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ADT and SRT Journey

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Posted 1/23/2018 9:54 PM (GMT 0)

AZ Guy said...
I signed up for 6-month course of ADT. I was told that ADT can both stop progression and kill cancer cells. I have never heard anything about what cells get killed and which ones stop. Have you seen anything...like ADT tends to kill what kind of cells? For example G6 or inside the prostate, or....

My understanding is that HT doesn't actually kill cancer cells, but helps bring about their death by depriving them of the testosterone that they need to grow and spread. So when radiation damages the cancer cells they are unable to repair themselves. Also I think I've read that it is the grade 4 cancer cells, which would be Gleason 7 and above, which have the ability to metastasize. G6 cells tend to remain contained within the prostate and to not grow out. Just something I've heard...
Posted 1/24/2018 6:41 AM (GMT 0)

Skypilot56 said...
Hi John yep getting closer to the end I had 37 should be done Feb 8th.

Larry


My target end date is Feb 8th as well.

So far so good ... I dribble a little more than before... and I feel tired, but the biggest issue so far has been the weight gain... gosh, it's crazy. I've gained like 20lbs.

Sky, whats your biggest issues so far?
Posted 1/24/2018 1:48 PM (GMT 0)
I am having treatment 35 of 39 today so i'll be done next Tuesday. Looking forward to it. I have not had any bad SE other than being tired and a screwed up bladder every now and then. Sometimes I leak a lot, other times hardly at all. My weight goes up or down +/-4 lbs almost every time the nurse weighs me. Right now I'm at the exact weight where I was when I started HT the end of November.
I am looking forward to getting back on my bike and getting more exercise. Really have missed riding.
The HT hot flashes have not been too bad this week and have not woken me up the few days at night.
Stay strong and fight on my friends!
Posted 1/24/2018 2:13 PM (GMT 0)
Good Morning guys great to have people give us their personal experiences kinda makes us realize that were not all experiencing the same exact SE's. I'm noticing getting up now couple extra times a nite but the biggest one has been the weak stream. Yesterday I was so darn tired that I was almost light headed crashed for a 3 hr nap that's more than I sleep at nite. We have a gentlemen here from Philly that had quite a chat with yesterday when I gave him a ride to the store. He has been thru RP,SRT.ADT and Chemo now he's getting the proton beam to the spots where it has metastasized in his bones that they found on the choline 11 scan. Like me he was pretty active in sports especially tennis but his MO told him that he had actually overdone his activities you know like runners hitting the wall and once guys like us with aggressive advanced cancer that we actually hurt our long distance survival because the body has to overcome hitting the wall and fighting the cancer so he has been kinda scolding me for all the exercise I do. Has anybody else heard of this?

Larry
Posted 1/24/2018 2:54 PM (GMT 0)
It stands to reason that exercise (like most things) can be overdone. He probably should take it down a notch.

I'm going to talk to my RO on Friday about whether we should extend my treatments. I'm not experiencing bad side effects and only get one chance at this SRT. Want to be sure we are being aggressive enough.
Posted 1/24/2018 3:03 PM (GMT 0)

AZ Guy said...
I'm going to talk to my RO on Friday about whether we should extend my treatments...
only get one chance at this SRT. Want to be sure we are being aggressive enough.

That's just what I did. I wanted to kick the beast while it's down. I'd rather spend another six months on Lupron now than have to go back on it again a few years down the road.
Posted 1/24/2018 6:21 PM (GMT 0)
I go in for my simulation / planning on Feb. 28 for SRT - so I'm a little behind you guys. We've had scheduling problems between my work schedule and my RO's schedule.

I can't comment on SRT SE's, but the Lupron SE's have been interesting - I have pain in both my hands and feet - right at the knuckles. It has made my arthritis pain in knees and shoulder worse. I still feel both injection sites - not a lot of pain, but I know EXACTLY where they are. No libido - with a T of 31, no surprise. It also seems to have changed my color perception - reds, oranges and yellows are much more vibrant than before Lupron - don't know why, and likely to get a blank stare from any doc on that one.

Curious if others have seen anything similar.

Rob
Posted 1/24/2018 9:54 PM (GMT 0)
Rob I got the pain in my hands after about 2 weeks on Lupron but about a month ago that went away as far as the vision I have noticed it seems like things are coming at me from the sides yet when i turn and look nothing there doesn't happen often maybe once a week have no idea if related to Lupron or not. After my consultation with my team today they want me to start on flowmax so gotta walk over to the pharmacy and pick it up .

Larry
Posted 1/24/2018 10:20 PM (GMT 0)
Interesting. There have been a couple times now when sitting watching TV, I see something in the peripheral like its moving on the couch. I turn expecting to see a lizard or spider or something and there's nothing there. Strange.
Posted 1/24/2018 10:47 PM (GMT 0)
I've experienced similar visual anomalies as well. As for the joint pains it's difficult to determine if it's due to the HT or just an existing condition worsening with age.
Posted 1/25/2018 3:42 AM (GMT 0)
After six weeks on Casodex 50mg and two weeks on Eligard (Lupron) all I can report is a little light headedness and some E.D. may be setting in. Simulation in mid February and two months of RT starts in early March.

The SRBT clinical trial at UCLA that Tall Allen informed us about holds much promise for the future.
Posted 1/26/2018 11:14 AM (GMT 0)
I have been reading on a couple of other threads about insomnia. This is something I believe probably affects millions in our world today, anybody that has worked shift work can attest to this. I have suffered insomnia probably for 30+ years i blame a lot of it on shift work even tho I have worked day shift mostly for the last 10 years. Another is that I have never been able to sleep much more than 5 hrs at a crack. In my 6th week of radiation now and am starting to notice the fatigue they talk about. Forced myself not to take a nap yesterday to see if I could sleep better last nite went to bed at 9:30 and still awake this morning at 3 so a nap this morning after treatment is gonna feel pretty good!! We'll see how flowmax effects my sleeping as I get more into it but just after 2 days my stream has gotte a lot better.

