Experience with Lupron treatment and side effects

@Rbeck1234 

Hi Rich,

Happy to hear that you have friends and family around and your not going through this alone.  I have decided to have another Lupron shot on Thursday.  You have had more experience with pain management than I have and I hope that your upcoming appointment will offer a better option than what I am seeing.  I may be tilting at windmills,  Pray you are having a good day!

Jim

@JamesB 

went to UC Davis yesterday. They recommended a few things. Physical therapy, an injection in the affected spine area and a steroid to be tapered off. ( prednisone). 

After the hour and a half drive there, I was in so much pain I could barely walk. It was also a wake up call as to how weak I am. I think therapy will be good for me. My legs and arms are pretty atrophied. 

I hope you are doing ok today. I know this is a life of good and bad days. 

Thats all for now, still recovering from yesterday. 

Rich

@Rbeck1234 

Hi Rich,  I am off to get another Lupron shot today.  I hate to say it, but I have tried The prednisone (without any success).  My ex is a physical therapist and while it helped the exertion became more than I could do any longer.  I hope that you have a good day of recovering and that tomorrow will bring you better energy.  As I mentioned I will be moving to Grass Valley at the end of the month.  If there is anything I can do to help you please let me know.  I am blessed with a number of wonderful friends and family. 

My prayers,  Jim 

@JamesB 

hi Jim,    I’m not feeling so hot today. Thought I’d reach out to someone who knows how bad the body feels with aching bones , pain and zero energy. 

I have thought about if I can do PT. I really doubt it, but will give it a shot. If nothing else it gets me out of the house. 

So here is hoping your day is better than mine. 

@Rbeck1234 Hi Rich,

I totally understand what a bad day can do to for your.  I have days when I don’t even want anyone around me.  I have found the only strength I have on those days is to meditate and pray!  I don’t know if you have any type of religious beliefs, but as a Christian I turn to my faith.  I have spent the last two or three days barely moving so you definitely have my deep sympathies and prayers🙏   All we can do is hang in there and look forward to the good days.  I hope that you will have one tomorrow!

my warmest,

Jim

Lupron is tough. I really don’t think others know just how draining it is.

i had days like both of you are talking about. The only thing I felt like doing was sleeping and then it wasn’t a peaceful sleep because of the aches and pains. As bad as they were I still managed to walk. I couldn’t run and didn’t feel like weight lifting, but I could walk. Some days no distance at all, and then others a few miles.

i feel for you both. Try to stay as mobile as you can by walking, even though I know you really don’t want to. 
my thoughts are with you both.

ray

@Raymond 

thanks Raymond. My Dr has stopped my Lupron treatment because of the devastating effects. He said I won’t live as long as my PSA will rise and cancer will grow. I will be put back on Lupron when levels rise. It has been 3 weeks since my last shot, and still waiting to feel a bit better. The thinking is that some quality of life is better than none. 

I am going to start physical therapy soon to hopefully rebuild my atrophied muscles. I pray I can do it. 

Again, thanks for your input. I don’t know if everyone has these devastating effects, but comforting somehow that others like us do. 

Rich

@Raymond 

Good morning Ray,  I keep trying to stay mobile.  The Lupron sucks and I am now starting my 3rd year.  Bone tumors in the pelvis and spine together with a hip replacement two years ago have made it a little more challenging.  Hard to believe I was skiing just two years ago.  Over the last 10 years of this journey have been on Lupron before each of my treatments, Gone through IMRT radiation, two seed procedures and a cryo ablation and Turpin surgery.  Still walking even if it’s only a quarter mile on most days.  Faith, prayer and meditation do wonders!  My ex is a PT and classic Pilates instructor.  They have a saying “movement heals” and that’s true!  My prayers and God’s blessings to you and keep fighting!

warmest wishes,  Jum

@Rbeck1234 

hi Rich,  just wanted to check in and see how you were feeling!  I have finished my move to Grass Valley and survived.  Hoping that today is one of those good days for you!  Interested to see if you were able to do any physical therapy and if so did it help?  All my best!

jim

@JamesB 

hi Jim,

just had my Dr. visit a few days ago. My PSA was 0.01!!!!!! That is even lower than last month, and no Lupron shot!  My PT hasn’t started yet. He increased my calcium and that helped a bit. I still have really bad days and some not too bad. Today is one of the bad ones. Been in bed most of the day and just ache all over. 

I get a bit of relief from the pain meds. It that true for you too? I mean, not just the pain of the cancer but the aches of the therapy side effects. 

I did get an Exgeva shot for bone strength, and the effects were like the Lupron. I read up on it and found out it can deplete calcium in the body. I added a supplement and my Dr. said I should have been taking it all along. He ordered some from the pharmacy plus vitamin D. Said it should help. Do you take any supplements that help? 

Welcome to the neighborhood. Do you have your medical set up here yet? I wish you all the best. 

Rich