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Posted 2/27/2008 9:49 PM (GMT 0)
Hello:

Since my post-op surgery psa results have been 0.1 for three consecutive readings, I have decided to

undergo I guess what they call salvage radiation.  The date of my radiologist appointment is March 12.  I hope to begin soon after.

I am wondering what others have experienced who have gone through the same procedure?  Side effects (temporal / long term and other stuff)?  I am also curious if there is any way that I should be preparing for this procedure?

Posted 2/27/2008 11:40 PM (GMT 0)
My father will be a week or so ahead of you. He had his first appointment, which include a ct scan and then his second appointment he was "tatooed" for the radiation. That was an emotional day, but hopefully a step closer to getting rid of the cancer. He begins radiation on Monday. I think the first appointment is an hour and then it is supposed to go down from there. I will keep you posted as he progresses. There are a few great links from people that have undergone radiation already. Good luck and God Bless!

Chayna
Posted 2/28/2008 12:51 AM (GMT 0)

I presume that you are doing IMRT.  It's likely that you will tolerate it well.  A little fatigue toward the end that you will recover from in a few weeks.  A couple of us here have done the IMRT and posted about it.  I'd tell you how to find my story, but I don't know how.

It's very important to drink a bottle of water about an hour before your treatments.  It get the bladder out of the radiation field.  Practice holding it!  You'll need to.

Regards,

Bill

Posted 2/28/2008 7:59 AM (GMT 0)
Hi Rob...
You'll get through it just fine. RT was not a problem for me at all. I could lose the HT but it isn't overbearing. I tried to log into your blog but it was blocking me. Great blog though. And keep it up. It certainly was a nice way for me to share my story with family and friends alike. I will continue to subscribe to your entries. And I don't fear the big C word~Catholic that is, for I am. And we are brothers in Faith. God Bless you...You will have my prayers, always.

PS: I didn't find the Rob W. video on yourtube...any help?

Tony

Posted 2/28/2008 1:54 PM (GMT 0)
Rob,

I finished my 37 treatments of radiation (IMRT) last June and have had minimal side effects. I stopped wearing pads a few weeks before radiation treatments (5 1/2 months after RP) but now I have to wear 5 or 6 a week, mostly stress incontinence with very little leakage. I thought I was going to have problems with diarrhea and fatigue after 4 or 5 weeks but was told that at my age I wouldn't have any fatigue issues and fortunately I had no diarrhea.

The treatments are like getting a dental x-ray but longer. I'm sure everyone is different but my treatment consisted of being lined up on the table (using 3 period sized tatoos for guides - 1 on each hip and 1 at the base of the penis) and then having 2 or 3 x-rays to be sure I'm properly positioned. I was then "zapped" for about 30 seconds each from 7 different angles (360 degrees at every 45 degree angle except 180 degrees). You should have a full blatter during the procedure so I drank 24 oz. of water 1 to 1:15 hours before my treatment time. I only live 20 minutes away so I called before I left the house (self employed, home based business) to make sure they're weren't backed up. If they were I just partially emptied my bladder and drank more water. They did a blood test once a week to check my blood cell count and I saw my radiologist once a week also.

They'll give you a consent form to sign with all kinds of nasty side effects listed but the worst of them are rare. You'll get to know your radiation technicians very well. I can't say enough good things about the group that took care of me, they were fantastic. Good luck and keep us posted.
Posted 2/28/2008 4:56 PM (GMT 0)
Hi y'all.

Thanks for the tip on drinking before radiation. That is exactly the stuff I was looking for.

Tony: I just noticed that comments on my blog were restriced to google accounts. Since that is an options setting, I changed it so anybody can do comments.

Putting my piano playing on youtube is a dream of mine. Since my son has a video recorder, I think this is doable for me. We will see (I'll let y'all know if I figure it out).

And we are brothers in the faith..as are all of us who believe on the Lord Jesus Christ.
Posted 2/28/2008 5:06 PM (GMT 0)
Hi y'all.

Thanks for the tip on drinking before radiation. That is exactly the stuff I was looking for.

Tony: I just noticed that comments on my blog were restriced to google accounts. Since that is an options setting, I changed it so anybody can do comments.

Putting my piano playing on youtube is a dream of mine. Since my son has a video recorder, I think this is doable for me. We will see (I'll let y'all know if I figure it out).

And we are brothers in the faith..as are all of us who believe on the Lord Jesus Christ.
Posted 3/3/2008 3:28 PM (GMT 0)
Just to add....

I finished IMRT a year agao (almost to the day!)....  I found walking a lot in the evening helped ward of the fatigue I starting feeling about half way thru the treatments....

I had a little bit of urinary and bowel discomfort, but my doc was very good about helping me stay ahead of the side effects

A year later, I get a little stress incontinence and have to wear a pad every now and then.  Like you, I'm an part time pianist and gig on the weekends... I have a Kurzweil PC2 that's a littlle heavy---- I find when I lug it around a lot, I'm a little drippy for a day or two---nothing horrible.... Last two PSA have been undectable...so far, so good....

FYI, I just noticed the Sloan-Kettering site updated their nonograms to include a salvage radiation progression probablility.... according to to the table, my chance at being progression-free at 6 years post-surg is 80%---- which ain't bad...

You can find the nongram at http://www.mskcc.org/mskcc/html/10088.cfm

GOOD LUCK!   