Larry
Posted 1/26/2018 5:10 PM (GMT 0)
Back when I was ‘just’ being treated for LUTS, I found Rapiflo to be much easier to tolerate than Flowmax.

As a pilot, my sleeping patterns, were a constant challenge. Keep in mind, Larry, that most of the very recent insomnia posts have been from only one person, and they just started for him. Not very credible IMHO. Rather than start a new thread with each experience, the forum would be better served if he just launched a blog.

Tough it out.....
Posted 1/28/2018 12:38 AM (GMT 0)
Larry
Have only been reading this thread as I don't really qualify but did want to say I hope the flowmax works as well for you as it does for me. I have NO issues with it.

Roger
Posted 1/28/2018 12:47 AM (GMT 0)
Hi Roger well even tho you didn't have srt you still had radiation so you kinda count 😆 thnx for the tip on flowmax it is definitely helping with my stream. I think the radiation is finally catching up with me. Been reading on a couple of other threads about doses of radiation I'm getting 72 gy in 37 doses in the prostate bed and just a little outside of it not much tho. It's a different kind of fatigue kinda hard to explain almost like you really have to concentrate to think I haven't been home for 3 weeks and came home this weekend cause I had to pay bills while figuring out the bills and checkbook I really had a hard time trying to stay focused I kinda put the blame on Lupron. One of the gals down at the hope lodge has been calling me loopy larry so kinda got a new nickname but that's alright kinda lightens up the day sometimes. You know always good to laugh at yourself!!

Larry
Posted 1/28/2018 1:12 PM (GMT 0)
It's called Lupron brain, and is very common. Some call it mental fog. It seems to get worse with time, and is right up there with my wife's chemo brain. She and I often joke that between the two of us we have one whole brain.

Still, we're able to get things done. No major banking errors or meds mixups. It's just a feeling like you're not all there. I smoked for 30 years and I remember feeling a bit like this when I quit twenty years ago. People I've spoken with who had whole head radiation also report a feeling of stupification.
Posted 1/29/2018 4:39 PM (GMT 0)
Good Morning Guys, well start of week 7 for me the fatigue is really starting to be noticeable, Noggin finishes up tomorrow will be interested in how he feels in a couple of weeks the flomax is working good for me only got up twice last nite and slept till 5 this morning that was great!!!!! It was nice to have a couple of days off.

Larry
Posted 1/29/2018 4:47 PM (GMT 0)

RobLee said...
It's called Lupron brain, and is very common. Some call it mental fog. It seems to get worse with time, and is right up there with my wife's chemo brain.[o/quote]

I sure hope it’s quickly, and naturally, reversible for both of you Rob...like I think the fatigue is.

Posted 1/29/2018 4:58 PM (GMT 0)
Garyi, are you starting SRT next month?
Posted 1/29/2018 5:28 PM (GMT 0)
So I told my RO that I'm doing very well managing side effects and could do extra treatment given I only get one chance at SRT. His response was that the plan, based on studies, maximizes the curative impact and any additional treatments will only add to toxicity. So there you have it. Last treatment is a week from today.
Posted 1/29/2018 5:36 PM (GMT 0)
AZ - yep pretty much what the RO told me in the initial consultation that they look at everything then make up the treatment plan. What's interesting if you miss a day they just add it at the end the people getting the proton beam can have 2 treatments in one day if there is 6 hrs in between. I found that interesting but I suppose that it is such a small area that they treat they aren't so worried about the toxicity?
Posted 1/29/2018 5:47 PM (GMT 0)
Could be. I wonder about the proton vs the photon differences. Proton may be the future but photon is more proven. Did you have discussion with the RO about what was best for you?
Posted 1/29/2018 6:27 PM (GMT 0)

Skypilot56 said...
Garyi, are you starting SRT next month?

Yes, simulation in two weeks and radiotherapy starts the end of February.

I was originally on the same schedule as you and several others, but in changing my mind and going with ADT, the schedule was pushed back by two months.

Speaking of which, the Lupron effects are so mind, after three weeks, I'm wondering if the syringe was really empty.
Posted 1/29/2018 7:08 PM (GMT 0)

Skypilot56 said...
What's interesting if you miss a day they just add it at the end ...

I missed a couple of days because our entire area lost power during hurricane Irma. They got most of the guys in for an added Saturday treatment, plus added an extra day on the end of my Tx schedule. You just can't plan for natural disasters.



garyi said...
... the Lupron effects are so mind, after three weeks, I'm wondering if the syringe was really empty.

Assuming you meant to say "mild" (Lupron on your "mind" already??) the first few weeks are fairly mild, especially for us older guys who are a little short on the natural T supply anyway. For me it was about six weeks before the hot flashes became bothersome, and 90 days before I was begging for help.

Good luck with your treatments!
Posted 1/29/2018 8:12 PM (GMT 0)

RobLee said...


garyi said...
... the Lupron effects are so mind, after three weeks, I'm wondering if the syringe was really empty.

Assuming you meant to say "mild" (Lupron on your "mind" already??) the first few weeks are fairly mild, especially for us older guys who are a little short on the natural T supply anyway. For me it was about six weeks before the hot flashes became bothersome, and 90 days before I was begging for help.

Good luck with your treatments!

Thanks, Rob....now the Lupron reaction to come IS on my mind. smilewinkgrin
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