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Compiler's SRT Adventure

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Posted 3/14/2011 5:49 PM (GMT 0)
Some folks have asked that I keep you informed. So, I'll start now.

First of all, everything starts tomorrow with what I call the "set-up" and they call the "simulation."

My appointment is at 10:00 AM. I thought this would be a 3-hour thinghy, but I just called and they said an hour. So, adding the minimum 50% to their estimate, I am hopeful it won't last too long. I now figure 90 minutes. I know this includes a meeting with the radiation oncologist. He will once again explain all the risks and have me sign a ton of forms basically outlining all the dreaded SE and I'm sure promising not to sue their asses if they pull a Purgatory! (Hey, David, did you have to sign one of those things?).

OK, my understanding is that I meet with the doctor and then there is a patient education session. I'm not sure what that is; it could be a film or whatever.

Then I meet with the technology team and they do all th measurements. I am hoping I will not be catheterized. I am pretty sure they will do one in the rear to insert some contrast to enable their machines to mark the rectum... or something like that.

The machine is the Varian Trilogy RapidArc. Their marketing department says it's the best ever (what a surprise). I hope they are right in terms of efficacy and fewest SE.

One worry of mine will be the schedule. My teaching schedule is different every day. I hope they have a time slot that is amenable to my schedule. My plan it to work through all of this.

Mel

Posted 3/14/2011 6:30 PM (GMT 0)
Mel,
You will do well. My initial setup took an hour and included making the leg cradle and getting my tatoos. I had already received my welcome from the rad-onc. For the setup, I did not have a catheter or anything inserted anywhere. They used the CT scanner and compared it to a scan I had about 3 weeks earlier as they made the adjustments. Based on the scan and the biopsy, the rad-onc and physicist made a 3D map of the area and worked out the best plan with my urologist. Very much a team effort.

The next week I had a dry run with the radiation therapists. That is where the real education came in as I was on the actual machine and went through a complete cycle, but without radiation. They were constantly stopping to check positioning and make adjustments. At the end they added a larger + mark over the tatts and covered this with a clear waterproof round piece of tape to protect the marks. about once every 10 days they replaced the tape and marks. The dry run took about 30 minutes, I got my schedule and started radiation the following Monday.

My center was very good at providing a time. I requested either first thing in the morning or last of the day. The center was on my way to work and was convenient, but not for a mid day appointment. They gave me the last of the day which was 5:45 and it worked great.

The IMRT was easy. My routine was to leave my office at about 5:00, stopping in the restroom on the way out. I then drank a 16oz water in the 20 minutes or so it took to drive to the center. Once at the center I would have a 2-10 minute wait until they called for me. I would then remove pants, underpants and shoes; don a standard gown, and sit outside the treatment room while they changed the setup from the previous patient. Then onto the table, into the cradle went my legs, they did the fine adjustments, left the room, and everything started. In about 10 minutes I was off the table, got dressed, emptied my bladder, and drove home. Very easy.

I did have a few of times when things were delayed. A couple of people ahead of me was a guy that was being treated for throat cancer and a few times he got sick and it pushed everyone back by about one-half an hour.

My rad-onc wanted a full bladder and empty bowel. Be sure you know exactly what they want and then follow that. Once a week I met with my rad-onc and he gave me a good exam. They also weighed me and took my vitals each week and I filled out an assessment of urinary, bowel, and sexual condition.

Best wishes and here's to killing all those mutants!
Posted 3/14/2011 6:37 PM (GMT 0)
Mel,
thanks for keeping us up to date. Please eat some lunch on your lunch hour also.
Best of luck with the treatments.
Mike
Posted 3/14/2011 6:57 PM (GMT 0)
You will probably be nervous the first couple sessions, i.e. the unknowness fear factor creeps in on your mind...after a few times you will be laughing...like a day a the beach. Well I hope so, it kind of went that way for me, little fatigue hitting closer to the end...you can get through that. Best to you.

You may have a certain GLOW about you thereafter......LOL!

(you could have done this in the summer when school is out?)
Posted 3/14/2011 7:00 PM (GMT 0)
Mel, hoping for only the very best results from this member.. and i'm sure all members.

I think JNF's experience was while he still had a prostate?

And in your case you are talking SRT? If so, or at least the SRT I finsihed last month, there wasn't a ton of measuring. no cathter, no contrast fluids, nothing.

