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Posted 2/27/2016 9:11 PM (GMT 0)
As the third member of the trio here undergoing CK this month, my journey has begun. I am going through St Louis Cyberknife with Dr. David Morris as my radiation oncologist. I live in St Louis.

Yesterday (Friday), I had the fiducials implanted. For that, I was on a low residue diet for the prior 2 days. On the night before the procedure, I drank 8 oz of Citrate Magnesium at 7pm which was a rather slow acting laxative. At 8pm, I began a clear liquid diet. After midnight, just minimal water allowed.

On the day of the procedure, I did 2 fleet enemas an hour before my 11:30 am arrival time.

Upon arrival at the procedure center, they drew blood for a quick lab check, put in the IV, and then gave me the propofol mask, which I don't even remember getting. I was a little surprised to have a general. He probably told me, but I forgot. Dr. Morris did the procedure and put in 4 fiducials. He prefers going through the perineum as opposed to the rectum.

I wasn't expecting a cath. If I remember correctly, Dr. Morris explained that it helps with the imaging he takes during the procedure to control the bladder and to know where to put the seeds. Or something like that.

Afterwards, I was given a 7 day Cipro script.

Today, I am wizzing razor blades. Then for the next hour, my willie is very sensitive/painful to the touch and if I raise my legs to put on clothes, etc, I get a very sharp pain. Not happy. After doing some googling, it sounds like trauma from the cath is the culprit, and it's a fairly uncommon side effect. Here's hoping it gets better real quick.

Next Friday, I have the CT simulation with the custom foam body mat made, and then an MRI. Hopefully no more caths!! For all that, I will again be on a low residue diet 2 days before with a fleet enema before the CT. Upon arrival, I empty my bladder, then drink 8 oz of water.
Posted 2/27/2016 10:02 PM (GMT 0)
'Wizzing razor blades', yikes! Sounds painful. I had no pain from my catheter after surgery, just uncomfortable to deal with. Like you said maybe just an uncommon side effect. Could going through the perineum be a possibility as to the cause? I know nothing as to the procedure other then what I read through you guys so I would not know. I have a friend who started the CK process recently, I'll have to touch base with him to see if he has/had any issues.

Thanks for the update, hope the pain goes away soon....Jim
Posted 2/28/2016 12:17 AM (GMT 0)
DCD55, I just had HDB over the past two weeks, and had a catheter during both implants. I had the razor blade peeing aftereffect of the catheter as well, this is fairly common. I didn't experience the sharp pains however. The razor blade side effect only lasted a day or so and it only occurred after the first catheter not the second, so here's to hoping it passes quickly for you. Hang in there brother!
Posted 2/28/2016 6:05 PM (GMT 0)
ouch. sounds painful. Hope things go well once the treatment starts.
Posted 2/28/2016 6:32 PM (GMT 0)
Best of luck with your CK treatment dcd55! Please let us know how it goes. I will be signing up for CK soon myself.
Posted 2/28/2016 8:31 PM (GMT 0)
Thanks, guys! Today the painful urination is much improved. The Cipro may be working. Hopefully tomorrow is better still.
Posted 3/4/2016 12:03 PM (GMT 0)
dcd55,yes its rainwest,you and me doing Cyberknife.Mine starts this morning.Just sitting here waiting for the suppositorie to kick in.No enema.I had no catheter for the fiducials.I did have a cathater for simulation during the CT/MRI.Same here hurt,burn,when urinating for the next day.I will not have any cradle or special postional procedures done.Why the different protocol,I dont know.Is one better than the other ? I dont know.I just hope it all works out in the end for all of us.Right after the procedure the Wife and I are headed out to St.Louis to visit my Daughter.Thats a 5 hr trip from Chicago.I hope I have no issues.Keep in touch as I will.
Posted 3/4/2016 3:02 PM (GMT 0)
Good luck today 0311. stay still and watch the robot arm do its thing. hope you have some good music.

As for protocols with a cradle and rectal balloon, my RO said they tried it before but people were uncomfortable and actually squirmed around more. They get better results when people are comfortable and relaxed. It wasn't difficult for me to lie still.
Posted 3/4/2016 3:07 PM (GMT 0)
I had the same pain after my first HDR procedure and told my rad-onc. He relayed the info to my uro and he then used a lubricant with a pain killer when inserting the catheter for the second procedure. Voila no pain.

