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Posted 6/21/2018 11:08 AM (GMT 0)
Just a quick simple question for guys who’ve done SRT....

What is generally the time frame from making the cal, where you say, I’m ready, let’s start SRT, to the time of your first treatment. I was told 7-10 days after simulation setup, and all thatbprep, but how much time does all that take? So from. ‘Hi doc, I’be made a decision to move forward with treatment, to omg today is my first of 39 treatments. Assuming you don’t do HT.
Posted 6/21/2018 11:11 AM (GMT 0)
Logo, I realize I can come off as a bit of a drama queen at times of crisis, it’s just my nerves getting the better of me. But it ain’t because I want to be a showman, and I can assure you, it ain’t entertaining, for me. (But your comments are always appreciated, and I take no offense)
Posted 6/21/2018 11:35 AM (GMT 0)
Prato—
You asked how long from decision date to tx start date. For me, it was 4 weeks. The RO could have started me earlier, but I needed time to arrange the logistics of treatment away from home. Also, I did ADT, so that needed some lead time. When I consulted with Dr Biagioli in Orlando, he was ready to fit me in for a simulation within two weeks. In Guam, I had my first fraction 6 days after the simulation. Normally the Guam team wants 10 days (two work weeks), but they fast-tracked it to fit my schedule.
Posted 6/21/2018 12:05 PM (GMT 0)
Prato, my timeframe includes ADT so it would definitely pan out differently for SRT only. But knowing you are at least considering adding ADT I thought it would be helpful for you to see my schedule.

2/18/18 first casodex pill
3/6 first one month shot lupron
4/6 three month shot lupron
4/12 radiation simulation
4/25 final radiation dry run
4/26 first of 38 radiation treatments
6/20 last of 38 radiation treatments
7/6 last three month Lupron shot
8/17 last casodex pill
10/6/18 Lupron begins to wear off and freedom!!

Hope this helps

Mike
Posted 6/21/2018 12:42 PM (GMT 0)
Thanks guys. So it looks like 2 weeks more or less from simulation to setup to first treatment. That’s what I was looking for. Just want to have an idea.
Posted 6/21/2018 1:57 PM (GMT 0)
Pratoman,
I did ART without ADT. If I remember correctly, we had target practice one day during the week and started the real thing on Monday of the following week. It's usually up to how full the facility's patient schedule is. To have a full bladder at the right time was always tricky for me.
Posted 6/21/2018 2:35 PM (GMT 0)
Yep....two weeks from Simulation, through planning, to first ZAP. I've heard of one week, but both rare and do you want them rushing the planning work?

I didn't think so. wink
Posted 6/21/2018 3:43 PM (GMT 0)
Prato:
about 1 1/2 weeks from simulation to the first tx.
about 1 week from when I decided to pull the trigger to simulation.
But I had consulted with the RO twice and was in the system, awaiting my call.

Mel
Posted 6/21/2018 4:09 PM (GMT 0)
Prato -
It's been a few years, but I remember a couple of weeks from my first visit with RO to simulation and then about another 2 weeks to start of treatment. Bear in mind that imaging during simulation might further influence treatment decision. Imaging during my simulation showed an enlarged lymph node. This led to discussion by RO with my wife and me and viewing of images. Because I was already T3b he said the lymph node could mean a lower prospect of success from SRT. I decided to go ahead because it still offered hope of a cure and I judged the added risk of treatment as low. I note that RO laid out the options and did not push me to go ahead with the SRT. He put me on Casodex for 90 days - starting the day of that meeting and continuing until a few weeks after treatments ended. He targeted a portion of each day's fraction at the suspect lymph node for the first 2/3 of treatments but not beyond to avoid damage to adjacent organs. It turned out that the SRT did not cure the PCa but it did send it into deep hiding for a few years, in which otherwise I'd have been on ADT, so I have no regrets. I wonder if maybe a longer ADT course with Lupron rather than Casodex at time of SRT might have had better results, but my best guess is that the horse was well out of the barn by then anyway.

