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So now it's radiation...

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Posted 7/22/2014 3:23 AM (GMT 0)
I haven't really posted any progress for a while so I thought I'd give an update. I like to follow many of you so I'm hopefully returning the favor for anyone in my shoes...
I recently posted about my thoracic surgery in May. My ribs and back are still sore but doing much better than right after the surgery. As usual, very little time available for recovery then on to the next treatment - radiation.

I started IMRT in June and am scheduled to finish in early August. I'm experiencing "normal" side effects but fatigue seems to be the worst.

As those of you who have experienced radiation know, the treatments themselves are fairly quick and easy. I've followed the rules that I've read here (also recommended by my RO) - full bladder, empty bowels. Easy to say, not so easy to do, especially if you have to drive an hour to your appointment every day!

I'm looking forward to ringing the bell when treatment is done and also looking forward to recovering just in time for GFMPH in September.

It's hot here but wherever you are stay cool!
Posted 7/22/2014 4:32 AM (GMT 0)
Radiation is an endurance test. Fatigue hit me the hardest during the last two weeks. The last weekend I felt so weak that I spent most of my time just siting on the sofa. My wife ended up driving me to my last couple appointments and I took a few days off work then but that was the worst of it.

I recovered quickly from the fatigue. I'd say within in two weeks I was past that part. Still had other SEs that linger on but nothing that is bad or difficult to manage. You'll be fit and ready to go for September.

Andrew
Posted 7/22/2014 8:59 AM (GMT 0)
Gunner,

I am in the same boat.  Half way home with my treatments.  Also have to drive an hour each way and then go to work.  Very frustrating yesterday.  Went for treatment at 7:45 AM.  Just moments before I was to receive treatment strong thunderstorm came through and lightning knocked out everything. Waited 45 minutes and tech finally said the whole system was down for the day.  So a wasted trip and causing my treatment to be extended for another day.  Getting ready to leave this morning and hope everything is operating.  Side effects have been rather mild although starting to feel the urinary urgency.  Making sure I have a full bladder can be a challenge.  Some days I am about to burst since I want to make sure my bladder is full.  I have to dash to bathroom when treatment is done.  Fatigue is starting to creep in. In the afternoon I become so tired and sleepy. So far a brief nap, about ten minutes, rejuvenates me.

Posted 7/22/2014 12:15 PM (GMT 0)
Ah, the memories devil devil

I did my RT back in 2010. Mine is described day by day in the thread linked in my sig below. The fatigue sort of cleared up, but to this day I have to take an afternoon nap to make it to the 10pm news.

Hang in there!
Posted 7/22/2014 12:27 PM (GMT 0)
Thanks for the radiation tips that will be upon me soon.

Still deciding on low dose brachy versus high dose HDR with a boost versus 2 weeks of very high dose SBRT by Dr Chris King at UCLA, the one Tall Allen recommends.

The first two are offered locally in Florida, the latter only in LA which is the spouse's concern.

See you all in Rochester hopefully post radiation and associated fatigue.

LupronJim
Posted 7/22/2014 1:45 PM (GMT 0)
Gunner,

I am going to have number 20 of 40 treatments today. It IS an endurance contest. I have an hour and 20 minute drive. So far no bad side effects. I try to walk a mile or so each morning. May help keep energy level up. Good luck all.

Carl
Posted 7/22/2014 1:50 PM (GMT 0)
One helpful tip for dealing with the fatigue is to keep a notebook by the couch and have your wife write down how your favorite shows end each episode. My wife and I watch a number of who-dun-its and during the second half of my radiation treatments I would reliably fall asleep fifteen minutes before the end of the show. I would never make it through the second-to-last commercial break.
Posted 7/22/2014 5:31 PM (GMT 0)
Well Peter that explains it. The past week or so I have been falling asleep while watching tv. Didn't even realize I had dozed off. I thought it might be my medication but the radiation treatment offers a better explanation. Thanks for your tip...I will have to seriously consider your suggestion. Fortunately most programs we watch have already been recorded so it is easy for me to rewind if needed.
Posted 7/22/2014 10:35 PM (GMT 0)
That's good stuff guys. Thanks for the insight and for the well wishes. I was tired when I started these treatments so it's been a real challenge. As seen in my signature below, the last year has been a blur with chemo, 2 surgeries and now these radiation treatments. I know I'm not unique though, and that's why I appreciate you responses and the ability to vent here....

