I have something to say... hope it helps someone.

[rktmanfj]

Some of you guys already know a lot of this, but I suppose it's time to put it out there.

In August 2014, I was looking forward to the upcoming ECFR when I developed a sore throat.  When it didn't get better in a few days, I saw my doctor, who prescribed antibiotics, and it got better.  After I returned from Tellico, however, the soreness returned, and I went back to the doctor and was prescribed another round of antibiotics, which took care of it.  At least it did for a couple of weeks or so, and the symptoms returned again.  My fiancee Susan offered me a Z-pak that she happened to have on hand. Thinking that it was just a stubborn infection, I took the meds again, with the same result.

By this time it was getting to mid-November, and I decided to see a different doctor at another clinic.  This doctor ran an instant strep test, which was negative.  Finally, after examining my throat three times, she finally said "I think you need to see an ENT".  After prodding her for a few minutes as to why she thought this was necessary, she looked me straight in the eye and said "I think you might have throat cancer".  However, I was unable to get an ENT referral in a timely way in that hospital network, and knowing I could get one at the original clinic, I returned there and insisted on seeing a different MD.

When the new doctor had listened to my story and examined me, he asked to be excused for a moment, and returned with a colleague, who also examined me. They both also agreed that I needed to see an ENT, which I did the next day.  That ENT scoped me and said that he only saw a 'small red sport', and I was going to be okay.  Upon reporting this back to the referring MD, he was upset, and immediately scheduled me  for a CT scan.  After the scan, I went to my part-time evening job.  I was only there for about 45 minutes when I received a call from the MD himself, who asked me to leave work and go directly to the 6th floor of the hospital, where I was to be directly admitted.  I did so, and was seen by one of the attending MDs who told me that I had a 3x5x6 cm growth in my throat, which was in serious danger of obstructing my airway.  I found this hard to believe, as I was still working out 3-4 times a week, and had played 3 hours of volleyball pretty much non-stop just the night before.  I was kept at the hospital for a couple of days before it was determined that the risk of airway blockage was not as dire as the CT looked. I was told at this time that while they now knew that I had cancer, I definitely did NOT have lymphoma.

Things began to move quickly at this point, and a biopsy was taken of a couple of lymph nodes on the side of my neck.  I was diagnosed with HPV16 positive  Squamous Cell Carcinoma of the left tonsil (which had been removed 12 years prior).  If every cell of a tonsil is not removed, it can grow back, and it's a fairly common occurrence.  In my case, however, I had picked up the Human Papilloma Virus, of which there are over 100 strains.  Of these, I was unlucky enough to get HPV16, the worst of them all.  It caused the malignancy in the regrowth of the tonsil.

HPV positive cancer is highly curable (84%) in non-smokers when caught relatively early, and even though mine had advanced to Stage 4, my doctors are some of the best available, and they seemed very confident that we could beat it. After going through many preparations, including many tests, and placement of a feeding tube, the treatments began in mid-April.

The standard for treating this kind of cancer is 7 weekly treatments of platinum-based chemotherapy (Cisplatin), along with 35 radiation treatments.  It was a brutal treatment, and the side effects were very difficult.  My rad doc later told me that I had taken more grays than he had ever given a neck cancer patient in his career.  I ended up being on a feeding tube, with neither food nor drink for 4 months, as the inside of my throat was burned black.  When diagnosed, knowing a bit of what was in store, I had made a restaurant tour, eating all my favorites, and managed to push my weight up to 260 pounds before the treatment began.  After having trouble with the feeding tube, my weight ended up dropping from 260 to 188 in just a short few weeks, and I was hospitalized with dehydration and the weight loss.  IV fluids were forced, and a new feeding tube was placed into my small intestine (4 times before they got it right) and liquid food was pumped in. The treatments continued, with daily ambulance rides over to the cancer center.  After 10 days, I was sent home (mostly because of my constant campaigning for it) with a pump for the feeding tube.  This was not the best thing, as even though I had the comforts of home, I did not have anyone with me through the day for many of the little things one takes for granted.

Mid-May through early August was mostly spent on the couch under piles of blankets, because of extreme fatigue, and that despite it being the middle of summer, I was freezing.  Being cold and fatigued were serious problems.  My weight had climbed back to 220, until the feeding tube was removed, and my appetite suddenly vanished, and weight went back to 200.  Around the end of August, it was finally found that the radiation had not killed my thyroid as thought, but had caused my normal testosterone level (>200) to drop to 30.  With therapy for the problem, the energy level quickly returned.

