ADT and SRT Journey Part 2

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Skypilot56
Veteran Member


Date Joined Mar 2017
Total Posts : 734
   Posted 3/12/2018 12:21 AM (GMT -6)   
Richard good to hear your still alive and kicking!! Just wanted to wish you the best on starting your treatment today hope it goes good for you! turn I have been having some minor issues with incontinence hoping it's just because I got off the flowmax completely could not take the lightheadness and the feeling of the room spinning every time I laid down. Keep up exercising and the next thing you know it will be over seems so long when you start and then the last couple of days you can't believe that its almost over and you don't have to plan your life around treatments. Almost a sense of emptiness might be a better way of saying it. Oh well the hot flashes make up for it!! LOL

Larry
Male 62 DX @ 60
Dad had PC
2002. Psa. .08 Enlarged Prostrate
2014. Psa. 3.8
2016. Psa. 19
3-08-17 RP Mayo, Mn
Gleason 9, pt3b, SV + 1 nerve, N-Margins 35 LN removed clear
Prostrate 45 grams
4-20-17 Incarcerated Umbilical Hernia
6-13-17 psa 0.13
7-19-17 psa 0.12 3TMRI with coil - clear
10-11-17 psa 0.16
10-12-17 Lupron
12-13-17 psa <0.10
12-18-17 SRT
2-7-18 SRT done 72gy

Saipan Paradise
Veteran Member


Date Joined Sep 2017
Total Posts : 785
   Posted 3/12/2018 5:01 AM (GMT -6)   
Thanks, Larry. Day 1 was uneventful. It probably won’t be any more monotonous than work.

Noggin2u2
Regular Member


Date Joined Jul 2017
Total Posts : 33
   Posted 3/12/2018 7:11 AM (GMT -6)   
Yep Richard, it will be over before you know it and you'll do fine. You have a great attitude.

Larry... Flomax and I never agreed even way back before my PC. I tried it again about a week into RT and dropped it in two days. I was taking it so I would hopefully not have to get up every two hours. My incontinence was getting really good before radiation and even during it until the last two weeks when they changed the targets. I went from 3 pads a day lightly wet to now 6 to 9 with some soaked. I never know what to expect. 3 nights ago I had to change pads 3 times. Last night I didn't have to change at all and have had the same pad on 10 hours and it's still dry. Go figure!
I've got an appointment with my primary doc today for 6 month check up and an appointment with my HT Urologist Wednesday to get the results of my PSA and testosterone that was drawn last week.The big discussion with him will be how long to stay on these hormones. And if I can drop the Casodex. It's also time to get back to my surgeon at Emory who wanted to see me a month or two after RT.
All in all doing pretty good and energy level is getting better. A lot less day time naps and if I do they are pretty short. Pre HT and RT my PSA was .01, let hope it stays there! Will let you know.
Stay strong and fight on!
Noggin
DX @ Age 64 4-17; Fusion biopsy Gleason 7 Bone and CAT Neg
1999 PSA 3.0 enlarged prostate chronic prostatitus
PSA 4-2015 7.7
PSA 11-9-2015 8.9
Biopsy 12-2015 Neg
1-11-2017 13.7
2-3-2017 14.7
RALP 6-14-2017 Gleason 9 4+5; pT3a;pNO; + bladder neck
PSA 7-7-2017 .11
PSA 8-10-2017 .1
PSA 9-20-2017 .11
PSA 10-31-2017 .01
HT stared Casodex 11-27-2017; Lupron 12-7-17; Started RT 12-4-2017, 39 treatment

Crazyick
Regular Member


Date Joined Apr 2012
Total Posts : 184
   Posted 3/12/2018 7:32 AM (GMT -6)   
SP, congrats on completing day 1! I should be starting just as you’re finishing up!

Mike

Hardlyrob
Regular Member


Date Joined Sep 2017
Total Posts : 119
   Posted 3/12/2018 8:36 AM (GMT -6)   
Congratulations Saipan Paradise! One down!

I'm right behind you - I start on Wednesday.