I went and had xrays (by the same machine that ends up doing the radiation for the REAL start - the next day) along with 3 tattoos, to line everything up. And that was it.

Because it's SRT, there is no prostate to line up. So looking at available MRIs, Xrays and perhaps pathology (size of now vacant prostate space), I think they get a pretty good idea where the "prostate bed' is located.

The 1st 35+- weeks was basically the same exact ray and dose into the general prostate bed, the last 3-4 were a touch strong and shot to the middle of the bed.

This was my experience.. Forgive me if i'm wrong about your case.

But it makes sense...the prostate is gone.. so it's a "range" you want to hit.. while makie sure you dont mess up the rectal area, etc.

All the best to you.
Posted 3/14/2011 7:57 PM (GMT 0)
>>You will probably be nervous the first couple sessions, i.e. the unknowness fear factor creeps in on your mind...after a few times you will be laughing...like a day a the beach. <<

the last week was the toughest for me.  my mind starting playing tricks on me.  i felt like screaming a few times, but i didn't.

ed

Posted 3/14/2011 8:04 PM (GMT 0)
Mel, mine was pretty much like Bob's. The set-up took about 20-30 minutes. Some xrays, some adjusting and 3 tattoos. The treatments were a non-event. After I got through the first week I could lay on the table and use the laser x hairs to self adjust and line up. They liked me coming in. It was a challenge with me to see if I could line up so well that they didn't have to move me at all on the table.

Unlike many of the others, I was not instructed to fill the bladder, drink, pee or whatever. I asked my RO about this in the first week and he said that with the equipment they were using it was not necessary. Sounded good to me and I never had to worry about having to get and run to the john.

I timed each treatment just to have something to do and they were all 15-17 minutes from the time I laid down on the table. The only time there was any change was the first of each week when they did some additional scans before the treatment. And that only took an extra few minutes.

Try not to get yourself too worked up. I really hope that you find this one a walk in the park with no complications.
Posted 3/14/2011 8:37 PM (GMT 0)
Mel,

Glad you will keep on ongoing diary, this will be good for the new guys to see, and you are doing this on newer equiptment then some of experienced.

My set-up drug on about 3 hours, I threw a fit when they wanted to stick a cath up my weiner, so in the end, they had to get the rad. oncologist herself to do it. It was only in me about 5 minutes, but after all my cath expisodes it got me unglued, even made them get some lydicaine before the insertion.

They never did a test run with me. The Friday before treatments began, I had the operation to have the suprapubic catheter installed, and then the next Monday, the first treatment began.

I hope you do very very well, and have only minimal, if any side effects. Seems like the bulk of guys here have few issues, and guys like me, are the rare exception, of which I am glad.

Looking forward to seeing you get through this as easily as possible, and pray that for you, it will be effective and you will be on the good side of the percentages.

David in SC
Posted 3/14/2011 11:02 PM (GMT 0)
Thanks for the info, Good luck with geting the schedule for work and treatments worked out.

Hero

Posted 3/15/2011 4:40 PM (GMT 0)
Mel,

You are fortunate to have found the rapidarc  as compared to the standard trilogy.

Best of wishes for a successful outcome.  It goes by fast once you get into a rythm.

Mr. Bill

Posted 3/15/2011 5:27 PM (GMT 0)
UPDATE-- DAY 0

Okay, had the set-up/simulation today. My appointment was at 10:00 AM. The first part was meeting with the doctor and his assistant for "patient education." They went over all the possibilities (including the bad stuff that are long shots). In my situation, the main real concerns are hemmie and bowel problems. I have hemmies (I can't spell the whole word) that are very significant and pronounced but RARELY give me any problems. They indicated there is a high probability that I will have some significant irritation. They suggested that I buy some Prep. H pads and use them instead of TP from the beginning of the SRT. Since I don't always listen, I suspect I will do TP and switch to the pads at the first sign of irritation. I'm not sure, but they pick that as my #1 SE, probably. Another will probably be bladder irritation. I'll have more urgency and frequency but probably not incontinence per se. The other main SE is fatigue but they said most of their PC folks pretty much carry on -- ie: it should not cause me any major problems. Also, I will have weekly appointments with the doctor to see how things are going and of course more frequent appointments if I have problems.

