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ADT and SRT Journey Part 2

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Posted 3/28/2018 1:00 PM (GMT 0)

Zzarth said...
BOY, did i get sick in Barcelona... I havent been that sick in years.

Anyone else get sick after treatment?


Yeah, but I only get sick after my wife's treatments!

A year ago at her final chemo - the day she rang the bell, photo op with the nurses ect, I had a turkey sandwich from the lunch cart... the one they bring around for the patients in all-day chemo. Apparently it had been out of refrigeration too long. I was sick as a dog all weekend, and was doubting if I'd be able to drive her back to the hospital that Monday for her spinal infusion. I lost 8 lbs that weekend, the hard way.

This past Monday I drove her back to the hospital for her one year follow up CT, didn't eat at he hospital this time (whew!) but apparently ate something disagreeable... had dry heaves and diarrhea all that night and in bed all day yesterday with my head over a bucket. Lost 7 lbs this time.

Before too long all the Lupron weight will be gone.
Posted 3/28/2018 1:17 PM (GMT 0)

Saipan Paradise said...
But I notice your T level only recently dropped below 20. Maybe there would be some benefit from keeping it there for awhile? Perhaps someone more knowledgeable can speak to that.

Yes, I had the same thought about T level and length of HT.

MD's never figured out why T level wasn't getting to <20 until 12/17.

Study showing 18 months HT with initial RT for high risk patients may be as good as 2-3 years - but no studies showing optimal HT duration with SRT. Those studies will publish in 2020 - too late for my decision.

Still deciding which road to take - these HT SE's, low energy, hot flashes, muscle aches and stiffness are terrible.

Bobby Mac
Posted 3/28/2018 1:31 PM (GMT 0)
The lingering side effects are terrible. Mine have been constant muscle and joint pain, hot flashes, fatigue, and weight gain (around 25 lbs.). A bad back is helping the weight gain since its difficult to get any exercise. I’m scheduled for 3 more shots, hopefully ending In October. The brachytherapy and SBRT were nothing compared to this.
Posted 3/28/2018 1:38 PM (GMT 0)

garyi said...

SP....what are you doing with ADT? Eligard plus Casodex for six months???


Casodex only 1 month (just finished it). Was never going to be more than that, none of the ROs I consulted wanted more, Biagioli wasn’t going to put me on it at all.

Eligard: Dr Ko wants me on it a minimum of 9 months, preferably 12. I’ve told him so far I can only commit to 6. We’ve agreed to disagree, we’ll revisit the issue when the 6-month mark approaches.
Posted 3/28/2018 1:46 PM (GMT 0)

RobLee said...
...I had a turkey sandwich from the lunch cart... the one they bring around for the patients in all-day chemo. Apparently it had been out of refrigeration too long. I was sick as a dog all weekend, and was doubting if I'd be able to drive her back to the hospital that Monday for her spinal infusion. I lost 8 lbs that weekend, the hard way.....


I had a similar experience the last time we went to MDA for my last follow-up. I ate something for lunch and apparently there were some nasty bacteria (or whatever) in one of the ingredients (it was a make you own sandwich) I used. I got sick as a dog early evening, went to bed early and about an hour later tossed my cookies in bed. Got it all over my face and chest and the bed. Housekeeping came and changed the sheets, pillow cases, etc. What a trip.
Posted 3/28/2018 3:20 PM (GMT 0)
How long does the se last after the 3 month shot of lup...after a 1 month then a 3 month ,,,,,,I had 35 treatments of RT started in dec ended in feb,,,following psa rise following RP in april 2017,,,,,
Posted 3/29/2018 12:46 AM (GMT 0)
SP, you were talking about the lymphedema you had for a while what were your symptoms?

Larry
Posted 3/29/2018 1:20 AM (GMT 0)

Skypilot56 said...
SP, you were talking about the lymphedema you had for a while what were your symptoms?
Larry


Lymphocele, not lymphedema. It’s a collection of lymph fluid in the space a lymph node used to occupy. When it was first picked up on ultrasound at 6 weeks post-RP, I was asymptomatic. Soon, tho, I developed severe groin and hip pain, like from a bad groin pull or hip pointer, only it didn’t improve with rest, seemed to get worse and worse. I was walking with a cane for awhile. After about 5-6 weeks, it started to heal on its own. Totally fine now. Nothing showed up on 3T MRI five months post-RP.
Most lymphoceles resolve on their own, as mine did. The trouble is if they get infected. Then they have to be surgically drained, and patients are typically put on IV antibiotics for a couple days. Long story short, they’re not really dangerous, just a crappy setback during recovery.
(Posted from world-famous Won Pat International Airport in Guam.)

Post Edited (Saipan Paradise) : 3/28/2018 7:31:21 PM (GMT-6)

Posted 3/29/2018 1:46 AM (GMT 0)
Ok I'm kinda wondering if I don't have some lymphedema My knees are kinda swelling up and my upper legs are definitely getting bigger my waist size hasn't changed but having trouble getting my pants legs over my thighs and my underwear band on the bottom are really tight! I have been doing quite a bit of reading on this and understand this can be a side effect of surgery I had 35 lymph nodes removed also it can be a side effect of radiation? Sounds like a lot of women have trouble after Breast Radiation. Anybody experience this or have any knowledge of?

Larry
Posted 4/1/2018 12:41 PM (GMT 0)
Good Morning everyone HAPPY EASTER. If anyone is suffering hot flashes this morning let me know I'll send some of this 0 degree cold your way! LOL

Larry
Posted 4/1/2018 1:11 PM (GMT 0)
Happy Easter to you and your family too Larry!

Mike
Posted 4/1/2018 3:12 PM (GMT 0)
Happy Easter everyone, and chag sameach to others... Festivus anyone?