Rob
5/2017 PSA 34.2 age 53
6/2017 Dx by biopsy - 9 of 14 positive; Gleason 7 (4+3) 5% to 90% cancer
8/24/2017 RARP, Dr. Canes - Lahey Burlington (MA)
4/8 lymph nodes positive
Extraprostatic extension
Positive margin 5 MM
Seminal vesicle invasion
pT3b; pN1; M0
10/24/17 PSA 0.13
12/11/17 Started 18 months of Lupron
1/18 PSA <0.1; T=31
SRT 3/14 - 5/7/18 - 39 fractions

Progressing
Regular Member


Date Joined Aug 2017
Total Posts : 283
   Posted 3/12/2018 12:18 PM (GMT -6)   
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?
Age 76, excellent health except PCa
Psa 7/13=8 with BPH, 9/17=20.44
7/20/17, Biopsy, 5/12 cores PCa all right side, Gleason 4+3, PNI
MRI and CT no evidence of metastases
Laparoscopic surgery MSKCC 10/31/17, left nerves spared, pathology T3aN0, G4+3, focal EPE, negative margins, no multicentricity, BPH
Continent but ED
12/14/17-psa 0.10; 1/25/18-0.11, 3/5/18 - 0.12.

Noggin2u2
Regular Member


Date Joined Jul 2017
Total Posts : 33
   Posted 3/12/2018 3:21 PM (GMT -6)   
Progressing said...


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


Yes it did go down. I got my PSA results from the blood work taken last week and it came back >.01 which is undetectable. I expected that since I started HT in late November and RT in early December.

Saipan Paradise
Veteran Member


Date Joined Sep 2017
Total Posts : 785
   Posted 3/12/2018 3:50 PM (GMT -6)   
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. turn

Skypilot56
Veteran Member


Date Joined Mar 2017
Total Posts : 734
   Posted 3/14/2018 7:27 AM (GMT -6)   
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
Male 62 DX @ 60
Dad had PC
2002. Psa. .08 Enlarged Prostrate
2014. Psa. 3.8
2016. Psa. 19
3-08-17 RP Mayo, Mn
Gleason 9, pt3b, SV + 1 nerve, N-Margins 35 LN removed clear
Prostrate 45 grams
4-20-17 Incarcerated Umbilical Hernia
6-13-17 psa 0.13
7-19-17 psa 0.12 3TMRI with coil - clear
10-11-17 psa 0.16
10-12-17 Lupron
12-13-17 psa <0.10
12-18-17 SRT
2-7-18 SRT done 72gy

Noggin2u2
Regular Member


Date Joined Jul 2017
Total Posts : 33
   Posted 3/14/2018 7:44 AM (GMT -6)   
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

Skypilot56
Veteran Member


Date Joined Mar 2017
Total Posts : 734
   Posted 3/14/2018 9:09 AM (GMT -6)   
Gosh if all the guys could have the good fortune that you and I have had having a complete team to work with, the insurance to cover this team also, I think it would make everyone's journey with this d*mn PCA a little easier.
Male 62 DX @ 60
Dad had PC
2002. Psa. .08 Enlarged Prostrate
2014. Psa. 3.8
2016. Psa. 19
3-08-17 RP Mayo, Mn
Gleason 9, pt3b, SV + 1 nerve, N-Margins 35 LN removed clear
Prostrate 45 grams
4-20-17 Incarcerated Umbilical Hernia
6-13-17 psa 0.13
7-19-17 psa 0.12 3TMRI with coil - clear
10-11-17 psa 0.16
10-12-17 Lupron
12-13-17 psa <0.10
12-18-17 SRT
2-7-18 SRT done 72gy

garyi
Veteran Member


Date Joined Jun 2017
Total Posts : 955
   Posted 3/14/2018 9:19 AM (GMT -6)   
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! cry

Hardlyrob
Regular Member


Date Joined Sep 2017
Total Posts : 119
   Posted 3/14/2018 9:40 AM (GMT -6)   
I count myself as lucky that my Uro, RO, MO and sexual health doc are all in the same practice - unified charts, so everyone knows what everyone else is doing. The three are routinely a team on PCa cases - particularly the complex ones like me.

I'm also lucky that Lahey gives patients access to everything in the chart - test results, surgical notes, biopsy readings - so I can see what's going on, not be surprised by a result and have better communication with my various docs. I can also ask questions directly to the doc on line - and so far they've been great at getting back to me in a timely manner.

