experience with pain from bone mets

[Chris_Ali]

My husband Luke (64 yrs) is a patient at Mt Sinai for prostate cancer stage four that has spread to the bones. We tried Pluvicto earlier this year but it didn’t work. He is now on Cabo, Xofigo(R223) and soon to get Keytruda. We are hoping this line of treatment can ease the pain from bone mets which make it hard to even walk. The pain meds can only go so far and have harsh side effects. Any relevant experience or encouraging stories?

[Tall_Allen]

I think chemo+Xofigo is a potent combination, and can do wonders for bone pain. Has he had Provenge too?

[Chris_Ali in reply to Tall_Allen]

Yes he had Provenge over a year ago. Statistically it’s supposed to help but we didn’t notice an improvement.

[Tall_Allen in reply to Chris_Ali]

Patients live longer.

[mrscruffy]

My bone pain was elevated by psilocybin. Not for the faint of heart but worked for me

[CAMPSOUPS in reply to mrscruffy]

You made it so I cant pronounce what you meant let alone spell it. I'll give it a try.

Alleviate

[Chris_Ali in reply to mrscruffy]

You say your pain was relieved by psilocybin? Microdosing?

[mrscruffy in reply to Chris_Ali]

Dosed every other day. 2 micro doses, two heavy doses causing hallucinations (fun not scary) then two more micro doses

[lowT163 in reply to mrscruffy]

Sounds like the first fun drug for prostate cancer. Just kidding.

[mrscruffy in reply to lowT163]

Oh it is fun!

[Seasid]

How many bone Mets do you have and where they are located? On which scans are the Mets visible? Did your husband received Nubeqa? Did they biopsy his Mets? What is the PSA level of your husband?

[Chris_Ali in reply to Seasid]

Luke has bones mets all over: neck, collarbone, spine, hips, legs, arms, visible on PSMA scan. Radiation helped in the hips and lower spine. No biopsy or Nubeqa. His PSA this year was 45 in Feb and seesawed up to 775 in Sept and now it’s 587 after 1 round of Xofigo and 3 weeks on Cabo. Pain keeps him in bed most of the day. Waiting and hoping for treatments to have an effect.

[Seasid in reply to Chris_Ali]

I was recommended by my MO the following clinical trial with Nubeqa plus new PARP inhibitor from Astra zeneca. The toxicity should be less than from the old PARP inhibitors as this new one effects only the cancer

classic.clinicaltrials.gov/...

You probably don't fullfill the inclusion criteria for this trial, but check it for yourself.

[Seasid in reply to Chris_Ali]

If your PSA is so high you should be able to do a liquid biopsy like Guardant 360Cdx

[AlwaysHoping77]

My husband took Keytruda for about 6 months and it really helped his pain! Before he went on it, his ribs hurt so bad he couldn't even laugh or sneeze without excruciating pain. After a couple of doses of Keytruda, the rib pain was gone. And even though we just stopped treatment due to a spread in his shoulder, the widespread pain he had in the ribs and other areas is still gone, so that is good news. I'd say he's in better shape overall now compared to how he felt after his first chemo failure. Question about pain management - have you met with a palliative care team? We haven't yet, but our new doctor is going to set us up. They specialize in pain and also managing the side effects. It could help to get him on a better regimen. As a final note, I'm so sorry you are going through this. I know how awful it is to see your loved one in pain. I really really hope he has success with this next treatment and the pain starts to fade for him. Stay strong!

[Chris_Ali in reply to AlwaysHoping77]

Thanks for sharing the positive Keytruda experience. We’ll explore palliative care.

[babychi]

Yes, bone pain can be horrific. Hydromorphone (Dilaudid) assists my osteo and spinal issues after very poor outcomes from 4 joint replacements. OK the constipation is a side effect but papaya, prunes, whole foods, lentils, oats and coloxyl with senna ease that. I’ve almost given up on many occasions but life is worth continuing if you can find a supportive MD or pain clinic. No one understands 10/10 pain unless one is feeling it. Good outcomes to you and yours💜

[Izzygirl1]

My husband starts Pluvicto 12/26. He did triple therapy but meds no longer working. He has Mets in every bone in his body. Pain in his back and legs is making him very uncomfortable and keeping him in bed at the moment. He’s on Dilaudid for the pain. Will start Xgeva soon too. I could use some encouraging stories too! Hoping MSK will have some good advice for us next week when we visit them.

[Chris_Ali in reply to Izzygirl1]

I sympathize, and I hope Pluvicto works for your hubby. It has worked well for so many people, just not for us alas.

[Izzygirl1 in reply to Chris_Ali]

Thank you! I hope a new treatment works for your husband very soon! 🙏

[robert570]

I have bones mets on my rib cage, back of my neck, middle of my back for almost 10 years with minimal pain. Been on Percocet all this time with no problems. Go figure? I don't know why I'm so lucky, but I'm not going to complain. Currently on Jevtana chemo with Prednisone. Pluvicto failed me also. Not doing bad, I took 2 vacations to Florida this year and I drove from Ohio. Keep Positive!

[Professorgary]

I had a Psa of 5664 with mets in lungs, ribs, pelvis, spine and both femurs. Pain level was 10. I am now on lupron and abiraterone with prednisone but before I started treatment doc put me on Celebrex 400 daily and I also take 2800 mg curcumin and 400 mg of magnesium. There was a significant reduction in pain even before I started ADT. If you research curcumin and Celebrex for prostate cancer you will find some interesting info. Best of luck and God bless.

[Chris_Ali]

So you’ve had PC since 2000 it says on your bio. We discovered Luke’s PC in 2010. Seems our was much more aggressive. I’ll take a look at those pain relief options. Wish you the best.

[swwags]

Consider corticosteroids, Takes a wee bit of time to work but does work