UCLA SBRT - Going Home - It Ain't Happening

It has certainly been an interesting day here in LA.

First I had to fast before the C11 scan (no coffee) and it is now 2:30pm and I just had lunch.

I met with the folks at the radiation department this morning and they ushered me over to the C11 facility. I had to drink 3 servings of contrast, spaced at 15 min intervals, then they brought in the C11. Injected IV while I was on the scan table and the whole scan process took about 30-40 minutes. The C11 is a PET scan, but they also do a CT scan at the same time.

After that I met with Dr. Kupelian. We recognized each other right away and hand shakes were quickly replaced with an honest hug. We spoke for about 45 minutes.

He admits that there is a lot he does not know about reading the scans, but thinks that there may be more involvement that just the 2 nodes. He quickly added that he could be wrong and would wait for the experts to read the scans.

The two nodes in question are higher up in the abdomen and were not part of the area that was treated via SRT. So radiating them is not a problem. It is also possible that these nodes were already infected even before my surgery, which would account for my ever increasing PSA.

The "CRAP" part of the report is that if there is indeed other more wide spread areas, they were part of the original SRT area and radiating them is a little more dicey. The dosage would have to be given at a lower rate and probably over a 4-5 week period. He said if that were the case, I would just go on back home and have it done at MDA.

There is then also the concern of SEs in the bowel, intestine and other areas.

He will be waiting for the real readings to take place and call me in the next day or so.

We went ahead with the afternoon Simulation CT and they marked me and made a body form for the SBRT. So fingers crossed that the other things he saw were just clutter and C11 uptake that is not really cancer.

I have been playing the lottery and powerball for years and haven't hit anything yet, so I am not optomistic that I will dodge the bullet on this one.

I am not planning any long walks off of short piers in the next day, so I will make the most of being out here to see my son and meet Tall Allen.

Probably won't be much to report tomorrow, but I will check back in as soon as I know something. I will of course post about my meeting with Allen. I feel for our phone conversations that it will be informative and a lot of fun.

I guess I am kinda rambling here, probably a sign that my brain is going in a hundred directions at this point and all of them seem to lead to a car crash.

Sonny

Post Edited (Sonny3) : 12/3/2013 8:20:51 PM (GMT-7)

Dear Sonny - so sorry for the confusion and uncertainty you are having to deal with ( that is one thing that is so hard to deal with - give me facts any day)
- you are in our thoughts and prayers that the clutter is just clutter or sunny rainbows bouncing off you
.... every day is a bonus and every year we know you is a bonus too!

- I still plan on upgrading my SRT tattoo dots into "crosshair logos" now the treatment is over -

hopeful and happy hugs,
Bronson

Hey Sonny,

I'm glad to hear that you're finally getting to the bottom of this, but I'm sorry to hear what it may mean for you. I hope it turns out to be not as bad as your worst fears. If it's just those two nodes, this might be very manageable.

In any case, I think you'll feel better about this when you know exactly where you stand and you're on a treatment path. You've been coping with ambiguity for some time now and doing it very well, but it has to wear on you over time. It'll be good for you to know just what's going on.

You're in my thoughts and prayers, Sonny. Here's hoping for the best possible news. Hang in there, man. Every day is a bonus!

Jonathan

I received a call from Dr. Kuipelian about an hour ago and the news was not that good.

I am gald I came out here and very glad I had the C11 Acetate Scan.  This scan found the things that have been driving my PSA climb when all of the other scans didn't.  It would appear that there are 3-4 other very discernable nodes involved and they are mostly in or near the lower abdomen pelvic area that was radiated during my SRT.

Utilizing SBRT (high dose-shorter time frame) is not going to work for the area that would have to be covered.  There is too great a potential for long term side effects and toxicity.  He said that he had spent considerable time with the Radiologist reviewing the report and the scans.  In addition, he called upon two of UCLA's top ROs in whom he values their expertise and they are all in aggreement on this.

So I will be visiting with my son the next couple of days, getting together with Tall Allen and then flying home on Saturday.

Dr. Kupleian will be contacting my Onco and going over the report with him.  Additionally I will be picking up copies of the reports and disc of the scans to take home with me.

I have two choices according to Dr. K, I can do lower dose radiation to this wider area, over a longer period of time (to minimize the toxicity and SEs) or I can start HT.  He went on to say that if I choose to start HT, I could scan again at a later date and IF the nodes responded and the area to be radiated became smaller, I could then consider radiation and come off of HT for an unknown period of time.

It sure is a lot to think about. AND RIGHT NOW MY BRAIN IS FRIED!!

I have never absolutely ruled out HT, it was always in my future, just wanted to put it off as long as possible. 

Until the last couple of scans and then more so today, I have never had a target to address. To me, my rising PSA was always like finding evidence that you had a few bugs in the house, but you never saw them and couldn't find them. HT to me was like taking a shotgun and starting to blast away at the walls in the hope that you might hit a few.

Well I know for a fact that they are there, I know where they live and now I will continue to go after them.  That was the intent of this trip to begin with.  I had located a target and was out to get them.

Not much else to say about this trip at this point. Except to say that I belive that I have personally found the validity and usefulness in the C11 Acetate Scan.  It is well documented here on HW that I have had a litany of some of the better scans over the last three years and none of them found the information that this scan did in just a couple of hours.