On a side note, I saw a guy walk in to the clinic a week ago and it was clear that he just didn't get there in time before his diarrhea shot down his leg soaking his jeans on one side of his leg and even dripping out on his shoes. I felt so bad for the guy, he seemed humiliated. I have been extra careful since then to always carry a change of clothes, wipes and aquaphor for accidents of any sort wherever I go.

Oh, and Peter, the guy gets the girl and they catch the bad guy. Unless you were watching a Quentin Tarrantino movie in which case you didn't miss anything at the end, it happened at the beginning.

LOL.
Posted 7/22/2014 11:25 PM (GMT 0)
I can appreciate these comments. I have six more to go. I was so tired today I had to withdraw from my golf match. My bowels have been a mess varying from constipation to the other. Monday I got some prescription suppositories to help with anal inflammation and aching hemmeroids. I'm taking flomax to reduce urinary frequency and urgency. I get up five times a night to void. I finally saw a dietician who changed my diet to reduce diarrhea. You just can't eat a normal good diet with fresh fruit and veggies and alcohol! Lol Can't wait til this s**t is over .
Bob
Posted 7/23/2014 3:16 AM (GMT 0)
Endurance test for sure. It's hard to believe I've been doing this for >5 weeks already.
I have aquaphor in tubs, tubes and travel bags for the inflammation. Baby wipes instead of toilet paper. These things help to soothe a little on the outside but bowel movements are still painful whether it's constipation or diarrhea.

You know the exhaustion is bad when you have to quit playing golf!

I'm looking for rides for the last couple of weeks. My daughter is learning to drive and she came with and drove us home one day last week. My wife drove me yesterday - it's great having a ride. I feel exhausted coming out of the clinic and early afternoon is tough to stay awake.

Today the radiation tech said I was starting "the boost". 11 more treatments to a targeted area in the prostate bed. 1 down today, 10 to go.

There's a bell outside the patient entrance for those that finish treatments. I can't wait until I can ring the bell!!
Posted 7/23/2014 9:02 AM (GMT 0)
Guess I am fortunate in one way. Clinic has been very accommodating because of the travel and my job. They actually let me come in early, 7:45, and so far I am a little more alert. I really think it would be more difficult if I had to wait till later in the day. I will find out next week as I am having to adjust that schedule because my wife has surgery and I have to accompany her. And wouldn't you know, surgery is in another city. So after hospital release I will drop her off at the hotel we plan to stay in then drive 90 minutes for my radiation treatment and then head straight back to the hotel. I had considered cancelling the appointment and adding it on at the end but my RO told me yesterday if I miss another treatment they will have to give me two additional treatments. Missed yesterday and Monday due to a storm knocking out their system Monday and a glitch in their computer and my treatment plan Tuesday. Apparently my treatment plan was ready to run Monday when lightning struck the center. I was just moments away from starting treatment when the lightning struck. Makes me wonder what would have happened if I had actually been in treatment when it hit.
Posted 8/1/2014 5:59 PM (GMT 0)
Break60 - you must be done now with radiation, right?

Tdnjam - you getting close, too? Hope your wife is doing ok.

I will finish next week. For now - TGIF!!!
Posted 8/1/2014 8:08 PM (GMT 0)
Gunner, down to 8 treatments.  Last couple of days have been rather grueling with the long drive for radiation and dealing with my wife's medical condition.  But we are both back home and looking forward to a long weekend's rest.  She's been dealing with a kidney stone and wanted to wait until I finished with my radiation treatment but I insisted she have it taken care of now.  Think she is happy I insisted because her discomfort was getting worse. 
Posted 8/1/2014 8:59 PM (GMT 0)
So I got my completion certificate on July 31! Happy to have it over. I was four days later than planned due to holiday, too much gas, and bleeding hemmerhoids, but thank goodness it's over. It really wasn't bad at all til the end. All the technicians and the RO were friendly, concerned, and professional but we had a few laughs. Now all I can do is pray that it actually worked.
Since I'll be in Lupron for at least a year, I won't get a hint whether IMRT achieved the objective of killing what PCa was left in the prostate bed until I stop ADT. Just gotta be positive and keep on truckin' !
Bob
Posted 8/1/2014 10:14 PM (GMT 0)
Break60, I hear ya brother. My RT finished just under a year ago, and I will be on ADT for 3 years.