Rob
5/2017 PSA 34.2 age 53
6/2017 Dx by biopsy - 9 of 14 positive; Gleason 7 (4+3) 5% to 90% cancer
8/24/2017 RARP, Dr. Canes - Lahey Burlington (MA)
4/8 lymph nodes positive
Extraprostatic extension
Positive margin 5 MM
Seminal vesicle invasion
pT3b; pN1; M0
10/24/17 PSA 0.13
12/11/17 Started 18 months of Lupron
1/18 PSA <0.1; T=31
SRT 3/14 - 5/7/18 - 39 fractions

Skypilot56
Veteran Member


Date Joined Mar 2017
Total Posts : 734
   Posted 3/14/2018 10:20 AM (GMT -6)   
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


Larry
Male 62 DX @ 60
Dad had PC
2002. Psa. .08 Enlarged Prostrate
2014. Psa. 3.8
2016. Psa. 19
3-08-17 RP Mayo, Mn
Gleason 9, pt3b, SV + 1 nerve, N-Margins 35 LN removed clear
Prostrate 45 grams
4-20-17 Incarcerated Umbilical Hernia
6-13-17 psa 0.13
7-19-17 psa 0.12 3TMRI with coil - clear
10-11-17 psa 0.16
10-12-17 Lupron
12-13-17 psa <0.10
12-18-17 SRT
2-7-18 SRT done 72gy

Noggin2u2
Regular Member


Date Joined Jul 2017
Total Posts : 33
   Posted 3/14/2018 10:53 AM (GMT -6)   
garyi said...
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! cry


Yes, I have been blessed with the doc's I'm working with. They all listen to me and to each other. My local doc's are easy to get to by phone if needed and my Emory doc's gave me their cell phone numbers so my local doc's don't have to go thru the Emory "gatekeepers" to get in touch with them. It has worked well so far.

I got very good news today at my urology appointment. I will take the remaining 70 Casodex pills that I have left and just let the 6 month Lupron shot I had in December run out and not get another one. We will monitor my PSA on a regular basis. It will be nice to be hormone free when all this gets out of my system.

Hardlyrob
Regular Member


Date Joined Sep 2017
Total Posts : 119
   Posted 3/14/2018 10:57 AM (GMT -6)   
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
5/2017 PSA 34.2 age 53
6/2017 Dx by biopsy - 9 of 14 positive; Gleason 7 (4+3) 5% to 90% cancer
8/24/2017 RARP, Dr. Canes - Lahey Burlington (MA)
4/8 lymph nodes positive
Extraprostatic extension
Positive margin 5 MM
Seminal vesicle invasion
pT3b; pN1; M0
10/24/17 PSA 0.13
12/11/17 Started 18 months of Lupron
1/18 PSA <0.1; T=31
SRT 3/14 - 5/7/18 - 39 fractions

garyi
Veteran Member


Date Joined Jun 2017
Total Posts : 955
   Posted 3/14/2018 11:01 AM (GMT -6)   
Noggin2u2 said...

.....I got very good news today at my urology appointment. I will take the remaining 70 Casodex pills that I have left and just let the 6 month Lupron shot I had in December run out and not get another one. We will monitor my PSA on a regular basis. It will be nice to be hormone free when all this gets out of my system.


Excellent news!

Does that mean you'll go about a month on Lupron, without taking Casodex?

In my case, I've wondered if a few extra weeks of Casodex has some trailing benefit, once the 6 month Lupron shot wears off.

If your amazing team thinks not, that's good enough for me. smilewinkgrin

Skypilot56
Veteran Member


Date Joined Mar 2017
Total Posts : 734
   Posted 3/14/2018 11:22 AM (GMT -6)   
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
Veteran Member


Date Joined Sep 2017
Total Posts : 785
   Posted 3/14/2018 11:41 AM (GMT -6)   
Love your ADH and PSA news, Noggin!

Noggin2u2
Regular Member


Date Joined Jul 2017
Total Posts : 33
   Posted 3/14/2018 12:13 PM (GMT -6)   
Saipan Paradise said...
Love your ADH and PSA news, Noggin!


Thanks Richard!