Seems so simple, why isn't it always done? Probably because none of our doctors have had done to them what they do to us.
Posted 3/4/2016 7:19 PM (GMT 0)
JNF, I agree.....

0311, sure hope the radiation went where it was supposed to! We will have nice weather here this weekend with above average temps, so enjoy yourself!

I had an MRI (3T, short session-only 15 minutes long) and a CT this morning (no cath for either) which the team will now combine for purposes of mapping out my radiation treatment.

Incidentally, they no longer do the body contour mat thing. Wasn't effective.

I'm supposed to start my first CK on 3/23 if the radiation treatment has been mapped out by then.

I asked my RO about using Viagra or Cialis as an ED prevention thing during and after treatment, which Allen recommends. I found a couple of journal articles on the subject. One was an April 2014 JAMA article saying no benefit to Cialis in a blind study; the other was an August 2014 Journal of Urology study suggesting a benefit in a blind study, but my RO said a closer read showed no benefit. He's not inclined to prescribe one or the other.

Neither study involved the hypofractionated treatment we CK folks are receiving.

Allen, and others, any update on whether those class of drugs have any proven benefit, and 0311 and rainwest, have your ROs mentioned using them prophylactically?
Posted 3/7/2016 1:56 AM (GMT 0)
Hello fellow pin cushions.I had my first CyberKnife SBRT session.It took 1 hour and I was out the door.I was on the road for the next 5 hrs headed to St.Louis to visit with my Daughter and Son in law.I had no side effects since Friday 11 am and its now Sunday 8pm,just arrived home..I P real good.No blood,no getting up at night.Very pleased so far.Tomorrow am is session #2.One issue is that I have not had a bowel movement since the radiation,Friday.Tommorrow morn 2 hrs before arrival ,i take a supposoirity same as session #1.I hope it cleans me out.I will keep U updated.
Posted 3/7/2016 5:46 PM (GMT 0)
Hello,I just returned from my 2nd radiation treatment.All went well.No SEs to speak of.Done in 50 minuets.3 more to go and thats when my dick falls off.Im taking 50mg of Viagra daily.My Doc says its OK with her,as she read the same studies of Cialis vs Viagra.I had a copy in hand of Tall Allens print out.During Marine Corps boot camp our beloved Drill Sargeants always called us Broke Dicks.Hey I dont want a Broke Dick.So give me my little blue pill.We will see who has the last laugh.Geez.
Posted 3/7/2016 11:48 PM (GMT 0)
congrats @0311 you are well on your way....
Posted 3/25/2016 6:29 PM (GMT 0)
Just checking back in with an update.

Had Round 1 with CK this past Wed, 3/23, and all went smoothly. Protocol is to go on a low gas/low residue diet 2 days before treatment and maintain that throughout the treatment; to do an enema an hour or so before CK; to empty the bladder upon arrival for my appointment and to then drink 8 oz of water (this was also my CT/MRI protocol for mapping the radiation, and the RO wants to replicate that for accuracy purposes during CK treatment); and that's it.

The RO is using 7.25 Gy for 5 sessions, every other day, although he will do back to back days depending on the situation. He thinks every other day is best for me because I have Crohn's disease, which has fortunately been asymptomatic pretty much since my 1998 surgery. I am on maintenance meds for it since 1998, including a leukemia drug, which my RO suggested I stop based on some literature, although he says it isn't very strong. I decided to give it a try. A little scary, because asymptomatic Crohn's is rather rare. But there's some suggestion that those drugs aren't always needed and can cause cancer down the road....so maybe I don't need them?? Anyway, so far no adverse consequences after 4 days of cessation.

I was supposed to have CK Round 2 today but upon showing up at 8am, I was told the machine was discovered to need maintenance when they fired it up, and that this happens from time to time. So no treatment today.

So far, minimal side effects from Round 1. Maybe a little fatigue, hard to really tell though.
Posted 3/25/2016 9:25 PM (GMT 0)
I meant to add that the CK machine is nuking my prostate with 190 rays and that, as others note, there is nothing to the procedure itself. Like getting an x-ray, you don't feel a thing.

The hardest part for me was staying awake. Afterwards my blood pressure was its usual 93/60. No stress at all.

