The bad news finally hit

tbone1

So, I haven't been here for a while because I've been busy. My new scans in April confirmed lesions in my liver. A biopsy confirmed that my ocular melanoma has gone metastatic. That means I have less than a year. It sucks royally, but it's been just shy of seven years since first detection, and for Class 2 OM, the median time before metastasis is three years. I've been playing with house money for quite a while.

So if I don't see you again, thanks for everything, and give Boo a pinch on the cheek for me.

JuliusBorisov

That's harsh. Stay strong, @tbone1! We're all behind you!

OrlonKronsteen

So very sorry to hear this, tbone1. My thoughts are with you.

Raduziel

Three years average.

Seven year living.

Everyone dies but only heros dies fighting.

I salute you.

DreadKhan

That's pretty harsh, I hope the experience is as pleasant as it can be, given the circumstance.

ThacoBell

Seven years? That is badass (pardon my french). Its incredibly harsh to know how much time you have left, but not only did you kick butt, you kept a sense of humor the whole way. I'm definitely behind you the whole way, if you ever feel the need to talk or rant or what have you, I'm here.

semiticgoddess

@tbone1: We've long enjoyed your presence on this forum. You're a dear friend to all of us, and you will be missed. It'll be sad to see you go, but just know that you've made our lives a little brighter in the time you've had with us.

These last few months will be precious. I hope you can make the most of them, even if that means more time IRL with family and friends, and less on the forums.

dunbar

@tbone1 it sounds like your head's in a good place and for that I commend you - I hope you can keep it that way.

tbone1

Thanks, everyone. We’ve scheduled an appointment with the doctor who ran my clinical trial at MD Anderson back in 2013. We’ll see how it goes; the most effective treatments are also the most toxic, so we need to consider risk/reward on top of everything else

dunbar

The whole risk/reward thing is a very difficult decision to make. I was given three options when I was diagnosed with (a comparatively trivial) cancer and being asked whether you want to trade off functionality for life expectancy is a tricky one.

BelleSorciere

Best of wishes @tbone1 - You've beaten the odds so far. I'll hope that this continues.

Skatan

I can't begin to understand what you are going through, so I will just settle with wishing you all the best whatever you may face and hope that you will remain strong throughout. Family comes first, so I hope you have yours close to you and have lots of time and joyful moments together with them. I also hope you have time and energy to cross off a few items on the ol'bucket list.

tbone1

Thanks @BelleSorciere and @Skatan . Last week and this week my wife and I flew to Houston and Philadelphia to see what can be done. There are some promising things that might slow down the metastasis, maybe even pause it, but that's the best for now.

And the worst part is that both trips got messed up because of weather. I won't even begin to tell you about the joys of flying, because there are none.

Sar_Yehudah

I'll pray for you!

tbone1

So, I got into a clinical trial ( https://clinicaltrials.gov/ct2/show/NCT03068624 ) at MD Anderson in Houston. I had four incisions in my abdomen to extract the tumors. That’s actually not that bad, they were prepared to do seven! And it was entirely laparoscopic, so the recovery time will be quicker.

We checked out the hospital today; I have to be back for appointments on Thursday and Friday, so we’re staying in Houston this week. Fortunately the Cancer Support Community gave us a grant to stay in an AirBnB, so that’s one less worry.

Right now I am as sore and pained as hell and cannot get comfortable. But they’ve started the process of harvesting and multiplying the Tcells. At least Part 1 is over

BelleSorciere

Here's hoping this works out! Glad you were able to get into a clinical trial as well.

ThacoBell

I wish you both luck and stubborness to beat this.

Quickblade

Good luck, I went to MD Anderson when I was 18 for an unusual testicular cancer. Though caught as a stage 1 and most likely cured by surgery alone, it was unusual in some parts of the tumor were converting to another form of cancerous tissue (rhabdomyosarcoma, a type of muscle cancer). This generally presents in very young children, not adults so I went through 6 cycles of chemo, in a mix for both types.

On the whole, chemo wasn't too bad, but I was a pretty healthy 18 year old. I lost 30 pounds in 4 months, and even after more than 17 years, I still haven't gotten all that weight back up.

Fortunately, my mother had very good insurance, and years later it made the Obamacare/ACA matter very personal for me when I found out that my private insurance after I got too old to stay on my parent's insurance had a rider that I was not to be covered for ANY cancer of ANY type, and that company was not even the one that sucked up the loss that I estimate was at LEAST a quarter of a million dollars. When I found that out I dropped that "grandfathered" garbage plan for a new plan that met ACA requirements.

So "pre-existing conditions" coverage is something I take very, very, VERY personally now.

Yeah, you're making me remember the seemingly endless appointments I had. My first day there for tests, I remember that ran for like 10 hours, from 10 a.m. or so to 8 p.m. CAT scans, X-rays, blood draws, radio-dye bone scans...

And every check up was another blood draw and X-ray and CAT scan. It was because of this I found that you can only stick a vein so much so often before it just scars up for awhile and you can't draw blood out of it.

