Prostate Cancer, Stage 4, spine & pelvis, Eligard, now abiraterone

A number of us have been on Eligard or Lupron along with Zytiga and prednisone. I was on them at one point and I have now moved onto the next drugs. There are a number of side effects you could be feeling with all the drugs. Hot flashes, brain fog, high blood pressure and maybe even fatigue. You may have some or all of those feelings.

Have you had a PSMA Pet test, what did it show?

Sometimes they will give you those drugs in preparation for radiation. The drugs can reduce your metastasis and stop them from growing in order to prepare for radiation.

Have you had a biopsy? Do you know what your Gleason score is? That will tell you how aggressive your cancer is.

What was your PSA when you were diagnosed?

If you give us more information, we can help you with information about what could be done in the future.

Have you been to a Mayo Clinic and have a plan for how to treat this?

Have you been to an oncologist or are just working with a urologist? You would be best off working with a Genito urinary oncologist to make a plan for your future.

My experience, stage 4 Metastatic to bones and 2 lymphoid (?) from first diagnosis. Started on Firmagon and presnidone psa went from 932 to around 7, had 10 rounds of chemo, currently get monthly Firmagon, quarterly shot of Xgeva, take Abiraterone and Presnidone daily. Psa has been sitting at .01 for quite a while now. No they can't cure it but can control it. I go to a large Cancer Center and have a wonderful Oncologist assisted by a great helpful staff. I wish you the best on your journey, there are a lot of good people on here who will share with you. Best to all.

Jeff Marc/ Steve cando hit the nail on the head. Heed their advice. My BIGGEST thing to deal with is FATIGUE with arbiterone/Zytiga.

My husband is Stage 4 and has had many metastases over the years, mostly on his spine, but also on other bony spots. He has been on Lupron for many years, and took Zytiga with prednisone daily, which kept the cancer in remission for three years. After Zytiga stopped working, he had Pluvicto infusions, which he finished last month. Depending on the results of a scan later this month, we will learn next steps, of which there are many. So hang in there---many treatment options exist which can keep the cancer under control for quite a while.

In addition to debulking surgery on my spinal metastasis and radiation therapy to my spine and prostate, I started three years ago on a different combination: Firmagon (a testosterone blocker) and Erleada (an ARSI). Earlier this year I switched from Firmagon (monthly injections) to Orgovyx (daily pill), and that has made a huge improvement in my quality of life.

One danger in the U.S. is that some insurance companies might steer you to cheaper meds even if they're not the optimal ones. Zytiga is quite old (approved 1995) and available as a generic. The combo I'm on would cost over $20K/month at U.S. prices, I think.

It could be that Zytiga and Prednisone really are the best choice for your unique situation, but it's worth digging a bit with your medical team to make sure.

I’m 74 diagnosed stage 4 prostate cancer in 2018. Metastasized several locations in bones. Did 4 chemo infusions, followed by Lupron injections (one year) then transitioned to orgovyx ADT. No cancer growths for 5-6 years. I keep finding ways to deal with all the difficult side effects from ORGOVYX . Exercise and diet makes a big difference. Thanks to Dana-Faber and a bit of Divine Grace I’m doing fine. Good luck to all.

I was on Zytiga for 2 1/2 years. After Zytiga I move to Darolutamide and my PSA has been below .1 (undetectable) for 10 months. There’s actually a recommendation to move to one of the lutamides after Zytiga and Darolutamide has the least side effects. When I was on Zytiga my PSA only hit .1 one month in 2 1/2 years though it did stay quite low.

Here is a link to the lancet article that discusses the sequence of using the drugs.
https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(19)30688-6/abstract?mc_cid=c2dca8aa74&mc_eid=99575fc699

I left out one of the most important side effects.

Eligard and Zytiga will cause your muscles to deteriorate quickly. A recent article I read said it even can happen in six months. Make sure to exercise regularly to beat the fatigue and do some weight exercises to keep your muscles in shape.

I had a knee replaced five months ago and it is taking me five months to build up my muscles again so I can walk decently. I still can’t stand up from the floor without holding onto something. Going to the gym three times a week to try to resolve that. I had my other knee done five years ago and recovered in two months, muscles in a lot better shape back then, even though I had been on the equivalent of eligard for two years at the time.

Sorry about time delay. Wasn't feeling well.
My Prostate cancer was discovered from sample during my TURP. Sample came back as 90% cancer. After labs I had a Gleason of 4+3=7. Next was my PET Scan that showed I was Stage 4 (it was in pelvis, spine, right shoulder, and lymph nodes, were saturated.

Was told that I couldn't do radiation because something to do with my kidneys and I refused chemo. Next was my bone span. Showed extensive in above mentioned.

They are now talking the Zytiga and prednisone.

I should tell you they gave me approximately 2 years. During this time I am looking for quality of life. I'm 71 and work every day on my feet. The Eligard makes me tired enough I don't know what the Zytiga will do.

Stage 4, mets to liver, lungs, bones, 3.9 years in. I am on second progression (Biochemical Recurrence). Currently on Eligard, Zytiga and dexAMETHasone, PSMA Scan next month (October). Low/Moderate Exercise everyday at least 60 minutes, diet is nutritionally based, social life is grand, and faith is wonderful. RLE (Relative Life Expectancy) is great. Started age 67, never thought I'd live to see 70, I just turned 71. Best version, wellness driven and wholeness guided.