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ADT and SRT Journey Part 6

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Posted 3/2/2019 3:23 PM (GMT 0)
Trailguy, thanks for that post, probably the most comprehensive explanation if ADT side effects I’ve seen.

So maybe the question becomes, what can we do to stimulate the hypothalamus section of the brain. Both during, and after ADT.
Posted 3/2/2019 4:07 PM (GMT 0)
Here are some links for information (can’t vouch for reliability) on stimulating the hypothalamus...

https://draxe.com/hypothalamus-function/

https://www.livestrong.com/article/480023-foods-to-help-the-hypothalamus/
Posted 3/2/2019 5:24 PM (GMT 0)
Hey trailguy - Thanks for that list of side effects; it's no wonder we have so much trouble being on Lupron for a long time. That's a formidable spectrum of Bad Things!

To clarify, perhaps there was a typo in your post, but the topic isn't a "testosterone patch". Rather, the study was investigating the idea of adding back some estrogen, via estradiol patches. Intention is to address some of the unpleasant issues caused by loss of testosterone. I don't think anyone is claiming that the estradiol patches would completely offset all issues caused by Lupron.

That intimidating list of side effects could also support bilateral orchiectomy for those considering permanent ADT, when that's appropriate. Studies have indicated that the surgical "hormone therapy" has fewer side effects than the medical versions. Daunting to consider, but sometimes we only have unattractive options....
Posted 3/2/2019 8:37 PM (GMT 0)
Trail Guy thnx for that great report!! Now I have proof to show the wife why I am so weird and in the LUPRON fog!! LOL Wonder how many guys would have second thots if they saw this report before starting ADT. probably a good thing they don't.

Larry
Posted 3/2/2019 11:59 PM (GMT 0)

Skypilot56 said...
Trail Guy thnx for that great report!! Now I have proof to show the wife why I am so weird and in the LUPRON fog!! LOL Wonder how many guys would have second thots if they saw this report before starting ADT. probably a good thing they don't.

Larry

I've related this before, but I'll share it again:

I had read about ADT's side effects before I started on it. My diagnosis, doctor visits, scans, discussions, planning, all led up to the morning I was to go get the first shot. Sitting at home, my wife had left for the day already, and I was sitting on our couch. Weirdly, I was unable to move. Just, sitting there. The time I was to be AT Vanderbilt, 40 minutes away, came. And I'm still sitting on the couch, in some sort of mental paralysis. "Gotta go. Can't go. Gotta go. Don't want to go. Gotta go. Really? This can't be real. Gotta go...", around, and around, and around.

Finally, I'm not sure what snapped, but I sort of "came to" in some way. I called the uro's office, asked if it was too late for me to come, as I'd been "delayed". They said no problem as long as I got there within the next hour. I went, received the (painless) shot, and so down the rabbit hole. (Which, even though I didn't know it that day, was essentially the end of my sexual life. Cancer and its treatments can cost us a dearly, indeed.)

So yeah, being aware of the side effects can make someone hesitate. Oh... yeah....
Posted 3/7/2019 2:02 AM (GMT 0)
Sure am glad I didn't throw away my Depends briefs decided to do some painting that the wife had asked me to do and figured i better get it done before my back surgery. I was kinda painting in a weird situation and became totally incontinent couldn't believe it haven't had that problem for a long time. Kinda humbles a guy.

Larry
Posted 3/7/2019 1:07 PM (GMT 0)
Thanks for those links, Prato, I have added them to my library. smile

Sometimes my sense of humor leaks through my posting. While on "ADT", I initially only focused on testosterone, but it didn't add up to me. So I researched what leuprolide chemo actually did.

I understand the docs not wanting us to know much about this before we sign up, many guys flake right out along the way in fear of the bad stuff already. So they emphasize the potential benefits and often minimize or....'forget' to mention (permanent life-altering) details.

Like Red suggested, I can see being in that place where the surgical option is the preferable option. The loss of testosterone can be reversed right away with a testosterone patch, whereas the collateral damage from long term leuprolide chemo is irreversible as well as very expensive.
Posted 3/7/2019 3:57 PM (GMT 0)
I never knew about all of the "other" side effects of ADT, and honestly, i wonder, if i had realized there's more to it than just reduced t for a while, if i would have chosen to add it to my treatment. I had a choice, being low intermediate risk. I went with my RO's reco, based on his stellar reputation, for both skill and caring.
I think he may not have discussed at length the side effects, because like most RO's he hasn't been through it. Just hypostulating. To his credit he did say, "be aware, that for a period of time, your quality of life will suffer"

It didnt suffer terribly, but i didnt get away scott free either.
Posted 3/9/2019 5:01 PM (GMT 0)
I'm about a third of the way through my second 6 month lupron shot and I have decided this will be the last one for now. Hopefully there won't be a need for more.
Posted 3/10/2019 12:22 PM (GMT 0)
Gosh two yrs have come and gone since I had surgery. The time has gone by fast that's for sure but the Lupron SE's seem to be dragging! After reading about guys that have been on it for years I feel fortunate that hopefully two yrs will be it for me. I spent 2 hrs with a guy yesterday that had surgery 4yrs ago his psa is now at 3.8 he started Lupron 6 months ago and starts Radiation in a couple of wks. He had a pet scan with axium at Univ. of MN that didn't show nothing which was good. He is a fitness junkie and at 75 yrs old is a phenomenal athelete. He is feeling more tired than usual and was wondering if that was from the lupron. I joked with him and said what do you expect at your age but then told him it probably was se's from lupron and when he gets his psa check when he starts radiation it will probably be pretty low maybe even undetectable which means the lupron is working. I go for my laminectomy surgery a week from tuesday. Have to take it pretty easy for a while so hoping I can do lots of walking to help keep my weight under control. At times wish I didn't like food so much but hey don't drink, don't smoke, no hanky panky, so a guy has to have some kind of vice hey? LOL Hey the good news is we hit 34 degrees yesterday first time since Jan 4th now gotta go out and shovel snow so everybody have a great day!!