Since then, undetectable PSA which is wonderful, but my RO says he expects to see undetectable throughout the ADT. I hope he's right, but we know G9s are somewhat unpredictable. Same thing, won't know RT's effectiveness until the ADT wears off and testosterone recovers.

All the best for you, and sure hope your treatments were effective! The ADT is a real treat.... the year will be done before you know it.
Posted 8/1/2014 11:31 PM (GMT 0)
Congrats to those of you who have finished or are getting close to the finish line.

There are a couple of reasons I am leaning SBRT if I can talk the wife into it. She is concerned that I have no close relatives locally in LA like I do here or Chicago with Dr Brian Moran or San Francisco with Mack Roach.

1. The 7 weeks of radiation is cutting it pretty close to GFMPH Rochester, else do it after.

2. With SBRT at most two bad weeks as it only lasts 2 weeks.

3. I have been trying to get my PSA on paper at least to rise two consecutive tests to qualify for Provenge. My baseline was <0.04 and yesterday's =0.03 is not comparable with respect to up or down. So still need two more PSA tests 14 days apart which means another month unless I try another assay to see if it comes out >+0.04 for increase #1.

Dr Turner an associate of Scholz and Lam thinks it is worth deferring to get the PSA increases and leverage the so-called abscopal effect from Provenge that Tall Allen counseled me on.

UF & Shands offers a free dorm room (no Hilton Points) that spouse and I could stay in each week Monday check in to Friday check out and then weekends at home to avoid the 1.5 hour drive each way. Issue is what to do with dogs for 7 weeks.

I have an appt with local RO on Monday at 10 AM and then with Shands RO on Friday at 11 AM. I assume both offer low dose brachy and probably high dose SBRT with the boost, but do not think either offers SBRT that I prefer.

I have a ton of unused SW Air miles refunds from when I changed SBRT plans, that I thought would be transferrable but it turns out only I can use them. So no net cost to fly to LA and back a couple times for fiducials and CAT scan a week before treatments begin, home a week while Dr King does the detailed dosing plans, and then back to LA for SBRT.

If I plan it right, could surround the PCRI conference first weekend of Sept with Mon-Wed-Fri SBRT te week before and Mon-Wed (or Tue-Th due to Labor Day) the week after PCRI.

LupronJim
Posted 8/8/2014 8:41 PM (GMT 0)
Well, I made it to the end of my radiation without any major accidents or issues. The nurses met me outside the treatment room and asked me to ring the bell. I rang it with such vigor that I think even they were surprised. It was such a relief to finally get to the end of a scheduled treatment course and feel like this may be it for a while without scheduling any new procedures or other aggressive treatments. I knew there would be 36 treatments so it was really an emotional moment to literally ring the bell after #36.

I am sure my side effects could be worse but my biggest issue from the radiation is fatigue. I have other issues and pain that I believe is unrelated to the radiation (surgery & HT SE's) so I'm trying to manage that as well.

I will continue on my Xtandi and Lupron and hope to settle in to that "normal" routine... At least until my next Scan & PSA anyway.
Thanks for the posts on this thread and good luck to you who are continuing to receive radiation. I hope your side effects are minimal and your energy stays up!

Keep the faith!
Posted 8/8/2014 9:02 PM (GMT 0)
Congrats on reaching the milestone. Looking forward to helping you celebrate the feat in Rochester, and then mine likely starts a week or so after Rochester trip.

LupronJim
Posted 8/8/2014 9:41 PM (GMT 0)
Gunner, congrats on finishing and ringing the bell. I remember the feeling of ringing it in January 2010. Fatigue was also about the only effects I had and it passed rather quickly afterwards.

Look forward to meeting you in NY next month.

Sonny
Posted 8/9/2014 12:41 AM (GMT 0)
Gunner congrats on making it to the finish line.  Hope you get good numbers.  I have three treatments remaining and I would have to say fatigue has been the main issue.  I was completely drained around noon today and fortunately was able to take a three hour nap.  Did have a major bout with diarrhea early this morning but I think it was more my fault than the radiation.  I was cautioned to stay away from certain fruits and vegetables but I just couldn't resist a nice portion of honeydew melon last night....and boy did I pay the price! 
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