ADT and SRT Journey Part 2

Thanks, Larry. Day 1 was uneventful. It probably won’t be any more monotonous than work.

SP, congrats on completing day 1! I should be starting just as you’re finishing up!

Mike

Way to go SP, and all the best Hardlyrob. I’m a couple of months behind but will follow your progress.

Noggin, did your psa actually go down from .11 to .01 in six weeks before secondary treatment?

My thanks to everyone who sent good wishes for day 1. Back atcha!
The only excitement was figuring out how long it would take to drive from our hotel to the hospital in rush hour traffic. (We nailed it.)
The fun won’t start till the SEs kick in. And I’m planning a party on day 27, when I’ll reach my out-of-pocket limit for 2018.

Yes Larry, my surgeon is part of my team and he wants to follow me because I participated in a couple of his trials. He wanted a follow up. Also if my continence doesn't get better I would go to him for a fix if possible. My local urologist is just doing my hormone treatments. I'll keep my surgeon and oncologist at Emory to keep this beast at bay. I basically have 5 docs now. My local GP, Radiologist and urologist local, and then the 2 docs in Atlanta. They all share information.

Skypilot56 said...
Noggin2u2, We like those undetectable numbers hey? Helps when the hot flashes hit! LOL I'm curious why your meeting with your surgeon is he part of your team?

Larry

Noggin2u2 said...
.....I basically have 5 docs now. My local GP, Radiologist and urologist local, and then the 2 docs in Atlanta. They all share information.

That is so rare, and amazingly good medicine. You are most fortunate.

In my travels and visits with too many physicians, it's become clear that they, and their medical departments are very reticent about sharing (trusting?) data with each other. Probably some ego involved, MIS systems that are uncooperative, and a lot of liability fear.

We patients are the losers!

Rob, wishing you the best on your SRT treatments! get the water drinking down and you got it made! LOL no it's really nothing.


Larry

Skypilot56 said...
Rob, wishing you the best on your SRT treatments! get the water drinking down and you got it made! LOL no it's really nothing. turn

Thanks Larry

Rob

Noggin2u2- Good News! and here's to many more undetectable's

Post Edited (Skypilot56) : 3/14/2018 10:30:12 AM (GMT-6)

Saipan Paradise said...
Love your ADH and PSA news, Noggin!

Thanks Richard!

Polar - Welcome to our group really wished you didn't have to be here but hopefully we can give you some support and you might be able to pick up some tips on your journey through this time. If you have been following our thread for a while you probably have seen that a lot of guys experience different SE's. I'll have to say mine was pretty good until the last 2 weeks at which time I started getting more fatigue and having trouble with my flow. I tried to exercise every day- walking for sure, swimming some days, riding my fat tire bike some days, working out at gym some days. I was at the American Cancer Hope Lodge for 7 of my 8 weeks I was at treatment and I can tell you that the guys that were able to exercise had a lot easier time. I also saw the guys that were younger had a easier time. Every guy there that was on hormone treatment had to fight to keep the weight off and everybody suffered hot flashes. I retired last month 2 weeks after my radiation ended one of the reasons was that part of my job involved working 12 hrs at night. There was no way I could do that. I can honestly say that my experience post radiation has been worse then during been having trouble with incontinence minor but still a pain in the *ss. I'm snowshoeing, cross country skiing, fat tire riding so getting exercise but still have to take naps, not sleeping good up lots of times to go the bathroom. When I exercise I really have to push myself my buddies help me to get out great to have a support team! I'm blaming 3 major surgeries last year and the ADT and SRT treatments and the lack of testerone as the reason I'm not gonna be running 100% for a while? But guess what I'm 62 can go out and cross country ski for 3 hrs, or snowshoe for 4 hrs. How many guys in the general population my age without cancer can do this? So like I tell my wife I got life good 😊 Just spent 10 days with my grandson! You will do just fine in your journey. Any idea on your length of ADT?

Larry

Welcome Polar, sorry you have to go through the 'triple play' like we all have.

A few of the guys I would see in the locker room for radiation at MD Anderson were also working full time. When I was getting hit with quite a few Gray units of radiation, I would get really, really tired in the afternoon and needed a nap of one to two hours. Near the end of my treatments, the Gray units were tapered down and I wasn't nearly as tired.

Since you have to deal with a day to day job, I think an early appointment would work for you but sometimes MDA would have a machine down or maybe you need to wait an hour for your bladder to get to a certain volume. Also MDA sometimes had to schedule me in the afternoons instead of the usual 10 am - so my point is you most likely won't be able to have a specific set daily schedule.

Lupron - I had a difficult time dealing with its side effects. Some of the guys aren't that bothered with it and some are. Most of us get the hot flashes/sweats, get the mental 'fog', and I was either cold or hot. There was no in-between, I was either covered up and cold, or running a fan on me. That was really, really annoying.