Hi, N74g,

I'm glad to hear that you get it; it makes life infinitely better when one learns to do that. So does being in shape when you have to go through an experience like this, and more importantly, keeping in shape while undergoing treatment(s).

I'm currently in the midst of my 4th go-round, my third recurrence. I'm actually incurable, but manageable. At least, that's been the pattern to this point, but things are changing. Well, that's life. Literally. The only constant in life is change.

A bit over 12 weeks ago we started this round. The PET scan I got on Tuesday, the first, revealed that the chemo drug that was successful on the third round is no longer working. I still have the tumors that were detected then and there has been no shrinkage this time. In addition, a bunch of new tumors were present.

Now, this may be counter-intuitive, but that's good news. All three recurrences have been in the liver, and not the lungs which is the more usual case. What is especially nice about this is that A) the liver is easy to access for out-patient procedures, and B) it's the most durable and forgiving organ in the body, and allows for procedures that would be too toxic for the lungs.

I have an appointment with a clinic in Pensacola on next Wednesday for an initial consultation, following which I'll be scheduled for a procedure that implants radioactive beads in each of the tumors and no chemo will be involved.

That, my friends, is major good news to my ears; I've been taking one form or another of chemo almost continuously since mid-'11, with only two 90-day intermissions (chemo knocks the tumors down, and when they are gone, there's a 90 day break followed by a PET. In my case, that has meant starting the chemo again because new tumors have always been present at the follow-up PET.

So, I'm pumped! I've been faithfully working out all through these last two years, and it's a bitch when you've got a system full of chemo. The fatigue is the only thing that I've noticed, but as I said, it's a bitch working out when you are already wiped out. Not having to deal with that will be a huge improvement.

And here's how "not attaching to outcomes" fits in here. I had a visit from a guy I shared the same home room with in the 9th grade, in San Antonio (where he and his wife live today). He left Monday, but he asked me what I expected to hear from my Oncologist. I told him the truth, which was that there were three possible outcomes; 1) The Xeloda was working, and I might be done for a while, or I might need several more cycles to finish knocking the tumors down; 2)the tumors were already gone, and I'd be free for the next 90 days; or 3) new tumors would indicate that the Xeloda was not working and we'd have to look at something else.

As you know if you've gotten this far, #3 was the winner. Since I had no expectations, there was nothing to disappoint or surprise me unpleasantly and I remain a happy camper!

And BTW, they are reporting a very high rate of success with this bead business, and it may be repeatable when the tumors reappear down the road.

"May." No expectations, no disappointments.

Bart

Bart:

I suspect there's another phrase that applies to you...

...comfortable in his own skin.

I heard that for the first time maybe 10 years ago and it was as profound as your "don't attach to outcomes". It's amazing how many people are not "comfortable" and don't even understand what it means.

And then, out of the blue, having lunch with a new friend, and they say it. It gave me pause, for just a second, happy to know someone else who gets it.

You take care Bart.

P.S. My sister was stationed at Pensacola when in the Navy. She said standing at her kitchen sink she could watch the Blue Angels practice.

n74tg,

You are very kind, and I appreciate it. Thanks.

That's a fair assessment, I am indeed, comfortable "in my own skin," and you sir, are a very observant man. I like that.

I've got a house that I'm currently selling over in West Pensacola, on the "dirt side" of the road that runs along the north shore of the first branch of Bayou Chico, and like your sister, we (everyone along the street) were always able to watch the practices of the Blue Angels. Pensacola NAS (Naval Air Station) is only about 2 miles from the house, as the crow flies.

It's a great little town, population of the city is ~50K, big enough to have a few amenities, small enough to have no serious traffic congestion and human scale architecture with a wealth of very interesting history behind it, back to the mid-1500's and the Spanish. I've been around, and this is a great place to live!

OTOH, my wife says that I would be perfectly happy living under a bridge, and she's right.

Hi Folks,

Here's an update with my situation. As my signature shows, late in June this year I had a PET scan that revealed that my third recurrence had arrived, right on time.

This go-round, we decided that since the Xeloda (pill-form Chemo,) which had worked so well on the last batch of tumors, we'd use it for this batch also.

Oooops...

I just had my mid-course PET scan on Monday and on Tuesday, my MO informed me that said Xeloda, which had eliminated the tumors in the second recurrence, was not working this time. All the tumors are still in the liver, all have grown some, and there are newcomers to the party.

So, we decided to go another route.

Wednesday, I had an initial consultation with a new kind of radiologist who is going to enter the femoral artery through my groin and implant a bunch of radioactive beads directly into the liver. Well, actually into one lobe of the liver, 6 days later, he'll repeat the process and hit the other lobe.

Yesterday, I had a CAT scan with Iodine marker. I always enjoy those, seriously! They give you a very warm feeling, somewhat like the spreading glow you get when you drink a hot toddy on a very cold day! The purpose of this was to map the distribution of blood vessels in the area; which I am under the impression will be used to guide the gizmo that implants the beads.

Pretty cool stuff, even better if I can persuade them to shrink a submarine down and hit those tumors with miniature torpedos.

Oh wait, scratch that, I just realized that I'm just geezin'... again.