By late August, I was finally feeling much better, and looking forward to moving on with my life.  My August PET scan only showed inflammation in the area of the original main tumor, and that was simply that the tissue there had not healed completely from the radiation (my rad doc told me I had taken 'more radiation than he had ever given anyone in his career'), and a subsequent scope inspection of the area showed no evidence of disease.  My radiation doc and my surgeon told me they felt I was in remission.  I was feeling great, good enough that the ECFR was suddenly doable, and I had a great time there, receiving hugs and warm greetings from everyone.  I was able to ride a bit over 700 miles in three days.

However, by mid-October, things had changed, and I just sensed that somehow, something wasn't quite right, and I asked that my previously scheduled PET scan for early November be moved up.  I had it a week ago Friday, and received the results on Tuesday, and the prognosis from the medical oncologist on Wednesday.  Despite the previous PET scan and claim of remission, the cancer has metastasized to my lungs in about 20 spots.  It is too diffuse for radiation, and it is inoperable.  Only chemotherapy is available.  If I choose no treatment, I might live 6 months.  If I choose to have him treat it, a year, perhaps a bit more.

There is a clinical trial at the University of Cincinnati for which they think I would be a excellent candidate.  My medical oncologist has been in contact with them,, and has me scheduled for a day-long round of chemo, and install a port within the next couple of weeks.  These two items will get me qualified for the trial, and perhaps I will be admitted to it.  No telling if I will be, or if I am admitted, whether or not I would even receive the new drug, or what time it might buy.  In all honesty, even if it does, studies aren't about the participants, they're about the ones who come down the road after.

So, there it is.

Why post this here, and in such detail?  HPV is out there in huge numbers (some estimates say that 70-90% of adults carry it), and it's causing an epidemic of head and neck cancer in men of the age group of what I would guess to be the majority of the members here.  There's no cure for it, though some people's immune system wipes it out, and some do not. If putting my story out there causes only one guy here to learn more about it and saves him from a similar fate, it was worth my time.

Be informed... protect yourself.

On the bright side, Susan and I have decided to move up our plans to get married.to December 12th.  Hell, it's not like it's a long term proposition for her or anything, heh.  

We're supposed to have some well above average and clear weather in the region next week.  Screw it... I'm going riding for a couple of days.


Randy T
Indy

[Capn Ron]

Randy,

Thank you for posting this...it's such a personal story.

Over the years, I've read your posts here and thought, "Damn...I gotta meet that guy!"  I was happy to meet you at this last ECFR and we had some great chats.  You opened up a bit about what you've been going through and I honestly can't even imagine what that must be like.  When I got back, I was talking with another FJ guy and he asked me If I had met "Not a Lib" at the ECFR...I replied that I had no idea, but I really wanted to...there were so many new faces there...a lot said they weren't active on the forum and in just a few short days, I wasn't completely sure who I'd met.  He said, "Well, his name is Randy Thompson...?"  Oh, hell yeah!  So, I did meet "Not a Lib"!!!  ...And I found him to be a most righteous dude.   

I wish you all the best getting through this...and anytime you want to ride, I'm there!

[Urban_Legend]

Thank you for sharing Randy

My thoughts and prayers go out to you. I do hope that your marriage is a lot longer than anticipated. Your story sounds very similar to my brother-in-law who fought bowel cancer for 2 1/2 years (18 months longer than they thought he would make). Don't let anyone stop you from doing what you love doing, just because you have cancer doesn't mean you should stop living.

You sound like you have an excellent support group around you. Use it. Ask for help if you need it.

Mark

[rlucas]

Wow, Randy. Just wow.

You're one of the first people I met at my first-ever Rally in Boone, and the Indy MotoGP weekend that you hosted stands out as a highlight in my riding life.

Thanks for sharing that. I knew a little about the situation but nothing in detail. I'm not a believer and I don't pray, but you have my whole-hearted support. I firmly believe that, whatever the outcome, you've got good karma stored up by the bucketful.


rossi

[big r]

That really sucks. Thoughts and prayers for you. I lost my Mom to throat cancer about 12 yrs. ago. She took it in stride an continued on with life to the very end. Hope you are as well as can be and ride on Enjoy the KOOKALOO. Big R

[gumby302ho]

 I hate the C word, my father inlaw suffered from lung cancer. I believe we are here for a good time but not along time. Cancer is not racist, it takes us all from little kids to babies to 80 year olds of all walks of life. My heart goes out to you and yours. When I would see your name Not a Lib come up on this site I always wondered why you are not a liberal for I am, I always wanted to have a discussion on the political side of things to get your perspective on world matters. Keep fighting the good fight Randy, you must be a stubborn strong man of character to get through the suffering thus far.
Don

[Mark Olson]

Randy T,

Thanks for posting , Many of us have health issues that we let go for far too long before seeking help..