Again, good luck to you.

tbone1

Well, I'm back home. On the 20th I had laparoscopic surgery to extract cancer cells and harvest the T cells. They made four incisions in my abdomen, including one where the surgeon had to insert her hand to move the gall bladder. (Thankfully, the surgeon was a small asian woman, not a large nordic man descended from village blacksmiths.) And this was lucky; they had to prepare me for seven incision, one of which would have laid me open like a sturgeon in a caviar factory.

It was rough, but so far the recovery hasn't been too bad. My wife got us an AirBnB near Galveston Bay for a few days after I was checked out and before I was cleared to fly. My brother flew in for four days to help out my wife and to just spend time together. He went with us to the hospital for my follow up and wheeled me back to the phlebotomist. When she pulled out thirteen vials, he was shocked. I said "Have I mentioned that I sometimes look borderline anemic? And have dreams of being a strawberry milkshake?"

So we're back, I can't lift anything heavy, and I have to take more pills than Jimmy Page's stunt double. But now I recover and wait for news from the lab. (They are above 90% on growing the T cells, but not 100%.)

And now, The Bridge District.

Balrog99

tbone1 wrote: »

Well, I'm back home. On the 20th I had laparoscopic surgery to extract cancer cells and harvest the T cells. They made four incisions in my abdomen, including one where the surgeon had to insert her hand to move the gall bladder. (Thankfully, the surgeon was a small asian woman, not a large nordic man descended from village blacksmiths.) And this was lucky; they had to prepare me for seven incision, one of which would have laid me open like a sturgeon in a caviar factory.

It was rough, but so far the recovery hasn't been too bad. My wife got us an AirBnB near Galveston Bay for a few days after I was checked out and before I was cleared to fly. My brother flew in for four days to help out my wife and to just spend time together. He went with us to the hospital for my follow up and wheeled me back to the phlebotomist. When she pulled out thirteen vials, he was shocked. I said "Have I mentioned that I sometimes look borderline anemic? And have dreams of being a strawberry milkshake?"

So we're back, I can't lift anything heavy, and I have to take more pills than Jimmy Page's stunt double. But now I recover and wait for news from the lab. (They are above 90% on growing the T cells, but not 100%.)

And now, The Bridge District.

Best of luck and tell Xzar 'hi' for me!

Aedan

You are a warrior. You are in my thoughts and I do hope the best for you, man.

jastey

Best oft luck to you.
A friend of mine died of cancer not too long ago. I wish you little pain and a lot of happiness for the time that is left for you.

tbone1

For the record, this sucks. I have a decent amount of body hair and, my abdomen having been shaved before surgery, the hair is starting to grow back under the glue used to seal the incisions. MAN does it itch but I don't dare do anything about it.

tbone1

Aedan wrote: »

You are a warrior. You are in my thoughts and I do hope the best for you, man.

Thanks, but really, what I'm going through is not that big a deal. Like I said, I saw people much worse off at MD Anderson, and if this is what it takes to give me more time, then so be it.

Mind you, I say this now that I am no longer getting my daily anti-clotting medicine, which my wife had to administer via a needle in my stomach.

OrlonKronsteen

Your sense of humour and ability to look at things in perspective are awe-inspiring.

dunbar

One has to try and keep a sense of humour in situations like this.
It looks my radiotherapy is going to be the 'continuous' kind where they inject radioactive spheres around the affected area - which in my case means that I'll have a radioactive arse. When I stopped giggling I asked if that meant that my 'stools' would be radioactive, kind of like nuclear waste. A very emphatic "No!" was the answer - but I will however have to carry a special explanatory card for airport security scanners etc.!

Ammar

dunbar wrote: »

One has to try and keep a sense of humour in situations like this.
It looks my radiotherapy is going to be the 'continuous' kind where they inject radioactive spheres around the affected area - which in my case means that I'll have a radioactive arse. When I stopped giggling I asked if that meant that my 'stools' would be radioactive, kind of like nuclear waste. A very emphatic "No!" was the answer - but I will however have to carry a special explanatory card for airport security scanners etc.!

Be really happy about the answer being "no". Otherwise, you would no longer be allowed to use any toilets, but would have to collect all your waste for proper disposal

I know someone who took part in a clinical study, and where that was the case. It took the people on the study drug at least a week to learn how to hit the special bottles for disposal.

tbone1

Ammar wrote: »

I know someone who took part in a clinical study, and where that was the case. It took the people on the study drug at least a week to learn how to hit the special bottles for disposal.

I guess that having to measure my urine output after surgery isn't so bad after all.

tbone1

Latest update: The cultures are growing, and I passed the pulmonary and cardiac tests, so I qualify for the second part of the clinical trial. There was a paperwork snafu (a long story that I am trying to forget) but it looks as though I will be back in Houston in December and January. Which is a lot better than August or hurricane season, lemme tellya.

BelleSorciere

Here's hoping this is effective!

dunbar

That's great news and bodes well for the future (fingers crossed)!