dx at 52, radical surg in 2005 - Gleason 7. Started Eligard 2 yrs ago, 36 sessions radiation in Sept & Oct. - body is falling apart.

[forest-dweller]

Husband got prostate cancer age 52, now 69 and the battle is on. Eligard, radiation…

After surgery in 2005 (Gleason was 7), things were good for about five years, then PSA started stair-stepping up in small but steady increments.

It was too small to be picked up on scans so Eligard was prescribed about two years ago. It showed up last summer in MRI so 36 sessions of radiation were endured last September and October. He has appts for scans and doctors at Mayo on April 18. In spite of constant and often severe pain, I’m going with him. I do better at talking to doctors. He forgets some things, goes off on a tangent.

He is losing muscle mass, is exhausted, coughing constantly lately. It’s hard for him to accept that his body is going downhill so fast.

It sounds like they did find a little nearby lymph involvement - would that make him stage IV?

We both feel the Eligard is doing more harm than good at this point. His PSA had come down to pretty low levels last time. I’m sure it would start going back up a bit, if course we’ll have to keep an eye on things.

We’ve pretty much been on our own with this, have stumbled through together. I was an RN back in the dark ages, he also has some medical background.

He’s number six of 14 kids - 10 are boys. 9 have prostate cancer, several had early onset and aggressive.

Anyone else that can give us some info? I’m not looking for anyone insisting we try a certain med or treatment, just what to expect at this point… 🤷🏻‍♀️

Thanks, prayers for you all.

[Tall_Allen]

I was hoping you could clarify his situation: exactly what is his PSA now while he is using Eligard? And was the pelvic lymph node (stage N1) detected before (e.g., on prostatectomy pathology) or after he started using Eligard, and how was it detected (e.g., enlarged on CT? or detected on a PET scan?)?

[Poowater]

Agree.

[Hidden]

it all sounds so familiar

Especially sorting things out on your own

Talking to medics because husband forgets doesn’t understand or goes off on a tangent

The family history re his brothers is terrifying

We start Lu177 tomorrow in London. We live in Scotland

The trip south is a bit of a nightmare

We are hopeful for some improvement as things couldn’t get much worse

I can’t tell you where things will go but know you are in thoughts and that we do understand how hard this all is

Look after you both

[Benkaymel in reply to Hidden]

I'm considering self-funding LU-177 in the UK. Can I ask you where you're getting it and how much it costs per infusion? Thanks and very best of luck with it.

[Hidden in reply to Benkaymel]

hi

We are going to the London Clinic

The scans we needed cost just over£5000 and each infusion costs £12000

They recommend 6 infusions each 6 weeks apart

Good luck

Sue

[Benkaymel in reply to Hidden]

Thanks Sue.

[Survivor1965]

Which Mayo location may I ask?

[AMIN25]

Overall that seems like a long period (2005 to 2021 = 16 yrs) that he was cancer free - granted Eligard is not helping him - but was he on other treatments before Eligard or has the cancer returned 2 years back... if other treatments worked earlier there may be a benefit or revisiting .....

[GTOGuy]

So sorry you’re dealing with this. my husband had a similar experience with Xtandi and we took him off it. He felt much better once he went off the drug. Since then we have been trying different alternatives like cryotherapy with Dr Gary Onik in Ft Lauderdale. Then did some immunotherapy and then Taxotere. He tried DES but once he had a stroke we had to take him off. Now we’re planning to start Jevtana this week until he can get Pluvicto. The point is that you want him to have the best quality of life as possible and if he’s miserable maybe he should try something else. Also, my husband walks 2 miles a day (whether he feels like it or not) and does exercise at home. It helps a lot with his overall state of mind and keeps his body strong. Bets of luck and prayers to you and your family.

[j-o-h-n]

to F-D,

I've been fighting those tiny bastards since 2002. I've been on Lupron/casodex for 15 years and just taken off casodex last month and will begin NubeqUa starting tomorrow 03/09/2023. I guess Lupron/casodex has been good for me so far.... I am 86 years old and trying to survive using humor. Tell Your Main Squeeze,,,, that he will beat those bastards and to try an laugh as often as possible. I do understand the visit/paying attention issue you have to face, my wife has the same problem with me...... Regards...

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 03/08/2023 10:25 PM EST