All kidding aside, since this procedure is repeatable, I'm quite pleased. I'll be positively tickled if it works as well as advertised (they tell me this has a very high success rate with very few reported side-effects, and I can definitely dig that!) Since I know that we'll be doing this dance until more tumors show up than can be managed this way, having an effective management tool that can be re-used is comforting.

So is a good stiff drink, and now that that subject has been broached, and I hav nothing further to report, I believe that I shall test that thesis without further ado.

Prosit!

Hello Bart:

Sorry it took so long to respond to yesterday's good news. I read your post late afternoon, but was running late to Friday night swing dance club get together. You would probably enjoy the oldies, all good swing dance tunes and a happy group of people who love to dance. We had 106 people last night, down from the usual 160 (our biggest crowd ever 250). I think there is an early Arkansas Razorback football game today they have to get up early and drive to (sorry, ended sentence with participle, bad grammar).

Enough about them, this thread is about you. I like that radiation beads treatment idea, reminds me of what they use in prostrate cancer treatment. That they can put rad source right next to tumor seems to really be the way to go, max dosage to tumor, minimum to everything else. While I like the idea for oral cancer, it seems having to maybe go in through a carotid might have more risks than reward. I suppose I have the same worry about going in through the femoral. Oh well, sometimes risk has to be taken.

"salud, dinero, amour y tiempo para gustarlo" (to health, wealth and love and the time to enjoy them).

Have a great weekend Bart.
Tony

Good luck!!!

Hi Bart, I feel for you and all that you have lived. I'd be curious to know what kind of character you have. You are positively amazing!
Thank you for sharing, Sophie

Bart, I loved reading your posts. I'm actually printing out your intro to show it to my Dad. He's getting frustrated that the cancer is eating away at his palate & is very depressed, doesn't want to do anything! I just want to show him how he can still be active, be positive and never give up hope! I told him I would fight with him until the last minute and he needs to fight right along with me. Thank you for your sharing your story, it definitely is an inspiration! Good luck & let us know how the beads worked!

HI Connie, and thanks for the kind words. Don't be surprised with you get a bill from my haberdasher though, I'm having to replace my hat because you made it swell too much!

Suggest to your dad that no matter what life takes from us as payment for hang around this planet, it always leaves us something we can use and adapt to make up for the loss (or enough of it, anyway).

When I got shot, I lost the use of my right leg below the knee due to a bullet through the right sciatic nerve.

At first, because I was young and inexperienced with dealing with adversity, I was devastated! As a person who loves driving for its own sake, loss of the use of my right ankle seemed like a crushing blow because not only is the right foot used to work the throttle (gas pedal), it's also used to operate the brake!

Having no control over my right foot (and very little sensation from it as feed-back as to where the foot was), I was well and truly bummed out! I'd spent a great deal of time learning to perform and master the "Heel and toe" technique used to simultaneously apply and modulate the brakes, while doing the same with the throttle. This allowed "Double-clutch" downshifting while applying the brakes going into a tight corner at speed.

Hell, I thought it meant that my days of even operating a manual transmission were over, and I'd be forever doomed to driving "Slush-boxes," vehicles with automatic transmissions. No fun in that, eh?

Well, the truth is that I still haven't learned to "heel and toe" again, but I did quickly learn that I could plant my right heel against the floor as a pivot point, and with my foot on the accelerator peed,l push forward with my thigh to add throttle, and pull in back the same way to back off the throttle.

I do have to lift my entire leg and simultaneously move it (from the hip) and lower it to the brake and press down with the thigh. Woot!

However, I was also an avid motorcyclist and had cut my teeth on european hardware where the brake is operated with the left foot and the shift lever with the right. Years of riding had ingrained this pattern into my brain.

When I returned from Vietnam (several years after being shot there) I purchased a used Honda CB750, the first of the Japanese multi's. Guess what? Japanese motorcycles have the shift and brake on the opposite sides!

If you don't think that re-learning to ride with one leg that hardly works, is sufficiently challenging, just imagine trying to do this in San Francisco, where every stop is on a hill.

It was a fun adventure for two weeks, before I decided that I could manage the open road, and left to spend the next 6 months doing just that, living off the back of my scooter!

Never fret about what is gone, that's history. Focus on what's left, and adapt. Before long, your adaptation will become second nature and you won't give it a thought, unless you need to encourage someone else!

Good luck to you both!

Bart

Hi all, rather than start a new thread, I'm posting my latest sitrep here.

First, the SIRIspheres seem to have done the job; when I had my PET followup however, we found that a lone lymph node (I wonder if that would make a good title for a TV show... but I digress) which had shown "hot" at the time we discovered that the Xeloda was no longer working, had grown from .2cm to nearly 4 cm, and decided to eliminate that with focused beam radiation.

This node is about mid-way between the lower left of the liver and the stomach. The nausea is not as bad as the first go-round as there's no Cisplatin involved, but being in the middle of all the digestive appratus, it'll do until the real thing comes along (no, that's not a request for the "real thing".)

In a couple of hours, I'll drive in to Pensacola for my 10th (of 14) zapping.

Warm regards to all,

Bart