Saipan Paradise
Veteran Member


Date Joined Sep 2017
Total Posts : 785
   Posted 3/16/2018 2:33 AM (GMT -6)   
Welcome to the list and the thread, PolarAK — or should I call you TropicTX?
I’m just one week into my SRT and two into ADT, so I’m speaking only with limited experience. That said, here goes:
I’m working a desk job full time. No SEs, no fatigue, even late in the day. I’m expecting that to change once the T levels crash and radiation damage accumulates. I’m working out at a gym daily to fight it off. But so far, so good.
I have RT first thing in the morning, then the gym, get to the office around 10. I like having tx over and done with before work. Also, it happens to help me avoid rush hour traffic. I agree with you that traffic’s an important consideration. I’m fortunate to have a job with flexible hours. If I need to work late or on the weekend to finish a project, I will. The RT techs say if later I want to change to afternoon tx, they can accommodate me. So I’m playing it by ear.
Age 60 at dx 7/2017 biopsy G8 (4+4), 5/13 cores
RARP 8/2017 (Patel)
Post-RP path.: pT3a N0 M0, 30% tumor; EPE+, SV-
PSA 1/2016, 2.9; 4/2017, 7.2; 9/2017 (post-RARP), 0.13; 10/2017, <0.05, 1/9/2018, 0.09, 1/31/2018, 0.10, 2/9/2018, <0.05(!?), 2/23/2018, 0.08.
Eligard started 3/2/2018. SRT started 3/12/2018, 72Gy

Skypilot56
Veteran Member


Date Joined Mar 2017
Total Posts : 734
   Posted 3/16/2018 5:40 AM (GMT -6)   
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
Male 62 DX @ 60
Dad had PC
2002. Psa. .08 Enlarged Prostrate
2014. Psa. 3.8
2016. Psa. 19
3-08-17 RP Mayo, Mn
Gleason 9, pt3b, SV + 1 nerve, N-Margins 35 LN removed clear
Prostrate 45 grams
4-20-17 Incarcerated Umbilical Hernia
6-13-17 psa 0.13
7-19-17 psa 0.12 3TMRI with coil - clear
10-11-17 psa 0.16
10-12-17 Lupron
12-13-17 psa <0.10
12-18-17 SRT
2-7-18 SRT done 72gy

Hardlyrob
Regular Member


Date Joined Sep 2017
Total Posts : 119
   Posted 3/16/2018 8:55 AM (GMT -6)   
Welcome PolarAK - sorry you have to be here.

As SkyPilot said - everyone is different. I've been on ADT since December - I have hot flashes, night sweats and pain in my hands and feet. The Lupron also seems to have made my arthritis pain in my knees worse than before Lupron - an unusual effect, but not unheard of.

I just started SRT this week, so too soon to tell how I will react to the radiation. Like SP, I have flexible hours, and plan on working full time. My RT appointments are all mid afternoon, which works well for me - missing any traffic, and farily easy to schedule around them.

Best of luck to you, and check in here to let us know how you are doing.

Cheers!

Rob
5/2017 PSA 34.2 age 53
6/2017 Dx by biopsy - 9 of 14 positive; Gleason 7 (4+3) 5% to 90% cancer
8/24/2017 RARP, Dr. Canes - Lahey Burlington (MA)
4/8 lymph nodes positive, EPE, +margin 5 MM, SVI
pT3b; pN1; M0
10/24/17 PSA 0.13
12/11/17 Started 18 months of Lupron
1/18 PSA <0.1; T=31
SRT 3/14 - 5/7/18 - 39 fractions; 68.4Gy prostate; 44.5Gy to nodes

John_TX
Veteran Member


Date Joined Jan 2015
Total Posts : 1245
   Posted 3/16/2018 9:09 AM (GMT -6)   
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.
DX - 1-13-2015 (age 66) -- PSA 4.02 (9-16-2014) to 4.38 (12-5-2014)
RALP on March 2, 2015
G6 to G7(3+4) to G7(4+3)
Stage pT3aN1
12/2017 PSA < 0.1
7/31/2015 HT - six month's injection of Lupron
ART 11/2015, 33 sessions

Progressing
Regular Member


Date Joined Aug 2017
Total Posts : 283
   Posted 3/16/2018 4:52 PM (GMT -6)   
Sorry you’ve joined the group, Polar. I’m just behind you. Appreciate all the wisdom people are posting.
Questions in anticipation —
Any restrictions on types or duration of exercise?
Any foods to indulge in or tsay away from during SRT?
Alcohol?
How about going out in the sun during a summertime SRT?
Age 76, Dx at 75
Psa 7/13=8 with BPH, 9/17=20.44
7/20/17, Biopsy, 5/12 cores PCa all right side, Gleason 4+3, PNI
MRI and CT no evidence of metastases
Laparoscopic surgery MSKCC 10/31/17, left nerves spared, pathology T3aN0, G4+3, focal EPE, negative margins, no multicentricity, BPH
Continent but ED
12/14/17-psa 0.10; 1/25/18-0.11, 3/5/18 - 0.12. Scans 3/21 then SRT with 6 mos ADT
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