I forgot to ask again about the totality of my SRT. Last I remember, it was going to be 38 sessions and 68.4 total Gy. I will ask again next time I'm there. Also, they did mention they are radiating the prostate bed and not the entire pelvic/node area. I also asked about PSA tests. They said the first one post-SRT will be about 12 weeks after.

One very disturbing item: It will take them a week to come up with a plan and they like to have folks start before Wednesday or at the latest Wednesday during a week. They don't like to just start with 2 days and then have a weekend break. This means that it is possible I will not start next week, but the week after. It depends when the plan is developed. Also, they will not know what slots are open until the plan is done and they are ready for me. So, I still don't know if we can avoid conflicts with my work schedule. I showed them my schedule; it differs every day. They do want me the same time every day. Brief vent: Sometimes the best plans go awry. I saw the doctor a couple of times well in advance of my BCR just so I could quickly start SRT if needed. I had a back injury which delayed my PSA (anticipating doing SRT right away) by 2 weeks. Then the doctor went on vacation (another week's delay) and now these logistical things! Of course, it's always a relief to delay unpleasantness, but this isn't good! End of vent.

Oh, continuing with my saga. The next part of my day was the actual simulation. They put me on a table with a bean bag like contraption. Air is let out of the bean bag, basically forming a rough mold around me. Then they put a catheter up my butt and injected a very small amount of contrast material. They then took some cat scans. They also put some markers on me. They then looked at the results (10 minutes -- doctor and technician). Finally, the moved the markers a millimeter or so and put 3 tattoos on me (each hip and pubic area). These will be used for alignment.

In terms of dress, I had to strip from the waste down and put on a hospital gown.

They said the first tx. will consist of a trial run, followed by the real thing. That might take 25-40 minutes. After that, probably 12 minutes maximum. Today's events took 90 minutes. The technician was very nice, carefully explaining everything he was going to do just before doing it so there were no surprises.

My next real update will probably be day 1, which will probably be in 2 weeks.

In the interim, I would welcome any and all comments, especially from those who have been throught this!

Mel

Posted 3/15/2011 6:25 PM (GMT 0)

Dang -- I try to be complete but I left one thing out. I expressed my concern that I do have problems with constipation at times. In short, my bowel might not be as empty as they like. They said it was no big deal. I asked about drinking water and they said to do it.

I had brought a bottle with me (16.9 oz) and they said down it all and we will see at the simulation. After the simulation they said that was the right amount.

I asked/mentioned that I could drink more but they said this amount was fine. I'm still wondering if even more is better. Any thoughts?

Mel

Posted 3/15/2011 7:14 PM (GMT 0)
I too have 'roids and worried about constipation. My doc had me take 6 psyillium(sp?) fiber tablets each morning (Walmart sells them under the Equate brand Fiber Therapy - about $4.00 for 160 capsules); plus milk of magnesia daily (I gagged on the first spoonfull and tossed it - took the tablets instead) and Gas-X before each meal. I had no constipation or diarrea problems during the whole treatment. I continue to take the fiber (my doc says most people do continue) because it has really helped ease the 'roid problem and since radiation I have at least two bowel movements a day vice one. constipation would really hurt. I work about a 15-minute drive from my hospital so I drank a bottle of water enroute each day and it seemed to work fine. Although, a couple of times I barely made it to the bathroom in time to pee after the treatment. All in all, I found the SRT to be no big deal at all. I am having some side affects, but my PSA has been down for the last two readings so hopefully it was worth it. Hope you will have a positive outcome also. Squid.

added a helpful correct spelling for the fiber tablets. These things are wonder drugs by themselves. They really do the job for constipation prone people.

Post Edited By Moderator (James C.) : 3/15/2011 3:43:11 PM (GMT-6)

Posted 3/15/2011 7:15 PM (GMT 0)
It would be nice if you could at least get the equation down to the 12 minute appointment part of this.. and not worry about the WHEN and how it messes up your work.

I personally found that ANY SE from the radiation was towards the end.. being tired later in the day. I found that my stools were looser, so instead of being constipated, perhaps you might get a break there.

I did find that I have had more urgency in the bladder than before srt.. have to get up at night - though I do like a few beers, so I am pressing it perhaps.

They mentioned to me about a week in that I should rink something, saying that might drop the bladder out of the way of the rays.. but didn't make a BIG deal out of it either way. I took that as to have empty, then full, then part full, figuring if I could distribute the rays evenly, instead of at the same point in the bladder. Who knows.

