ADT and SRT Journey

Dr. Anthony D'Amato at Daner-Farber said NO anti-oxidants at all, and to be very judicious taking ANY supplements.

"He knows a thing or two because he's seen a thing or two."

Good Morning Gang! Found out Monday evening that 5 of us guys here at the Hope Lodge all had gotten sick after treatment on Fri. A couple of the guys were really sick finally just able to eat something yesterday. What is interesting is that us five guys all got the normal radiation the other two guys that got the proton beam didn't get sick so not sure if we picked up the bug in the radiation waiting room or if we got it here at the Hope Lodge? right now Mayo is experiencing a respiratory flu bug going around so that adds into the equation also. OH well the joys of being sick hey? How's everybody's week going? They rang the bell 12 times yesterday for radiation completion. I see a lot of new guys on here asking about treatment options and just want to pass on to them there is no one clear answer. In our group of 7 guys here that have prostate cancer each one is a little different and the treatments are different some with chemo, some just with SRT some just ADT some with both like me some guys with only 20 treatments and some like me with 37 so even tho we have went thru the 1st battle and had partial victory now we have to take on the 2nd battle and hope that we and our team have chosen the best weapons!! With the anticipation that this will be our final battle and we are going to win once and for all HEY??!!!!

Larry

Right on Larry - we WILL beat this darn thing.

Hope you're feeling better.

Rob

Hey all -- today was my 19th treatment... I'm 1/2 through my 39!

I'm leaking more than before starting treatment... gained a lot of weight.. but motivated to get the next 20 out of the way!!!

Zzarth

A little late to the party. Actually, didn't know this party was going on. Let's see if I qualify for this, yet another group, i've recently joined. GS 9 crew, Brachy boys, post toasties and now ADT and SRT. Dx in Dec. 2016 and started Lupron April 2017. 3 month program for at least 1 1/2 years. LDR brachy in July 2017 and SBRT in August 2017.
The major issues or SE's I have with the lupron are #1....fatigue. This started around my 3 rd shot and continues. Seems like it is getting worse. #2 and 3.....hot flashes and insomnia. These may just be tied together since after a hot flash while,sleeping, Imfind it difficult to get back to sleep. Next is weight gain, followed by some breast tenderness which just started about a month ago.
Issues from SBRT which was completed in 5 fractions are possible radiation proctitis. I spend too much time in the bathroom. Will give it some more time to see if things begin to level out. Since the radiation was only 5 days, it wans't a physical drain for me. The longer treatments must be very tiring.
Right now, visit with MO and RO every 3 months for blood draw, lupron shot and office visit.
Currently, my lupron induced PSA has been <0.05 since end of radiation. Lupron is scheduled to end in October 2018. Then I guess its sit and wait a year or more to see if all the effort paid off.
To be honest, the SE's from the ADT are bearable. Hopefully they reverse at the end of treatment, but for now, I just try to ignore them best I can.

Almost forgot. If there's a triple play club, I belong to that also. So many clubs, so little time.

I love you guys, but there's only one more club I want to join.

The 'PCa is in my rear view mirror' club!

Hi Gang and a big welcome to our new members! Week 4 done today and halfway thru for me.. Looking back can't believe how fast it has gone. So far can't really complain to bad about SE's been extra tired this week and the insomnia has been much worse than usual but I think most of that is a result of the craph we picked up and passed around here at the hope lodge one of the guys ended up in the hospital overnite because his turned into pneumonia. I'm feeling pretty good thinking after treatment today I'll go to the gym and work on this lupron belly!! LOL. On a serious note everybody here in the hope lodge and in our cancer crowd in the Mayo system here are all pretty much in a aggressive high stage cancer prognosis but the positive attitude that is radiated is sometimes very humbling. We have a gal here that is the longest survivor of her particular cancer everyone 21 days she has to have 5 days treatment to listen to her you would think she is just going to like a meeting or something when you know she's getting the craph beat out of her with the chemo. I certainly have grown a respect for all the different kinds of cancer and the work the American Cancer Society does for people rich and poor from every race and nationality. Can't say enough good about them! Well gotta go for treatment so Keep your head up and your smile big and have a great weekend catch you guys next week!!

Larry

Good Morning Gang! Hope everyone had a great weekend!! If you were a VIKING fan your sure did don't watch much football but did watch the last two minutes even if you don't like football that much it was pretty exciting sure took everybody's mind off their cancer here at the hope lodge for a few hours last nite!! Start of week 5 for me and a couple other guys here so far hasn't been too bad for me which I'm very thankful for. We have a gentlemen here going thru both radiation and chemo at the same time having a pretty rough time so I'm thankful I only have radiation. Couple more days of cold weather and then gonna warm up that will be nice. Ok everybody have a great day and week catch ya later!!

Larry

Hi Scar, sorry you had to join our group but welcome to our little group. I can't give you any advice on your liver questions but we have some real intelligent guys here that can offer their expertise. They should be coming along shortly. My only advice from my personal experience is that if your husband is able to walk you should encourage him to do a lot of it as it Helps a lot in the incontinence control. Wishing you the very best in your journey. Not sure how old your husband is you might want to throw that in your signature.

Larry

Oops sorry didn't realize that. Garyi I'm wondering how many guys get their liver and testosterone levels checked when going on ADT and SRT I honestly have to say we have never talked about it in our team meetings? maybe because they want me on it at least 2 yrs? Not sure will have to bring it up last week got to look at the images where they are radiating me pretty cool.

Larry

Hi Scar1919...your husband's situation seems close to mine although I didn't have the bladder neck invasion. But yes on Persistent PSA. Although my RO said it would be worthless to do bone or body scans because at that PSA level nothing would show up. Makes me wonder why your doc would think otherwise. And the ED is going to be an issue...really kicked in for me after the Lupron shot.

A lot of this has to do with expectations. Like many I read the horror stories about ADT. But given the evidence seems pretty clear- better results for SRT+ADT- I jumped in with no regrets. As of now, some 6+ weeks since the Lupron shot, I'm very pleased. I've had very bearable hot flashes and ED/lack of libido. so far so good....

I took a quick look at this thread, and wish all of you the best of luck. I went through SRT without ADT and am just now (almost five years later) starting to see my PSA become once again detecatable. At that time there was not much evidence for or against ADT with SRT, although now there is some evidence that it is effective for certain cases.

FWIW, my SRT was a piece of cake compared with my surgery. Other than making my surgery-related ED worse, it gave me no SEs and I recovered fully with no long term problems.

Be sure to have your bladder full when getting nuked