Experience with Lupron treatment and side effects

@Rbeck1234 

I have taken a 2 month break from the Lupron and unfortunately have not had much more than marginal improvement from the pain issues.  I have gone to several different urologists to see if they had any other ideas.  The general consensus is that the multiple procedures that I have been through over the last 10 years has done such damage to my prostate and surrounding tissues that there really isn’t anything more that can be done to improve the damage.  That just leaves managing the PSA levels and pain.  Taking it one day at a time and grateful for the blessings of the better days!  May God bless you on your path!  James

@JamesB 

i know what you mean about damage. I was treated with beam radiation and seed implants. All that radiation did damage. There are no surgical options for sure. 

So, my psa numbers will guide when get the Lupron.  Just wish there was something other than hormone therapy. 

@Rbeck1234  

Sounds like my regimen.  I had the IMRT. Seeds twice and then the head of urology at Loma Linda did a complete cryo of my prostate and seminal vesicles.  Throw in a two surgery.  My numbers a month ago were 0.23.  I guess the good news is that the Lupron has worked for the last two years.  Bad news is the quality of life.  I wish you all the best in your journey🙏

Jim

@JamesB 

i was also given a testosterone blocker called Zytiga a few months ago. The effects were just devastating. My Dr. pulled me off of it. My PSA for the last two months were 0.02!!! The treatment works, we just need some quality of life and no pain! 

My bone cancer is at S1 at the base of my spine  sitting isn’t fun  I go see pain management at the university in 10 days  hope they can help  

Rich

@Rbeck1234 

Rich,  I have 8 tumors.  Hips, tailbone, mid spine, ribs and base of my neck.  I know what you mean about sitting.  It truly is a pain in the....  As for pain management I have been on Norco and Soma for the last year and a half.  So far all can say is while it helps, it hasn’t given the type of relief that allows me to get out and return to an active life style.  Always have been very active, golf, skiing, diving etc.  Would love to hear what your pain management Dr.s have to say.  I have tried just about everything.  I pray that they have something that works for you!!

Jim

@JamesB 

well Jim, we are a real mess aren’t we. I can so relate to what you’re going through. 

I live alone, ( my wife passed away some years ago) and it seems each day gets a bit harder. I so dread that day I won’t be able to care for myself. 

I spend a lot of time doing physics research. I got a degree a few years ago. ( but wasn’t my vocation, I was an electronic engineer). It keeps my mind active. 

Anyway, just saying hi. Hope this a good day for you. 

Rich

pS. I see pain management at UC Davis on the 13th. Will let you know what they say. 

@Rbeck1234 

Good morning Rich, 

I hope that you have a blessed day today.  Living alone can be a huge challenge in itself!  I hope you have some type of support system!  Isolation has been a challenge for me in the past.  You mentioned UC Davis.  I am moving back up north at the end of this month to Nevada City.  My kids, grandchildren and great grandchildren are all there.  I see my oncologist today and am still trying to figure out if I want to continue with another Lupron shot.  I thank you for your continued dialogue and send you my prayers!  

Jim 

@JamesB good day Jim,

i. Wanted to mention another part of my treatment. Along with the Lupron shots, I also get a bone strengthening one called Xgeva. On my last visit I received only the bone shot. I fell into a bad bone aching episode.  I re-read the side effects and saw that it can deplete the calcium in your body. I took a supplement of calcium and felt a bit better!!  So do you also get a shot like this? Calcium may help. 

Have a blessed day,

Rich

@Rbeck1234 

Good afternoon Rich,

 I have just been on the Lupron.  The irony of all of this is that if you were to look at my bloodwork you would think that I was a truly healthy person.  It is just the pain that has me feeling like just giving up.  I am blessed with a wonderful support group and I know from our conversation that you live alone and I can only hope that you have friends around you that are there to help!  I am praying for you.  Are you currently taking anything for your pain?  I know you have an appointment soon.  Just wanted to ask, because I have always had a very high tolerance for pain.  Once you start on that path it opens a whole new level of challenges.

Blessings to you my brother,

Jim

@JamesB 

yes, I am currently on Oxycodone. I am aware of opioid addiction. I had a spinal fusion that left a lot of nerve damage. I was on methadone for 10 years. Not looking forward to anything like that. Kicking it was not fun. 

I do have family and friends here. But they somehow don’t do housework!  

Hope you have one of those good days. 

Rich