Posted 3/4/2008 9:11 PM (GMT 0)
Thanks..

Good catch.  I'm about 80% on the nomograms also, which is not bad.

May our PSAs stay at 0.

 

Posted 3/4/2008 9:56 PM (GMT 0)
Hey Mozart,

I am about a week into my treatments and I will say watch the amount of water you drink before because everyone is different. I tried the 24oz. an hour before my treatment and I was in a tremendous amount of pain because my bladder I guess isn't what it used to be. My Radiation Therapist told me 10oz. about 15 minutes before treatments and so far that's been working fine. I will tell you it's an art to find that "right" amount.
Good Luck!
Posted 3/4/2008 10:05 PM (GMT 0)
♫    ♫    ♫    ♫   Hey Mozart,    Keeping you close ~ always….           In Friendship ~ Lee & Buddy
Posted 3/13/2008 2:51 AM (GMT 0)
Bumping

Today was my appt with the radiation oncologist. We decided we are going for it.

It just so happens they had an appointment for the markup tomorrow (get this puppy out of the way). I imagine the radiation will start a week or so later.

Which is goodness. Ski season will be done (I am having one last fling at Sugarbush this Monday weather permitting). Yet I will be done in time to put in my garden.

Plus radiation will not interfere with my Red Sox tickets that I got for June. I was really paranoid on that one.
Posted 3/13/2008 3:01 AM (GMT 0)
Hi Rob,
I guess it is IMRT? Anyway, you will do great. I did and you can make those Red Sox (cough, gag) games. (I'm Anaheim Angels and quite tired of the Red Sox kncking us out). You can probably also go skiing anytime again. I was not slowed during radiation and rode my dirt bike regularly.

Tony
Posted 3/13/2008 4:11 AM (GMT 0)

Thanks for the helpful information.

I will find out in late April whether or not I will have radiation therapy. 

Bob

Posted 3/13/2008 4:55 PM (GMT 0)
Well this was quick. Radiation starts next Tuesday. So it will be out of the way early May.
Posted 3/13/2008 5:04 PM (GMT 0)
I just spoke with my dad this morning and he is into his second week of IMRT and no side effects. Hopefully both of you will stay side effect AND cancer free! Good luck!!!
Posted 3/14/2008 1:59 PM (GMT 0)
Mozart - It's good to hear you are going in soon to knock it out.

I'm in the same boat with Dotings dad and 10 sessions in with no side effects. YEA!

Good Luck
Posted 3/14/2008 8:32 PM (GMT 0)
Just finnished with PROTON radiation 39 treatments so far so good was informed it would be as effective as IMRT but with less side efffects ( the only side effect I want is NO PSA ) good luck !
Posted 3/19/2008 4:34 PM (GMT 0)
Hi:
I guess Dotings dad, kdnole, and myself are all in the same boat here.

2 treatments are down and 31 to go. Hopefully it kills all the remaining cancer cells we have (and that no cells have decided yet to visit far off parts of our bodies).
Posted 3/29/2008 10:30 PM (GMT 0)
Update..9 sessions complete..24 left to go.

I'm not in any pain or anything.

I do wonder though whether I am feeling it in some respect. Hard to quantify and it may or may not be hypochondria, but sometimes I do think I feel funny.

Also am feeling a little tired, but I am not sure whether that is from the radiation or from the constant travel.

At any rate I see folks in there that tell me of the experiences with chemo and I thank God for his goodness to me.
Posted 3/30/2008 4:16 AM (GMT 0)
Mozart-

Good to hear your update! I have been thinking about you.  Glad things are going well so far.  Keep us posted! My dad gets a little more tired...he is on HT too, so it's hard to say which it is from, probably the combination..  He has been having GI side effects from the radiation, so hopefully those will pass soon.  You will continue to be in our thoughts and prayers!

Doting

Posted 3/30/2008 6:31 PM (GMT 0)
Hey Mozart, I've had 19 treatments with 11 to go and have had no side effects so far, though I understand the "hypochondria". I will tell you I too am getting tired but it's mainly because of the trip everyday. Other than that I am continuing to work out at the gym 3 times a week and have worked on keeping a normal schedule. Good luck!
Posted 3/30/2008 7:41 PM (GMT 0)
Hi Rob,
I was able to get through from this point without anything other than fatigue. And I did not know I had the fatigue until I started to feel more energy a couple weeks later. I second KD's efforts to stay fit. Of course, for you that might be a Concerto, no? Stay good, and stay playing.

Tony
Posted 4/1/2008 12:25 AM (GMT 0)

Hi Rob, hang in there, I had fatigue, some bowel probs, and a red backside, but now slowly getting back to "normal"...although the wait for the PSA on 30th is driving me nuts!

Regards Mal.

Posted 4/13/2008 9:51 AM (GMT 0)

Well 4 weeks down and 3 weeks to go.  On the downhill side.

I am really no worse than when I last reported.  The radiation doctor said that any side effects do not get worse through radiation, which I don't understand but I suppose is good news.

But I have been knocked down with a bad cold / flu.  Worst one that I have had for a few years.

My wife theorizes that the cold / flu is also a side effect (diminished immune system).  I dunno, will ask the Dr. tomorrow.

My mum has been in the hospital.  My mum will be flying home to our place while my brother goes to Florida to pick my dad up and drive home with him  They are both 83-84.  I've been concerned about her, but apparantly she is doing better.  Still weak though.

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