Would anyone share their experiences with Lupron depot (leuprolide acetate) with Xtandi ( enzalutamide) ADT therapy please?
Am 72 with advanced metastatic prostate carcinoma in my lymph nodes and cervical spinal column. Gleason 8, Testosterone still high. . PSA was 350 now 150.
Am still teaching at various universities as contract lecturer in Berlin , Germany.
Was feeling no pain until all was discovered .
Now lower back pain and joint pains with tiredness.
Need to live as long as possible to get things in order and care for family.
Appreciate all feedback and advice etc.
Thank you!
Rudra
Written by
Rudradas
To view profiles and participate in discussions please or .
Hello. Every body has a different response to these drugs. When my father started leuprolide acetate I was certain he would have hot flashes as that seemed so common among the users here. But he did not have any. His Hb went down immediately and we had to get iron ampules injected but once it went back up it has stayed there. His fatigue was because of low Hb but I have heard ADT can cause fatigue and muscle weakness anyway.
He takes Abiraterone instead of Xtandi so no feedback on that.
He did have some mild bone pain. We got a Dexa scan done and a bone strengthening agent was added to his treatment as his bones were quite weak.
You seem to be a perfect candidate for a new therapy. The PEACE1 trial (in France) announced last week that combining abiraterone and docetaxel from the start gave better results than either alone. You may want to share this link with your oncologist:
All I can tell you is that weight training at least 3 days a week to all muscle groups for at least an hour will give you more energy, avoid muscle loss, avoid weight gain, make you happier, make you live longer. Higher a personal trainer to start you off right. It works for me. I feel great on adt with Zytega albeit with a reduced six drive.
In Germany, you have some of the best doctor's and treatments in the world available. At the moment you are considered Hormone sensitive, not castrate resistance. Ask your Oncologist if they will treat you with LU-177 at this stage and / or AC-225. My experience so far is that Enzalutamide with quarterly ADT (Prostap) is working well, almost one year and a half into this journey. Occasional hot flushes. Some fatigue, mainly in the morning. Exercise helps. Good luck from the UK.
Have been on joint Lupron and Xtandi since Nov 2019. Prior to that Lupron and Casodex which failed after 10 months.
The Xtandi brought my PSA down to .21 nadir and then last month up to .27. (This could be random fluctuation, methodology of other factors causing the increase.)
Side effects of the two drugs just intensified those I had prior. They were
Hot flashes, especially when hot.
Extensive muscle loss
Overall tiredness most of the time
Lack of endurance for doing things
Some random joint and bone pain
And the dreaded Brain Fog.
Secret is to just deal with it and keep on pushing through no matter what. Rest or sleep when needed. And keep a positive mental attitude.
I don't look at PCA being a disease. Instead, I consider it a Civil War going on within my body. With the PCA cells being a guerrilla force that need to be eradicated. So feel thankful that for right now because it could be worse.
Interesting. Rudra was the name for the ancient fierce form of deity in the Vedas. (later became Shiva). The “ Howler” it was called. And Das refers to a devotee or one who serves. Are you Indian in heritage? That fierceness will serve you well in this fight
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
What do you make of this?
What Your Pca Cannot Do!
YOUR ADVISE RE WHEN DO I GO ON CONTINUOUS ADT VERSUS INTERMETTENT ADT?
what are you doing for income? do you have ideas or suggestions.
