Pluvicto works but at what cost

[Beach18]

70 yo with Stage 4, multiple bone mets, on Orgovyx daily and Xgeva every 3 months. DaVinci in past.

Previously on Firmagon, Xtandi worked for awhile, nothing with Xofigo and a few rounds of Jevtana didn’t help and caused problems, also had localized XRT - but had to have chemo to qualify for Pluvicto which is a great advanced treatment for many of us

After multiple delays getting Pluvicto with PSA rising and increasing bone pain, first Pluvicto caused more pain - relieved by steroids (thanks TA) and quickly bone pain went from severe to none!

Since 1st treatment-Dizziness, fatigue, intermittent severe abdominal pain, and constipation everyday, PSA declined slightly since that time All symptoms got worse after 2nd treatment - now waiting for bloodwork and then 3rd treatment Again no further bone pain but these Pluvicto side effects are miserable

QOL is not good at all and that’s always been #1 with me Minimal activity now, not a lot of in person family time and pondering whether to get next treatment. I’m on palliative care and don’t really take pain meds since bone pain decreased but can’t get any sleep without benzodiazepines.

Almost 10 years optimistically fighting this and maybe hospice care is the next best step. If I suspend Pluvicto there is no guarantee I’ll be able to get it again Wife and grown kids acknowledge my suffering but disagree Its been 2 weeks since 2nd Pluvicto and side effects are not resolving at all

We all react differently to meds but I know this on line community of warriors understands!

[GP24]

Pluvicto has significantly less side effects than a chemo.

[cesanon]

Maybe 2 weeks is a little soon to make a life and death decision?

[db1966]

Honestly I would take the side effects with Pluvicto as things will improve. If you finish your treatment you could have more years ahead of you. I wish I was in your position as Pluvicto failed and I’m out of options.

[Fightinghard in reply to db1966]

hi DB. Im in same boat. Very sorry

[Yank66]

Hang in there. And you’re right -people here understand. Has your doctor given you suggestions to deal with side effects? MO should be able to help. Try to walk some everyday, drink lots of water and sleep when you need to. Give yourself time to bounce back after each treatment. It can be a miracle drug. Wishing you the best.

[Ian99]

I have not yet taken Pluvicto. Your wife and kids want you to be around. That would push me to continue the treatment and in parallel look hard at how to mitigate SEs. Good luck.

[Beach18 in reply to Ian99]

thank you all for your comments! It’s appreciated

[j-o-h-n]

Never had Pluvicto....... but when I have pain and shit happening I think of all those young men who died during the Normandy invasion. And to me those poor men didn't have a chance and I (we) do......So I suck it up.....

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 07/07/2023 6:06 PM DST

[Beach18 in reply to j-o-h-n]

As a proud veteran and the son of a veteran, I’m puzzled and really not thrilled with your response, but we all have our unique individual stories and ways of managing our disease. Each of us is a roll model in our own way in my opinion. I’m proud of every warrior out there and honor their struggles. I was sharing my story, not complaining about it.

[j-o-h-n]

I was not inferring that you were complaining I was just detailing how I handle my stress. BTW all three of us are veterans..... the number one was in the Normandy Invasion and in the Battle of the Bulge. That's why WWII is close to my heart...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 07/07/2023 6:29 PM DST

[Daddyishealing]

Whatever you choose is the right choice for you . I have seen much worse side effects with my dad who honestly Drs have him hope bc of greed. He wasn't a candidate but he is a fighter and I promised to stand behind every decision he made as will your family . If you are out of pain and you dint have treatment for four more weeks I suggest bc in five weeks check all your blood bc your bone marrow is the most important ,your plasma, platelets etc . My dad got cll so with leukemia this treatment landed us in the hospital since and now on hospice. You however , are taking this treatment very well I have seen one patient do two treatments and save the other four for a latter time considering it's the last resort . From your voice,you my friend are not ready for hospice,and you are simply afraid of losing family time rather than gaining . So how about you let your body heal ,thank God you are in less pain which is awesome and keep your next apt scheduled as you can always push it out of necessary ,but give your body a chance . Ask around if anyone did half the treatments or 2 then 4 etc. If you choose to wait bc your PSA is under control and you are not in pain ,you will still be a candidate to get in the future . Your symptoms by comparison to my dad's in my eyes are all signs of life to come and bc id never want to see what happened to my dad,I swear I'd be honest and it's my nature to be . Settle in and my dad always taught me when you feel unsure of a decision ,often it's bc it's not the right time to make that decision. From my family to yours , we want to see this treatment give you so much more time and the lowered pain soon is going to improve your quality of life . Even when exhausted let your family lay with you. You dint have to lose our on family time if you let people see you even when you are weak. Blessings my friend xo

[Beach18]

many thanks for your advice!