Larry
Posted 3/10/2019 2:13 PM (GMT 0)
Good luck with the surgery Larry. A week without exercise won’t hurt you. I’m a good example of that 🤣
Posted 3/13/2019 12:25 PM (GMT 0)
Just wanted to update the thread as there are a couple of new guys that might be going down this journey and hopefully from reading about our experiences they might pick up some ideas and mostly that we can provide some sense of calmness and comfort as they start in seeing that we all were in their shoes and that yes things are not always the easiest and sometimes the side effects are not always the most pleasant but we are still here to enjoy our family and friends and a lot of us are undetectable right now. Can't ask for much more for us guys that had not so good path reports hey?

Larry
Posted 3/13/2019 4:46 PM (GMT 0)
Hello All,
I haven't been around for awhile and am glad that this thread is still going. My husband is in his 7th week of radiation now. He had surgery July 26 (G9 with 1 lymph node) and began ADT in September. He had Firmagon, then Lupron. He is getting his next Lupron shot in April. It has been hard on him. He IS very tired but is working full time as a retail manager. He works from 9:30 am-8:30 PM and takes a "break" around lunch time to drive to radiation. It's about 35 minutes by highway from his work to the urology center. I drive on my days off during the week to give him a little bit less stress from driving! I am very grateful for the time we have together in the car and the time when we go to appointments. I'm grateful he is here with me and that he is so resilient smile We have made friends with several people in the radiation waiting area, of course. It's kind of a grind but we're getting through it. We're hoping for a "cure" and will have to wait and see what happens. Of course things have changed in many ways for us but you adapt and move forward. Coming back here is always informative and helpful--I really appreciate everyone here!

Skypilot-- Thanks for your comments! Please take care of your back! Hope and gratitude are so important on this path.
Kittytalk
Posted 3/13/2019 10:03 PM (GMT 0)
You and your husband are brave, kittytalk. What a grind for him. Thankfully, his RT is almost done. Wishing you both all the best going forward after treatment.
SP.
Posted 3/14/2019 3:53 PM (GMT 0)

kittytalk371 said...
....Of course things have changed in many ways for us but you adapt and move forward.

That is the KEY, Kitty. Glad you guys are almost done with RT, and it sounds like you're in a good place. Keep on truckin' on!
Posted 3/15/2019 1:01 AM (GMT 0)
Hi Kitty yep hubby almost done with rt before you know it you will be ringing the bell. Hope the PSA stays undetectable and the SE's very minor. Good to hear from you

Larry
Posted 3/20/2019 11:36 PM (GMT 0)
Hi guys and gals! As many of you know I had laminectomy surgery yesterday at the Mayo Clinic the surgeon wasn’t giving me very good odds as he thot some of my pain was coming from my radiation treatment last winter. Well great news! When he got in there the mri and x-rays didn’t show everything so he found that my nerves were completely constricted and that if I didn’t have the surgery it would have just kept crippling me until I wouln’t have been able to walk. You know we have lots of discussions on surgery and other treatments concerning PCA and boy did I have lots of doubts about this surgery as he only gave me a 40% chance of success. I almost canceled a couple of times but the pins and needles and pain in my right leg kept getting worse so I figured even 40% was worth it. The surgeon told me this morning before he released me that he was glad I stayed with my decision as when I woke up in the recovery room I-had no pain, needles or pins in my right leg and he considered the surgery a complete success!! I will tell you that the incision pain is quite bad but that will slowly go away I have to take it easy for 3 months but that won’t be to bad. I joke I’ll have the life of my dog sleep and eat. Well maybe better not do to much eating will add more to the 25 lbs I have gained from Lupron! LOL
Posted 3/20/2019 11:58 PM (GMT 0)
Great to hear! I feel confident for a good long term outcome.
Posted 3/21/2019 12:27 AM (GMT 0)
Great news SkyPilot. Take it easy and we are hoping for a great recovery!
Posted 3/21/2019 12:35 AM (GMT 0)
Hurrah, Larry! Thanks for sharing. Take it easy, now.
Posted 3/21/2019 8:29 AM (GMT 0)
Awesome news Larry. You deserve some much needed relief.
Posted 3/21/2019 2:54 PM (GMT 0)
Nice Larry...time to take a break, I think.
Posted 3/21/2019 8:35 PM (GMT 0)
Great news Larry! Here's hoping that this takes care of your condition for good!

I should mention that my wife was scheduled for a laminectomy, but a biopsy performed just before determined that her spinal degeneration had been caused by primary bone lymphoma. A few months of chemo took care of it and her vertebrae began to grow back... no laminectomy. We're so glad that we acted when we did and not a month later.

Good luck in your recovery. You get a free pass just in time for yard work season.
Posted 3/21/2019 9:41 PM (GMT 0)
Thanks Guys, Had to make it into a two day trip to get home couldn't stand riding in car more than an hr so we stopped and stayed over after two hrs and finished coming home today. Interesting how the human body is all connected I had been having quite a bit of pain in my right shoulder in the muscle area that went away as soon as I had the surgery what a great feeling to get rid of pain!!

Larry
Posted 3/27/2019 9:17 PM (GMT 0)
Crew--
So I'm about 1 month past ADT -- my last Eligard shot expired end of February -- and the past week or so I've been hit with serious hot flashes and fatigue (beyond the usual fatigue from my sleep apnea, Gary;)). Anyone else coming off ADT experienced an increase of symptoms? I won't get my T retested till May, but I can't imagine it's recovered much if at all yet.
Just curious. I'll ride it out.
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