sound like you have been through a lot already. This is a good place to get support and ask questions as you progress with treatment - the people on this board are some of the kindest I have ever come across. Let us know how you get on at the appointment on the 22nd and I'll be thinking of you.

hi victor
good luck with all your treatments i hope you find all the answers you need to your questions,good luck with your journey and welcome to the site. love shirl xxx

Hello Mr Victor, your posting caught my eye, what stage you in today. Why your posting caught my eye, well I interpreted similar surroundings and diagnosis to myself, some months back. I was in Thailand jungle for 2 years, with close proximity to sea. For diving.

Today I am counting the days, not true, I am about to try and start a briggs abnd Stratton rotorvator to do the garden and get some seeds sewn, while weather is sunny.

Yes its a tough one this mate I know, sure you'll be fine tho, in time. I'll be posting more on this site about my situation later.

Meantime, "when the going gets tough the tough get going" Bryan Adams. (anyone can show me how to add a soundtrack like they do in facebook.

Dear Nigel,
Though I did post a welcome note to you, I did read your posts and like your positive attitude. Your advetures in the jungles of Thailand must have been something really special to you. Have you noticed whenever you have something special going for you - someone or something trips you over. I have seen it happening in my case at least.

It will be good to read your future postings - meanwhile I prefer "The eye of the tiger" from the Rocky series.

Take care,
Ananth
PS: you may read about yours truly if you click on "Ananth's story" on the main page under survivors.

thanks everyone for every post. Nigel i lived out in the south pacific mountains of costa rica. Grew my own food raised my own chickens,
neighbors and i went to town once a month for rice salt cooking oil and sugar. Had to park truck on other side of river then horseback up amountain home. Main reason i lived and stayed there was no misquitos. Not one meter of level ground in my valley so no breeding for misquitos. I was up in the moutains so it was cool at night. As soon as i beat this and can ride my horse again i will be back.

Im am stage 4 with a 3 cm tonsil started going into base of tongue and a huge 7cm x5x5 lemon size lymphnode.
So they are going with 9 weeks of chemo to start taxol carboplatinum and erbitux
then 8 weeks of radiation
then 4 weeks rest then surgery.
My doctors suck i know they are probibly busy.
But its to late to change now.
I lived all over europe for 12 years i was a ski instructor in switzerland in the winters and worked music tours during the off season as a sound tech. But the noise of a hard rain on a tin roof is just so calming for me.
How i miss a nice warm rain and my orchard of marmonchinos thats lechi nuts to you.
Im in Rhode Island USA now
Thanks for writing i am a waterfall freak thats why i chose costa rica.
Victor Brown

A up Victor, you doing alright? just thought I'd ask as I haven't seen anything from you for a while.

Here in UK it is amazing weather, however must keep out the sun tho being 2 weeks into chemo and radio. Just a bit tired today thats all.

Trust you doing well. Nigel

A up Nige, do you think they will be familiar with that phrase in Rode Island Great to hear you are doing so well. Keep it up!

thanks for checking up on me Nigel.
Angie i am familar with the a up. Lived with a few brits. I worked ski resorts in switzerland for 8 years and lived in holland for 4 years.
(Holland just for business and tax purposes was basically on the road all thru europe those 4 years)
Chemo started last thursday once a week for 6 weeks. I think the zofran anti nausea stuff worked real good i real didnt feel anything.
That and the steroids. Boy did those steroids make me hungry i couldnt stop eating.
Tommorrow is my next chemo.
Ididnt want to jinx myself by writing im fine and dont feel a thing.
Im starting to get a little erbitux rash.
Dont know if i have chemo brain or just sleep deprivation.
Thanks i will write something more cohearent
later Victor

OK Victor -....I don't know how the cancer found you with as much as you 've been around...a real moving target you are.

get better

bob