Post ADT treatment

[Dreamweaverman]

Hey Fellas, Happy Holidays, I havent' been on here in a while. I am coming up on the 12th month of my ADT treatment. I have decided not to do additional 6 onths as the side effects have finally wore me down. the hot flashes were bearable but some of the others have worn me down. Fatigue, weight gain of about 15lbs, swelling hands (sometimes sharp nerve pain i left hand) persist to the point of not being able to make a fist. But overall it wasn't as bad as I imagined. However now that I am no longer taking treatment, I am wondering how long it will take for testosterone to return and if anyone has taken supplements to boast testosterone level. My doctor said it could take months even a year to return to normal. I am anxious that I might have to continue to bear the side effects for another 6months or year even. I really miss having energy and a libido. I am simultaneously feeling grateful I was able to receive all the treatments to recover from having PC, but also a little down about the cost it has been to my body and mental well being. I welcome any feedback.

[MJCA]

Having had my first round of Lupron for 2 years and 3 subsequent rounds at one year each.... I hear ya. But, the alternative is much worse. I would suggest consulting with your doctor before discontinuing/changing your treatment.

Hugs,

Mark

[Dreamweaverman in reply to MJCA]

Thanks for reply Mark. Doctor told me 8 months minimum and 2 years maximum. But I’m concerned with the much worst comment...lol.

What do you mean? Have you heard of cases of stopping? I had surgery, radiation and a year of Adt. Did you have similar treatments and was advised to stay on Adt? Eager to know. Thanks again and hope you are having a good holiday season

[MJCA in reply to Dreamweaverman]

Hi. My PC was not encapsulated, so surgery was not an option. There are cases of ADT on for a period then off. Since the efficacy of Lupron is nil for me, I am now on Lupron and Erleada. The side effects are much worse than just Lupron alone.

[Dreamweaverman in reply to MJCA]

Hi MJ, Thanks for response and sharing your experience. i definitely helps to hear about the journey of others on the PC recovery path.

[jimreilly]

sorry, no feedback, but continued good wishes and good luck getting that libido back, it's a good thing to have!

[spencoid2]

I had ADT for a little over a year prior to and during radiation treatment. I got all the side effects and it was pretty awful but I knew it was going to end so... I am now in biochemical failure mode and will probably have to start on ADT again at some point. My oncologist is very "laid back" and is letting me wait until my PSA gets totally out of control. The doubling rate is less than 3 months so if this continues ADT will be unavoidable. I thought about doing nothing but as others have said, the alternatives can be worse. I am thrilled with the decision to put off ADT but realize that unless there is spontaneous remission that I will have to start again. I certainly feel for you, the year of ADT was pretty much the worst year of my life.

[Ftldaddybear]

I did 44 radiation sessions and I'm in my 4th month of Lupron. I can't imagine another 6 months of hormone therapy. I'm with you, I want my body back!! Best of luck to you in your victory!!

[JLINSCHEID]

My doctor suspended my Lupron treatments six months ago and I still notice side effects--hot flashes and low libido. I do find libido coming back slowly. And hot flashes are less intense. So there is some improvement. I know I will have to go back on ADT when my PSA rises faster again.

[Dreamweaverman in reply to JLINSCHEID]

Hi J, Thanks so much for the feedback. I think an on and off ADT may be my journey as well, but I am hoping for best possible scenario. I am exploring and asking around to see if anyone has had an experience of not having to go back on ADT. I will keep you updated.

Cheers

[wallygator]

I opted for RP. Initially my PSA was undetectable, but after nine months I had a BCR. I started ADT six weeks before IMRT. Shortly thereafter, I suffered a heart attack (probably caused by the ADT). After treatment for the heart attack, I had 40 IMRT treatments. My doctor's standard procedure was to give only 6 months of ADT with radiation. I had read some papers indicating that there was an improvement in results with longer ADT regimes, so I told my radiation oncologist that I wanted to stay on ADT for a year. He would not do this but sent me to a regular oncologist for treatment. She allowed me to stay on ADT for a full year. It was difficult, but I dealt with it. I came off of ADT in March of 2018. It took another 9 months to shake the worst of the side effects. As of October 2019, I feel fairly normal again and I still have an undetectable PSA. So far, so good...

Wally

[Dreamweaverman in reply to wallygator]

Thanks Wally for sharing, I wish you continued health.

All the Best!

[Miccoman]

Hi, just my experience with weight gain and loss. I'm 5 years on ADT for metastatic PC (that's where I started, so no RP, radiation, etc.).

I also gained weight initially on Lupron/Bicalutamide. When I started on Lupron/Xtandi, over 3 years ago, I began exercising and changed my diet to only protein and veggies (I love veggies,) no starches at home (when I'm out, I eat what looks good with no restrictions), PLUS at night I chew on nuts while watching TV. I eat about a pound of almonds a week -- good calcium source to help with bone metastases -- and substituted Premier Protein drink for lunch plus water when I feel a little hungry. I've now lost nearly 30 pounds and soon will be lighter than I've been in decades. Energy is better, but not nearly what it was before ADT. T is 41.2 so that's no surprise, but I feel a lot better overall.

Best of luck on your recovery. I'm on ADT until the end, which was supposed to be in 5 years and now they say 10 to 15. I'm happy with mid-80s! I took care of my parents until they passed in their late 90s and no, thank you, to living that long.

[Dreamweaverman in reply to Miccoman]

Thanks Micco, Wow what a journey.