My husband was diagnosed with advanced PCA in October 2018 with extensive mets in virtually every bone and a PSA of 1360+. His PSA was 30 last month after six months of firmagon/eligard and zytiga. We are very thankful!
I have asked his MO if it is possible that while the PSA is still at a high level, would it be possible that the cancer is growing and she said it is very unlikely that it would be given that he is not CRPC and likely doesn’t have any neuroendocrine PC.
My husband has gone from taking occasional Alleve to needing dilaudid every 4 hours in the last 6-8 weeks. I believe through touch alone that his mets are getting larger although I concede that this might just be inflammation. They did a spinal CT recently and said that he had such extensive osseous disease when first images that they can’t tell if anything has changed, although they did recommend 5 sessions of radiation to 2 endplates that were deteriorating in his cervical and thoracic spine. The first CT also said there was nothing remarkable about his clavicles whereas this report said that he has multiple sclerotic metastases on the clavicles.
I know no one will want to give medical advice, but I am curious what your thoughts are about what the doctor said. Do you think it is possible that because his PSA is still decreasing on hormone treatment it is unlikely that the PCA would be spreading? Why might she not bother to look to see if he might have neuroendrocine PCA? If the PCA is not growing, why is he experiencing more pain than when he first started treatment? And finally, shouldn’t his CT have shown improvement to the bone mets?
I’m sorry for so many questions but I’ve done a lot of googling to try to answer these questions but haven’t gotten a lot of answers. I figure there is no bigger source of experience and knowledge to draw upon for answers than this group.
Thank you in advance for any perspective you might have.
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Monkeymamma
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I'm sorry he has such an advanced case -it's a lot to cope with. Your questions:
"Do you think it is possible that because his PSA is still decreasing on hormone treatment it is unlikely that the PCA would be spreading? " I think you have to look at a variety of factors and not just PSA - bone scans/CT, bone alkaline phosphatase, and pain. But while Zytiga is working, there's probably no reason to change it. When it stops working, docetaxel or Xofigo would be good next steps.
"Why might she not bother to look to see if he might have neuroendocrine PCA?" Because his bone lesions are sclerotic. NEPC has characteristic lytic bone lesions.
" If the PCA is not growing, why is he experiencing more pain than when he first started treatment?"
He has had considerable damage to his bone tissue. You can't reverse the damage. I hope he is also taking a bone preserving agent (Zometa or Xgeva). Zometa with Celebrex has been shown to increase survival.
"And finally, shouldn’t his CT have shown improvement to the bone mets?"
If they are small, maybe. If there has been extensive sclerosis, maybe not. Xofigo may do a better job at shrinking them, but it cannot be combined with Zytiga.
Thank you so much for your excellent answers to my questions. In particular, I was not aware that NEPC is characterized by lyric lesions. Now that you say it though, the CT did say there is aggressive appearing osteoclasts of the inferior aspect of the L2 and L1 vertebral bodies and that had not been mentioned before.
And with that in mind, I had asked if there is anything more we should be doing and she said we should stay the course until Zytiga stops working so your comment about staying the course while Zytiga is working also makes sense.
His MO says that she will start Zometa when he becomes castrate resistant as this is protocol in our province. But understanding that it increases survival, I will ask about this again in our next visit.
Thank you. It means so much to me that you took the time to help me understand.
Your MO is correct that Zometa is approved for men with bone mets who are castration resistant. But the FDA approved Xgeva for any man with bone mets, regardless of castration resistant status. I would guess that combining Xgeva and Celebrex is similarly effective to combining Zometa and Celebrex. Perhaps email this to your doctor in advance of your next meeting:
My story has similarities to your husband. I was also diagnosed in Oct 2018 with many many bone mets. I also freaked out when one evening I felt a lump on my rib that was painful to the touch. The MO felt it and said it felt to him like a fracture was healing (I highly suspect I broke this rib several months prior leaning over the bathtub while removing a hair clog from the drain, living dangerously indeed!)
A bone scan taken two weeks ago showed huge improvements, so my ongoing pain has not been backed up by any objective evidence from PSA, Alk. Phos., or bone scan.
To continue on from what Tall_Allen has said, I've been on Xgeva for a number of months and recently got a Celebrex script from my GP. Ignoring any potential survival benefit, it's exceeded my expectations for pain management. I am virtually pain free for most of the day unless I really overdo the physical activity.
Here's a bonus study suggesting a benefit when combining Celebrex with Lipitor:
Living dangerously indeed. I fractured my back getting up off the couch. Thought I sprained it and just mostly laid on the couch for 3 weeks. 2 and a half months later found out it was a T-12 compression fracture caused by bone metastasis. Welcome to the wonderful world of cancer. Back brace (straight jacket?) for 2 months. Never lift anything heavy, dig, etc. for forever. Extensive mets 1st scan. Subtle mets 2nd scan. 3rd scan will be June or July. Who knows? Did ask for and got Celebrex. Wishing you and Monkeymamma the best.
Never lift anything heavy? Dang, just in the past week I was all happy because my recovery has now reached the point where I can once again hike through the woods with a chainsaw and clean up some trees that blew down on the trails during the winter.
T-12 compression fracture can lead to total paralysis below the waist. Was actually told I could continue wearing brace. I wheeled out a "heavy" garbage can to curb and spent next day on couch. I am very careful now. Paranoia? Excuse to be lazy? Who knows. Enjoy.
I probably should ask my MO about what he thinks of my bone strength. He knows I'm running and cleaning out bath tubs, not sure he's know about my woodland activities.
GeeWheez.... Gollybe.... Holyshit... I didn't realize your condition....So I apologize for constantly breaking your chops....... In the future I'll only break them once in awhile.
Thank you for sharing. It certainly sounds like something that could help him tremendously. I was able to get an appointment today for Monday. I’m hoping this will make a big difference!
I've heard that bone "mets" in advanced prostate cancer are often over-growths of bone, rather than apparent "holes" of eaten-away bones (Blastic vs. Lytic). A CT scan may not detect some changes in some blastic "mets". A NM Bone Scan, however, might detect where bones are still actively remodeling, which is often where active bone "mets" are located.
You did not mention whether or not he may be receiving other treatments for bone health with "mets" and while on ADT. If not, you might ask your doctor about either Zometa (zoledronic acid) or Xgeva (denosumab).
Hope the pain goes away soon, or at least becomes manageable.
Does this mean that blastocyst lesions don’t shrink or just that it’s not easy to see differences because you would need to see evidence of active remodelling?
Tall Allen asked about Zometa too but the MO says it is not protocol here before MCRP here. He is having radiation in a few weeks but I’m still thinking I need to advocate harder for Zometa.
If he starts the zometa be sure to add Celebrex. The two combined were shown in clinical trial to reduce death by over 20%. But neither had much affect on survival alone. I’m on both. Little side affect.
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