I have a saying I have been using for over 20 years .." it's not real till it happens to you".  

I would say just get married now as time is precious ..

Sending good karma your way.  

 

[stvmac]

Some of you guys already know a lot of this, but I suppose it's time to put it out there.

In August 2014, I was looking forward to the upcoming ECFR when I developed a sore throat.  When it didn't get better in a few days, I saw my doctor, who prescribed antibiotics, and it got better.  After I returned from Tellico, however, the soreness returned, and I went back to the doctor and was prescribed another round of antibiotics, which took care of it.  At least it did for a couple of weeks or so, and the symptoms returned again.  My fiancee Susan offered me a Z-pak that she happened to have on hand. Thinking that it was just a stubborn infection, I took the meds again, with the same result.

By this time it was getting to mid-November, and I decided to see a different doctor at another clinic.  This doctor ran an instant strep test, which was negative.  Finally, after examining my throat three times, she finally said "I think you need to see an ENT".  After prodding her for a few minutes as to why she thought this was necessary, she looked me straight in the eye and said "I think you might have throat cancer".  However, I was unable to get an ENT referral in a timely way in that hospital network, and knowing I could get one at the original clinic, I returned there and insisted on seeing a different MD.

When the new doctor had listened to my story and examined me, he asked to be excused for a moment, and returned with a colleague, who also examined me. They both also agreed that I needed to see an ENT, which I did the next day.  That ENT scoped me and said that he only saw a 'small red sport', and I was going to be okay.  Upon reporting this back to the referring MD, he was upset, and immediately scheduled me  for a CT scan.  After the scan, I went to my part-time evening job.  I was only there for about 45 minutes when I received a call from the MD himself, who asked me to leave work and go directly to the 6th floor of the hospital, where I was to be directly admitted.  I did so, and was seen by one of the attending MDs who told me that I had a 3x5x6 cm growth in my throat, which was in serious danger of obstructing my airway.  I found this hard to believe, as I was still working out 3-4 times a week, and had played 3 hours of volleyball pretty much non-stop just the night before.  I was kept at the hospital for a couple of days before it was determined that the risk of airway blockage was not as dire as the CT looked. I was told at this time that while they now knew that I had cancer, I definitely did NOT have lymphoma.

Things began to move quickly at this point, and a biopsy was taken of a couple of lymph nodes on the side of my neck.  I was diagnosed with HPV16 positive  Squamous Cell Carcinoma of the left tonsil (which had been removed 12 years prior).  If every cell of a tonsil is not removed, it can grow back, and it's a fairly common occurrence.  In my case, however, I had picked up the Human Papilloma Virus, of which there are over 100 strains.  Of these, I was unlucky enough to get HPV16, the worst of them all.  It caused the malignancy in the regrowth of the tonsil.

HPV positive cancer is highly curable (84%) in non-smokers when caught relatively early, and even though mine had advanced to Stage 4, my doctors are some of the best available, and they seemed very confident that we could beat it. After going through many preparations, including many tests, and placement of a feeding tube, the treatments began in mid-April.

The standard for treating this kind of cancer is 7 weekly treatments of platinum-based chemotherapy (Cisplatin), along with 35 radiation treatments.  It was a brutal treatment, and the side effects were very difficult.  My rad doc later told me that I had taken more grays than he had ever given a neck cancer patient in his career.  I ended up being on a feeding tube, with neither food nor drink for 4 months, as the inside of my throat was burned black.  When diagnosed, knowing a bit of what was in store, I had made a restaurant tour, eating all my favorites, and managed to push my weight up to 260 pounds before the treatment began.  After having trouble with the feeding tube, my weight ended up dropping from 260 to 188 in just a short few weeks, and I was hospitalized with dehydration and the weight loss.  IV fluids were forced, and a new feeding tube was placed into my small intestine (4 times before they got it right) and liquid food was pumped in. The treatments continued, with daily ambulance rides over to the cancer center.  After 10 days, I was sent home (mostly because of my constant campaigning for it) with a pump for the feeding tube.  This was not the best thing, as even though I had the comforts of home, I did not have anyone with me through the day for many of the little things one takes for granted.

Mid-May through early August was mostly spent on the couch under piles of blankets, because of extreme fatigue, and that despite it being the middle of summer, I was freezing.  Being cold and fatigued were serious problems.  My weight had climbed back to 220, until the feeding tube was removed, and my appetite suddenly vanished, and weight went back to 200.  Around the end of August, it was finally found that the radiation had not killed my thyroid as thought, but had caused my normal testosterone level (>200) to drop to 30.  With therapy for the problem, the energy level quickly returned.