Jim
Posted 6/21/2018 5:07 PM (GMT 0)
Thanks guys, sounds like the 2-3 week thing is pretty universal.

Behemond if i do ADT it would be Firmagon, its what they use at MSKCC
Posted 6/21/2018 5:28 PM (GMT 0)
they should call it "Firmbegone". and you think you're a Drama Queen now? lol tongue

ed
Posted 6/21/2018 5:57 PM (GMT 0)
One note on communicating with/through nurses at MSKCC: that’s my one and only disappointment with MSKCC. One forgot about my appointment for catheter removal until I showed up (fortunately she was there that day). Also found phone and email messages to and from doctors were not clear or nuanced — tone of voice didn’t cone through.

Think your plan is the right one for you, though you could ask for a call from Dr. Zelefsky himself. I’ve had calls directly from my RO there. Always better I think to hear straight from the source.
Posted 6/21/2018 8:21 PM (GMT 0)
@F8/Ed, .... ok, drama KING. Does that make you feel better.

@Progressing....so far i've had a couple of questions and the Rad Onc Nurse got back to me pretty quickly, via the portal. Answers were MOSTLY clear.
As i said, I'm going to relook at this in August, and probably make my move at that time.
Posted 6/24/2018 2:52 AM (GMT 0)

Hello Pratoman,

Just wanted to send you a line, letting you know that we are all here to support you, as you look ahead to a possible treatment decision.

A great thing about this website ... no matter what treatment might be in your pathway, you're going to have brothers right here who can share some first-hand experiences.

Let us know where the road leads you --- we're here to travel alongside you, Pratoman, no matter where the road leads you next.

Thankful for your loyal brotherhood, here on this website ~
CYCLONE ~ Iowa State Cyclone
Posted 6/24/2018 2:31 PM (GMT 0)
Thanks ICU. Your contributions to the forum are terrific and very informative. I think I have a plan in place that I feel good about, one more rise I begin treatment hopefully it’s a small rise again so no ADT.
Posted 6/25/2018 2:02 PM (GMT 0)
Prato... I had simulation on 12-13 started radiation on 12-18

Larry
Posted 6/25/2018 2:36 PM (GMT 0)
Prato, just so you know I haven't been following this thread and instead have been replying on that other forum. Besides, my RT experience differs significantly from your situation so have little to contribute.

But several guys here have mentioned a "simulation", and I'm not sure what that is. I had a "mapping CT scan" two weeks before starting ART, then on my first day of treatment I asked if there would be a simulation and the techs said no, applied the tattoos and off we went.

The only thing that disrupted the schedule was one day lost due to hurricane Irma, which was made up that weekend. Otherwise there were a few days when they told me my bladder was low (it was due to the diarrhea caused by the RT) and they wouldn't treat me the next day if I showed up that way. Fortunately I was never taken out of rotation and was always seen on time.

Other than the persistent bowel disruption and being forced to guzzle a quart of water everyday by noon, everything went okay.
Posted 6/25/2018 4:03 PM (GMT 0)
FWIW, simulation was 5/29, a month before RT. Although MSKCC usually does a “set up” the day before the first treatment, just to make sure everything aligns properly, in my case because of the July 4 holiday and travel distance they plan to do set up and first treatment together.
Posted 6/25/2018 4:44 PM (GMT 0)
Prato- I've followed you story about recurrence. Sorry you have to go through this, but you have done your homework. Good luck on the radiation therapy and your course of treatment.
Posted 6/25/2018 5:00 PM (GMT 0)
Whether it is primary or secondary treatment the time frame and set up are similar. When I went through they constructed a cradle of a type of foam that held my legs and hips in place so they could not move. So I went in one day and was examined and fitted for the cradle. A week later it was complete and I returned for the simulation and confirmed my schedule. The following week on Monday I had my first delivery of radiation. They also wanted me on ADT for one month before the radiation began. I think my Lupron shot was on October 6 and my radiation started the first week of November.
Posted 6/25/2018 6:58 PM (GMT 0)
Thanks guys.
@Rob, no worries i know you were not following this thread. You have helped me alot.

