Today we met with oncologist after bone scan and CT.
Significant increase in bone Mets.
We knew something was off because of pain.
He has done Taxotere , Lupron, Xgeva and was entered into a clinical trial but got out of trial because he was so very sick.
Now Zytiga and PSA is down but increase in bone Mets is huge.
New lesions in ribs spine femur arms
Pelvis sacrum.
Anyone have this experience?
Have you discussed Xofigo? He would have to come off of Zytiga first.
I wanted you to know my oncologist added Xofigo with Zytiga . Someone on this forum posted the Bayer (maker of Xofigo)warning
on combining the two drugs.
Oncologist immediately took off Xofigo injection.
So only one dose went in combining the two drugs.
You would think they would know this!
I'm surprised he didn't do it the other way around - take you off Zytiga since it is no longer working.
The thing is..... PSA is down on Zytiga and bone scan showed increase in Mets.
The increase in Mets was enough that he felt Xofigo was warranted but he did not want to discontinue Zytiga.
I ended up on both!
Then warning was discovered.
PSA is not the best measure of success when there are multiple bone mets - bone alkaline phosphatase and radiographic evidence are important too. If all other indicators are higher, but PSA is lower, it might mean the cancer is mutating into a form that doesn't put out a lot of PSA.
We were given that as a possibility by PA.
Oncologist to call Monday.
Have you known others and what does it mean I wonder that Mets increase and PSA drops?
Look closely at Xofigo. Anecdotally l had a poor outcome and so have many I've been in contact with online. My pain did not improve, my PSA shot up scans showed little impact on bone Mets.
I agree. I started Xofigo because of bone pain. Lowering ALK and hugely reducing pain was it's success. However, 2 months after the final treatment CT and PET scans showed a seemingly huge increase in the number of Mets and, while radiation onc says PSA doesn't matter right now (since it was about 10 when I started Xofigo and 600 after finishing). I have since started Docetaxel and 2 months in (start of 3 infusion) PSA had dropped continually to about 100. I personally would have preferred chemo before spine lineac radiation and Xofigo. Hope I still feel that way at the end of chemo.
I was taken off Zytiga after PSA started to increase and scans showing a progression in some bone Mets. Next for me...my MO ordered Xofigo.
Maybe mutated to neuroendocrine.
I was wondering that too. Neuroendocrine cells do not express the PSA. He could check his Chromogranin A and NSE (blood tests). If that's the case, I'd want to look out for visceral mets.
Neuroendocrine prostate cancer (NEPCa) represents a minor population of PCa, yet NEPCa cells exists in the most advanced stages of PCa (6). Importantly, the population of NEPCa cells might increase during the current ADT with anti-androgen treatments (7). Different from most PAC cells, NEPCa cells express little androgen receptor (AR), thus they are inherently resistant to the ADT treatment. The common markers for these NEPCa cells are Chromogranin (ChrA), neuron-specific enolase (NSE) and synaptophysin (8).
Source: ncbi.nlm.nih.gov/pmc/articl...
Sounds like what happened to me. Hugh increase in bone mets was causing a lot of pain. MO started me on Xofigo two weeks ago (still on Zitiga as well.) About a week after the first treatment, I started getting relief from the pain! This stuff is really working well for me.
They mentioned Xgofigo.
Please let me know side effects.
Here's a link to the prescribing sheet which has the results from the clinical trial that was done prior to approval. It has all the details on side effects experienced by all the trial participants:
accessdata.fda.gov/drugsatf...
Good luck with your treatment, I will probably also be doing Xofigo next.
Wow. So sorry to hear of the new Mets. That worry’s me as I get new pains Dailey. Hang in there and fight a good fight.
How are your other liver enzymes such as ALT, AST and Bilirubin?
ALT and AST high
Have not checked bilirubin
Bilirubin is generally the slowest to be effected. How high are your AST and ALT? The high ALT and AST could be from Zytiga. Did they go up after you started Zytiga?
Yes those tests did increase after Zytiga
I had a few bone mets 14 mths ago, but 2 mths ago I had dozens. So scan is beginning to resemble dalmation dog, spots everywhere, but no pain yet.
I begin Decetaxel on 17th, 10 doses max, at 3 weeks apart.
I have no idea of taxotere will reduce bone mets but I can get Lu117 and maybe radium 223 within 6 weeks of ordering it. Nobody is talking about Xofigo here.
Psa is about 8 now, after Zytiga failed, rising fast. No visceral mets yet, just bones.
Cycling 200km a week still, and working in my shed doing craftwork.
Once Pca is in bones, relationship with Psa can get hazy, but most guys with high amount of Pca in bones have high Psa. If bone mets don't make Psa, a man can't get a fix with Lu117. Maybe with Radium 223, not sure, I think I have 5 years, onco says 8 years.
Nobody really knows.
Patrick Turner.
I've been on treatments 4 years now.. Condition is serious bone mets, Multiple in spinal column from neck down to mid back, mets in ribs and at collar bone. iliac hip bone and marrow Did many different treatments including 2 big rounds of radiation. Firmagon for 2 years failed after 18 months. Then Lupron Elligard since.. Failed after 1 and 1 half years..
Am now on Zytiga and predne Steroids PSA went down some but not enough. Am now on a Clinical Trial along with the Zytiga and steroids. Psa went to its lowest .243 which is great. Go for Pet, and several other scans next week to see if there is any further progression. Do not know what other meds I am taking due to experimental . Will let you know if any of this is stopping the cancer and spread. Sure Hope so. We all need a break from this. Also at start of my prostate cancer in late 2016 PSA was 28 had several PSA down and then climbing back up through out this journey. My Gleason score was 9 in all 12 biopsy's
Just so you know-my husbands cancer progressed to liver and brain and we lost him 1-24-20.
He was unable to stay active like you are.
That will help you to continue treatment !
May you win this fight!
So SORRY to hear of your loss. Thank you so much, I continue fighting this very hard as we all do hoping for that cure someday. Currently it has been harder to do things like walking in a mall etc. Wife keeps me going, she is a great caregiver along with my 8 year old only grandson. We are currently involved with Relay for Life (American Cancer Society) Raising funds to help all Cancer patients. Yes this is a terrible health problem, Tiring and all the visits to the Dr's and Cancer Research Center. Trying all these different Medication programs and Trials is what tires everyone out. Hoping one day to having an easier way to fight Cancer. I wish everyone would be able to WIN THIS FIGHT.
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