"Every Day is Still A Bonus In My World" and today is no different. I am armed with facts now. I am empowered to chose how to address this and I have been blessed by being seen by some of the best in the Pca world since I began this trip.

Sonny

Sorry things didn't work out like you hoped but at least now you have a better idea what you are up against. I like the idea of starting HT and planning to scan again in, say, six months. If it worked it would be sort of like intermittent ADT only with tactical nuke carpet-bombing to make sure you aren't bothered while you are on vacation.

Say hey to the tall one for me. Enjoy your time with your son, and think of your return to the right coast as a tactical retreat to firm up your plans for the next assault on the beast.

Sonny, jess and I are praying that everything works best for you, looking forward to seeing you guys this spring.
Mike&Jess

Sonny, Best of luck as you move forward.
Mike

Sonny,
Sorry the news wasn't what you wanted to hear but it is amazing they found what they found so quickly. Now you can make your treatment plans with substantial new information you didn't have last week.

Now go enjoy the rest of your days out there. Consider your trip a successful fun.

Bill from Florida

Sonny, so very sorry.

Enjoy the rest of the trip with your son, that should take away some of the sting of the news.

In what you have been dealing with (and myself), the goal was to buy as much quality of time as possible, for as long as possible. And you did well with that approach.

But with a PSA of 80.x (and now mine at 83.x), that window was quickly closing.

The future plan sounds sensible, if you use HT, perhaps those areas will be reduced in size, and perhaps you could still zap them out of existence. I was worried for you, because of where they are located, you sure didn't want to end up with a colostomy or Urostomy, or both, because of any potential radiation damage. Good call on your doctor's part. And as you said, you still have the option possibly for future radiation. (which I don't have, of course).

When I see my doctor today, for the follow up from the MRI scans, I am going to insist that in Feb, when I am due for my next PET scans, that it will be the C11 Acetate like you just had. I would rather know than not know, and it sounds like that was far more accurate a scan method.

Best of luck, and have a safe trip home when you are ready.

David

Sonny,
Sorry things did not work out as planned. However, you gained some valuable insight into your situation. At least you know where it is at. Thank you for posting your experience. No matter your future choices I wish you the best.

Don

One September years ago I was watching the annual MDA Telethon when a medical researcher came on to talk about a significant genetic discovery that had just been made in the fight against one of the versions of muscular dystrophy.

I still remember how he described its significance. He said it was like a man who had been in a completely dark room boxing with another boxer who somehow could see him in the dark but he couldn't see this other boxer. The result was that his opponent who could see him in the dark was landing every blow he made, while he was swinging wildly in the dark, landing a blow on his opponent only occasionally.

He then said that the significance of the discovery was like someone turning on the light in that room. Now the boxer could see his opponent clearly, and from then on every punch he would now be throwing would be right on target.

Look at your situation that way, Sonny. Now you can see your enemy, who can no longer hide, and every blow you throw at it will be right to its jaw.

Sonny,

The C11 Acetate scan is only available in certain places in the US, correct?...Is UCLA the only place?

Thanks,
Jerry

Mel, I am sorry for the confusion, but I posted above that the Dr had called me with the full report and they had confirmed more nodes and larger area. SBRT is out of the question at this point.  Looks like we will be trading stories about the effects of HT, very soon.

David, you will have to do a little research on the C11 Acetate Scan.  As far as I know it is only being offered at selected sites around the country. Mayo has the C11 Choline, UCLA and Arizona have the Acetate.  There may be others but I am not aware of them. Maybe a few of the folks here, who put more time into the research for the rest of us, will chime in about other sites.  But I am pretty sure that your Dr and facility will not have the Acetate or Choline availability.

Folks, thank you all for the support and uplifting of my spirits.  Yeah this is a bummer, but I think I knew that this day was coming sooner rather than later.

When I count the blessings in my life (and they are many) HW is certainly one of them. 

My newly wedded wife Sherry is another.  Sherry has personal experience in dealing with Pca and had a 12 year experience in dealing with a husband on HT.  While this may be a new experience for me, I will have a caring guide through this. In fact we talked many hours about this prospect before our wedding. She knew this was a possibility and yet she went through with the ceremony anyway.

However, she wanted to make it known in part of the vows, that she WOULD NOT BE SHARING HER ESTROGEN PATCHES with me when I went on HT.  A bright side to HT for us is that it should end the Thermostat Wars that we have. She always wants the AC turned down to meat locker and never wants the heat turned on.  I soon may be in agreement to this.

For those of you planning to attend GFMPH Fl in March 2014, don't worry. I WILL have the pool heated for your comfort.  Of course until that time, I will probably leave it off.  I can just imagine that in the middle of the night, when I wake up in hot flash sweat, it will be nice to just open the bedroom door and dive in for a little while.  Life is good for sure. Hey, doesn't everyone put in a pool, just off the bedroom, when they plan to go on HT.

Today is yet another Bonus Day. The sun is shining, the air taste fresh and I am looking at the green grass from the "Blade Side".

Also, Tall Allen will be here to pick me up in a little while.  We are having breakfast together. Can't wait to meet him in person.

Yep, Bonus Day for sure,

Sonny