I have to say that the various pieces of equipment which comprise CK, including the robotic machine, the 2 monitors in the ceiling, and the sensors on the floor, constitute an amazing feat of engineering and design.
Posted 4/4/2016 6:54 PM (GMT 0)
Today, I graduated from my 5 session course in CK! And I may have graduated with honors in that, so far, knock on wood, I am having basically no side effects other than some fairly minor fatigue and a somewhat diminished stream (maybe by about 25%). No burning urination, no frequency and no urgency. No Flo-max needed. No bowel issues. But I haven't tried the willie yet....

My RO said symptoms can appear or worsen over the next 2 weeks or so. Thus, I'm not out of the woods yet.

He expects all symptoms will be gone within 4 weeks or so from now. Here's hoping.

He said he treated the entire prostate plus a 5 mm exterior circumferential margin except the anterior wall of the rectum which was a 3 mm margin.

I have a follow up appointment with the RO in a month, but if I'm doing well and don't have any Qs, I can cancel.

He wants to monitor my PSA every 6 months unless the numbers go up more than 2 points on any of those tests in which case the monitoring will be more frequent. But he isn't expecting that kind of bounce.

Overall, I was very pleased with the experience. The RO and staff were excellent. The machine went down a couple of days, prompting service calls and re-scheduled appointments, but other than that, easy peasy. I was on the table for each session for about 35 minutes.

Now it's time to get back to a regular diet and presumably regular BMs. Been constipated. I'm very pleased that the Crohn's is staying quiet. Again, knock on wood.
Posted 4/4/2016 9:32 PM (GMT 0)
dcd55,you are offically on R&R.Good for you.Its a good feeling isnt it ? Lots of work to get where we are at. I felt fine after except for bowel pressure and a little bleeding.All gone now.Im feeling good,eating well etc.Its been 3 weeks today that I completed 5.Keep us posted on SE.This is what new guys want to see. 0311
Posted 4/28/2016 2:50 AM (GMT 0)
hope you are still doing well after the treatment dcd55
Posted 4/28/2016 12:18 PM (GMT 0)
I'm doing great. The minor fatigue was gone within a week of ending treatment. There was no urinary urgency, frequency or burning. My stream may be a tad reduced still, but hard to know. No bowel issues per se other than the constipation which was diet related and resolved within a week as well. And no sexual changes either; potent before and potent now.

I'm hoping I'm out of the side effect woods.

I'll start getting the 6 month PSA tests and presumably those numbers will trend downward.

Thanks for asking, rainwest. Hope you are doing well, too.
Posted 4/28/2016 4:28 PM (GMT 0)
Glad the 3 CK Amigos are doing well.

It's been 18 months since my 5th SBRT fraction 10-20-14 and no adverse side effects.

I do not even recall any special diet for the procedure by Dr Chris King at UCLA.

I have some connection to your cities having grown up in STL before moving to east coast in 1971 and having a daughter who lives near Chicago.
Posted 6/21/2016 7:38 PM (GMT 0)
Quick update. I'm now 2.5 months out from my last CK treatment. The slightly diminished stream was back to normal within 3 weeks of the last treatment. Since then, there have been no adverse side effects (urinary, bowel or sexual). Yay!! Here's hoping that remains the case going forward. I am scheduled for a PSA test in November.
Posted 6/21/2016 8:05 PM (GMT 0)
I'm glad you're doing so well. Someone in my support group is hoping to find a therapy with the best odds of maintaining ejaculate volume - how is yours doing so far? (Mine is mostly gone cry )
Posted 6/21/2016 8:33 PM (GMT 0)
Allen, before CK my volume was already diminished due to a vasectomy. It might be a bit less now, hard to say.
Posted 11/17/2016 4:16 AM (GMT 0)
Thought I'd check back in after having my first post-CK PSA test on 11/7/16. It was 1.58 which is down from the pre-treatment numbers (2.3-3.7). So that's good! Plus, I'm having zero side effects, which is really, really good. My radiation oncologist said in his experience, if there are no issues at this point, there aren't likely to be any. Here's hoping.
Posted 11/17/2016 4:32 PM (GMT 0)
Hello All,Im one of the 3 amigos having Cyberknife-SBRT completed 5 on 3-14-16. Im 9 months out and no side effects.ED is baseline and am still producing sperm.I would like to know the medical reason why some men have sperm after RO and some dont ? Is it anything to do with seminal vessicles,sperm duct,etc, that wasnt radiated as much as other guys.Or very possibly the sperm will eventually radiate away all by it self or will be used up,wink,wink,with continued use.
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