Today marks the return of an annual event here, when the snowbirds return to the north.

Another exodus, and life returns to normal... like shopping and dining without massive crowds.
Posted 4/1/2018 3:46 PM (GMT 0)

RobLee said...


Today marks the return of an annual event here, when the snowbirds return to the north.

Another exodus, and life returns to normal... like shopping and dining without massive crowds.

As I told Prato, happiness in Florida is a yankee going home, with a Canadian under each arm. smilewinkgrin

Good luck with your pending 00 PSA, and getting your AUS tightened up, Rob!
Posted 4/2/2018 12:47 PM (GMT 0)
http://riskcalc.org/ProstateCancerAfterRadicalProstatectomyNew/ Good Morning Everyone hope you had a good weekend as you get ready for another week of radiation or work or just hanging out! This was a link that TA had just posted on 3-27-18 from Cleveland Clinic not sure I like it very much!!! But I don't believe in those things anyway spell checker doesn't recognize the word nomogram so neither am I! turn

Larry

ps sorry guys don't know how to highlight it to be a link you clik on
Posted 4/2/2018 7:59 PM (GMT 0)
riskcalc.org/ProstateCancerAfterRadicalProstatectomyNew/
Thanks, Larry. Use the URL button above the reply box to create links.
The results seem in keeping with expectations based on studies and our collective anecdotal experience.
Not sure it really helps in decision making. I mean, if you have recurrent or persistent PSA post-RP, you’re going to do RT, so what’s the point?
I guess one might use it to help decide whether to add ADT. Not surprisingly, outcomes seem about 10 percent better with ADT vs. RT alone. But it’s no help in deciding how long to stay on ADT.
Interesting that outcomes are only marginally better if you start RT at 0.1 vs. 0.2 (1 or 2 percentage points).
Surprised that recurrence vs. persistence isn’t a variable. Same for length of time before recurrence.
To me, this nomogram is only slightly better than a nothingburger.
Posted 4/2/2018 8:08 PM (GMT 0)

Saipan Paradise said...
riskcalc.org/ProstateCancerAfterRadicalProstatectomyNew/
Thanks, Larry. Use the URL button above the reply box to create links.
The results seem in keeping with expectations based on studies and our collective anecdotal experience.
Not sure it really helps in decision making. I mean, if you have recurrent or persistent PSA post-RP, you’re going to do RT, so what’s the point?
I guess one might use it to help decide whether to add ADT. Not surprisingly, outcomes seem about 10 percent better with ADT vs. RT alone. But it’s no help in deciding how long to stay on ADT.
Interesting that outcomes are only marginally better if you start RT at 0.1 vs. 0.2 (1 or 2 percentage points).
Surprised that recurrence vs. persistence isn’t a variable. Same for length of time before recurrence.
To me, this nomogram is only slightly better than a nothingburger.


Rich, needless to say, this (the bolded statement) jumped out at me as well.
Posted 4/2/2018 9:19 PM (GMT 0)

Pratoman said...

Rich, needless to say, this (the bolded statement) jumped out at me as well.

Welcome back from your hiatus, Richard.

While I know well, the pull for absolute answers that don't really exist is most frustrating. I had a senior physician/researcher tell me recently that "ALL medical science is just best educated guess at that moment".

Seems fair to me.....
Posted 4/5/2018 4:44 AM (GMT 0)
Just kickin' the thread forward. Not much to report.
Today was #18 of 40, will hit the halfway mark Monday.
Rescheduled my Monday morning zapping from 8:30 to 9:30 so I can watch the final round of the Masters, which airs from 4am-9am Monday here in Guam.
Into my second month on Eligard, some hot flashes but not too bad so far.
Posted 4/5/2018 2:07 PM (GMT 0)
Bone scan clear, next step MRI, then on to ADT and SRT. Not sure if stable psa between 18 and 21-1/2 weeks means anything.
This process is easier with all the postings and musings from those of you ahead of me on the road.
Posted 4/5/2018 2:38 PM (GMT 0)
Today is zapping #17 of 39.

Lots of guys said RT is a sprint - seems more like a forced march to me.

Lupron side effects seem to be a bit better, or I'm getting better at ignoring them.

Hang in there guys - we will get through this.

Rob
Posted 4/5/2018 4:59 PM (GMT 0)
Today was #9 for me...only 30 more to go.

Surgery, then ADT, followed by RT. No walk in the park, but not falling off a bridge either. yeah
Posted 4/5/2018 9:05 PM (GMT 0)
Hey just curious - what machine are y'all getting zapped with?

Mine is a Varian Truebeam - the RO chose it for image quality and size of the image for targeting. List price a cool $2.7 million, installed in December 2016.

Rob
Posted 4/5/2018 9:47 PM (GMT 0)
Varian Edge. The newest Varian High Energy Linear Accelerator.

List price is cheap when compared to the maintenance fees. RO's, just like RALP surgeons, have a lot of time and $ invested in these amazing machines.

https://www.youtube.com/watch?v=ulIuBNIJRGY
Posted 4/5/2018 10:27 PM (GMT 0)
As some of our brothers obsess about the calibration of PSA assays, how about the calibration of these 4 million dollar Varians? Don't make a move on the table, hope the lasers have lined up perfectly, trust that your bladder is full and your colon is empty, pray that the technician hits you with her best shot, and that those pesky little devil cancer cells haven't left the barn already.

How it works:

https://www.youtube.com/watch?v=jbCfQRzocjI
Posted 4/5/2018 11:27 PM (GMT 0)
Varian TrueBeam video
Thanks for posting the video, Gary!
I'm on the TrueBeam, installed 2015.
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