By late August, I was finally feeling much better, and looking forward to moving on with my life.  My August PET scan only showed inflammation in the area of the original main tumor, and that was simply that the tissue there had not healed completely from the radiation (my rad doc told me I had taken 'more radiation than he had ever given anyone in his career'), and a subsequent scope inspection of the area showed no evidence of disease.  My radiation doc and my surgeon told me they felt I was in remission.  I was feeling great, good enough that the ECFR was suddenly doable, and I had a great time there, receiving hugs and warm greetings from everyone.  I was able to ride a bit over 700 miles in three days.

However, by mid-October, things had changed, and I just sensed that somehow, something wasn't quite right, and I asked that my previously scheduled PET scan for early November be moved up.  I had it a week ago Friday, and received the results on Tuesday, and the prognosis from the medical oncologist on Wednesday.  Despite the previous PET scan and claim of remission, the cancer has metastasized to my lungs in about 20 spots.  It is too diffuse for radiation, and it is inoperable.  Only chemotherapy is available.  If I choose no treatment, I might live 6 months.  If I choose to have him treat it, a year, perhaps a bit more.

There is a clinical trial at the University of Cincinnati for which they think I would be a excellent candidate.  My medical oncologist has been in contact with them,, and has me scheduled for a day-long round of chemo, and install a port within the next couple of weeks.  These two items will get me qualified for the trial, and perhaps I will be admitted to it.  No telling if I will be, or if I am admitted, whether or not I would even receive the new drug, or what time it might buy.  In all honesty, even if it does, studies aren't about the participants, they're about the ones who come down the road after.

So, there it is.

Why post this here, and in such detail?  HPV is out there in huge numbers (some estimates say that 70-90% of adults carry it), and it's causing an epidemic of head and neck cancer in men of the age group of what I would guess to be the majority of the members here.  There's no cure for it, though some people's immune system wipes it out, and some do not. If putting my story out there causes only one guy here to learn more about it and saves him from a similar fate, it was worth my time.

Be informed... protect yourself.

On the bright side, Susan and I have decided to move up our plans to get married.to December 12th.  Hell, it's not like it's a long term proposition for her or anything, heh.  

We're supposed to have some well above average and clear weather in the region next week.  Screw it... I'm going riding for a couple of days.


Randy T
Indy

Hey Randy
Never heard of HPV but it sucks. ...If ya want to come to Ireland for your honeymoon. I have an FJ I haven't sold yet and won't. Go see the country it will be cold but.....best wishes and good luck.

[The General]

Some of you guys already know a lot of this, but I suppose it's time to put it out there.


Why post this here, and in such detail?  HPV is out there in huge numbers (some estimates say that 70-90% of adults carry it), and it's causing an epidemic of head and neck cancer in men of the age group of what I would guess to be the majority of the members here.  Be informed... protect yourself.

On the bright side, Susan and I have decided to move up our plans to get married.to December 12th.  Hell, it's not like it's a long term proposition for her or anything, heh.  

We're supposed to have some well above average and clear weather in the region next week.  Screw it... I'm going riding for a couple of days.

Randy T
Indy

Well mate, you`ve got a lot of friends riding with you from all around the Globe. Take a glance, we`re just there on your left hand shoulder. It`s the closest spot to your heart where we can hang on, see your way and where your coming from.

I had no idea of the prevalence nor repercussions of HPV, so thank you for making this family aware. (Spent some time researching and couldn`t believe my ignorance.)

December 12th is now especially marked in my Calendar. A truly beautiful day. (pics?)

It`s also Frank Sinatra`s birthday, a ridiculous detail I know, but shit a lot of his songs apply to you. 

   

[Yamifj1200]

Randy,
I have known you for years brother. I'm sorry to hear of your situation and know you will do all you can to make the best of your life.  I am wishing you all the best and congrats on your wedding.

Eric M

[anson45]

Randy T.
Thank you for sharing.
Congratulations to you and Susan.
Good luck,
Anson

[FJ_Hooligan]

Randy,
I am so sorry and saddened to read this.  I have no words.  As you know this hits very close to home for me.

I'm proud to call you a friend...

DavidR.

[novaraptor]

Here's hoping for many more miles and ridin' smiles to you.

[red]

Randy T,

Man, that's tough.  Here's hoping for the best, for you.

Riding or no, keep in touch with your friends here.

Red

[Firehawk068]

Dammit Randy.............
This sucks to hear about. I can't even imagine how hard it must be on you, and your family.
I've never met you, but some of my friends speak very highly of you.

Here's to hoping you pull through, and we all get to see you at the Colorado Rally next June!