Almost 3 weeks out, I feel ok. I do get up once a night, but I could actually plan that better if I tried. I am not tired anymore. The loose stools sometimes make it a little sore back there, but nothing major.

Here's hoping #1, it WORKS for you, and #2, that you find the SEs with srt end up being more about soemthing to worry about, then the reality.
Posted 3/15/2011 9:26 PM (GMT 0)
Hey Squid:

Did the SRT irritate your hemmies?

I now eat All Bran Cereal for Breakfast and that seems to help with the constipation.

I really am RARELY thirsty. I need to drink more water, actually.

Mel

Posted 3/15/2011 9:40 PM (GMT 0)
It didn't effect my 'roids at all.  Prior to starting the fiber therapy I had off and on constipation problems that cause hemmi problems, but none since the SRT and addition of fiber.  Squid.

Posted 3/15/2011 11:26 PM (GMT 0)
Sounds like a decent setup session, you got 4 less tattoos than I did. Sounds like you are good to go.

David in SC
Posted 3/15/2011 11:47 PM (GMT 0)
David:

I got 4 less than you.

Darn it!!! That just won't do.

I'm going back tomorrow, DEMANDING that they re-do everything and give me 4 more tattoos (actually, they can skip the radiation and catheter!).

Mel

Posted 3/15/2011 11:53 PM (GMT 0)
I also didnt have a catheter up the bum either, sounds unpleasant.
Posted 3/16/2011 2:54 AM (GMT 0)
Mel,

I had severe inflammation of my 'rhoids, and still do 9 months later. Use the wet-wipes early, no point in making it worse, as once you start bleeding, it becomes very difficult to stop. Better to prevent than to try to fix. Isn't there a saying about that?

Doing the session at the same time every day helps guarantee a similar physical profile (bowels, BP, lots of things that change during the day), and also helps you settle into the routine.

Hope all goes well.

Posted 3/16/2011 3:00 AM (GMT 0)
To hear you guys talk about Roids, I am glad that is one ailment I have never experienced, hope to stay away from those.
Posted 3/22/2011 1:57 AM (GMT 0)
Well, time to bring back this thread.

My wife got a call this afternoon. I guess I start tomorrow at 4:30. I'm not sure if it will just be a trial run. I believe it will be the first tx., possibly preceded by the trial run.

When I found out, even though I absolutely wanted to get started ASAP, it still felt like another kick in the gut.

I SO DO NOT WANT TO BE DOING THIS.

I am too old to cry and too old to whine...but here I am.

Words of encouragement are always nice!!!

(Did I say this disease really sucks!!)

Mel

Posted 3/22/2011 2:01 AM (GMT 0)
You got to start somewhere and sometime. Tommorow is as good a time as any. I knew I would hate it, and I did, but I still
made it through the whole ordeal by myself. My wife only went with me on my 39th and final treatment.

You have to tell you self it might just work, and give you the cure you are still hoping for.

david
Posted 3/22/2011 2:39 AM (GMT 0)
Mel,

You start at the beginning and go on till the end. If you read my whole thread, you'll see that there were wet days before I got the water planned out right, and days that the drive in the construction zone bothered me more than the treatment, and days I hurt. By the end I actually realized I was going to miss the daily routine with my RT crew. I even drove up to drop off the check for my last co-pay so I could say hi.

And David was out there every day to kick my arse when I was too tired to care.

By the way, after the second week or so, try to do something for your crew - take a box of candy, donuts, a flower for the check-in desk on Fridays or Mondays, or if everyone else picks those days, pick another.

So now, you have two boots waiting, if you were considering faltering. That would be my way of encouraging you smhair

Posted 3/22/2011 2:41 AM (GMT 0)

Mel, I'm sure you will do fine with the SRT.  I had 38 sessions and experienced few side effects but I did the following because I also had a couple of "roids."  (1) drink plenty of water (2) take a mild vegetable laxative such as Senna Lax (3) use stool softeners (4) use  Metamucil and (5) do NOT force yourself to defecate  (in my case about the 4th. week I had the increased feeling or need to "go." I mentioned to you before that a positive margin can (from what I read) increase chances for durable response to SRT.  More  good news - you will probably get a certificate at completion of SRT.  Mine cost $38,000.00!!    The Old Sailor

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