Progressing, yes i was made aware of the setup, the Radiation Nurse gave me a whole packet when she sat down with me to talk about the process. Needless to say i devoured it all.

Jack, thank you. The foam sounds like what MSKCC refers to as the "mold" that they make, to help you keep still. They told me it will fit my body perfectly and i should try not to lose or gain any substantial weight once the mold is made :-0.
As far as ADT is concerned, they told me 2 months before starting RT. But i think i am going to say thank you but no thank you to the ADT, unless there are signs that my PSA is starting to jump faster at the next test.

Tennisplayer, thanks. I'm not ready to get started yet, doing one more PSA in early August, maybe end July, i dont want to let it get away from me. Hoping against hope that it stabilizes, but not expecting that, and unless it does, i will give the green light to the RO to get me started, soon after that.

I appreciate you guys chiming in. I'm good. Its gonna be what its gonna be. I got a call last night that a friend of mine,who i haven't seen in years, died rather suddenly of a pulmonary embolism. (had some kind of weird pneumonia a year or two ago that put him in a coma and on a breathing tube, so i guess he was susceptable) 65 years old. Can't control what we cant control. just do our best to manage things.
Posted 6/25/2018 10:00 PM (GMT 0)
I'm so sorry to hear about your friend. We are taking off later this week for my 50th high school reunion.
It will probably be shocking to learn just how many of my classmates are no longer with us.
Posted 6/25/2018 11:15 PM (GMT 0)
I just started salvage radiation last week. It was exactly two weeks from the initial visit to the first treatment. The RO said they needed the time to calculate my treatment.

I didn't get a custom foam thing, just a generic foam thing. They position me based on the tiny tattoos they put on me back in that initial visit. I guess if I gain too much weight, the tattoos might move also. ;)

For those of you who have been through this--do you know if it's OK to keep your watch on? I asked, and they said yes, but they didn't seem too sure. It would save a minute or so if I didn't have to take off my watch, ring, etc.
Posted 6/26/2018 12:35 AM (GMT 0)
DJBear, yours sounds like mine... a CT scan used to "map" the geography of your pelvis and formulate the treatment plan, then two weeks later started treatment. No simulation day. And about the watch, you're probably okay with it on, but I would want it off myself. My pants and briefs stayed on but pulled down to my knees, shoes off and my socked feet into the foam mold.

But I would always remove my phone, keys and wallet from my pocket before lowering my pants. If nothing else, it kept my pants from falling down on their own when I hopped back off the table. And I wasn't sure about the metal keys and phone interfering with the treatment, or the radiation wiping out the data on my credit cards in my wallet.
Posted 6/26/2018 1:22 AM (GMT 0)

DJBearGuy said...
I just started salvage radiation last week. It was exactly two weeks from the initial visit to the first treatment. The RO said they needed the time to calculate my treatment.

I didn't get a custom foam thing, just a generic foam thing. They position me based on the tiny tattoos they put on me back in that initial visit. I guess if I gain too much weight, the tattoos might move also. ;)

For those of you who have been through this--do you know if it's OK to keep your watch on? I asked, and they said yes, but they didn't seem too sure. It would save a minute or so if I didn't have to take off my watch, ring, etc.


I left on my watch and rings. Also never emptied my pockets, though in hind sight that might have been a good idea. Nothing bad happened to anything I carried in there. It's not radiation that would hurt your credit cards, but rather the prodigious electrical environment creating and focusing the high energy electron beams that create the radiation.

My legs were fixed in position very simply. They bound my feet to the sides of a smallish foam block with a velcro strap, and that was good enough. For my hands, I had a rubber ring that I held on my chest with both hands to keep them still. Nothing but my personal organic bits was in the radiation field, so none of it mattered.
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