I was diagnosed in October 2021 at age 45 with mets to pelvis, femur, spine, ribs, lungs and scapula. I had gone to the ER with severe hip pain. I was shocked to find out that the cause was cancer. My PSA was 140 and the biopsy showed Gleason 9. Genetic testing didn’t find anything helpful. Initial oncologist recommended ADT with either abiaterone OR chemo. I received a second opinion from Dr Kampel at Memorial Sloan Kettering. He informed me of the recent trial results and recommended that I get all three treatments at once. He suggested that I get treatment with the first oncologist in CT so I wouldn’t have to drive to NY. I had tolerated treatment well with moderate aches and fatigue on days 2-10. PSA was down to 2.54. Then on my 4th treatment I received an Xgeva injection. The overall body ache was severe during that round and pain meds didn’t seem to help. My oncologist stated that the bone repair may have been overwhelming my body and causing the pain. We decided to hold off on another injection. The 5th session of docetaxal was starting out back on track when I began having severe pain focused near my right ischial tuberosity. A stat CT scan showed that the lung lesions had disappeared but there had been “dramatic interval worsening of bone mets”. 😢 Oncologist recommends contacting Sloan again to see if they know of a trial that may work for my particularly difficult case. If they can’t find a trial showing significant promise he would like to do radiation to the hip to relieve the pain and start Jevtana. But he warned that the results may not be very good considering how quickly docetaxal had failed.
WHAT THE F#€#???!!!!!!!!! 😫
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I only counted Taxotere and Lupron - what's the third therapy? Why didn't you get Zytiga?
Xgeva maintains bone mineral density in men on long-term ADT. Why did they give it to you now? Side effects increase with the time taking it, so it should not be started until you need it.
Did you biopsy any metastases for histology, IHC and genomics?
Sorry if I wasn’t clear, but I was prescribed the Abiraterone (Zytiga), Taxotere, and Firmagon all at once. We realized treatment was failing after the fifth Taxotere treatment. Sloan Kettering did their own work up of my biopsy tissue but I did not hear anything back. I will be following up with them for more information. Do you think that can lead to any beneficial treatment options in my case?
Yes, histology, IHC, and genomics may identify cell types that are vulnerable to experimental medications now in clinical trials. Few are already approved - just Keytruda for MSI-hi/dMMR and PARP inhibitors for BRCA+. PD-L1 inhibitors might work if your cancer expresses it.
Sorry to hear of this part of your journey, PAS. Here is some opinion/observation based on being a peer (Dx @ 48 with similar numbers/info) that may help you not feel so out of control:
My Xgeva side effects have been worse than my direct PCa treatments - my bone pain has been off the charts sometimes. I got an Xgeva vacation for the last 18 months due to dental issues and a good bone density scan. Note that Xgeva has a helluva half life and 6+ months can be needed to clear.
I completely agree with TA - WTF with the Xgeva before you were done with initial chemo? Xgeva directly affects bone growth... ask your doc whether the chemo + Xgeva could lead to conflicting bone processes and apparent lesions in an image - remember that an image is not confirmation, only a biopsy can do that, and bone biopsies are relatively rare in our PCa management.
Look the imaging information in the face and ask for a very specific side-by-side imaging comparison that led to someone writing the words “dramatic interval worsening of bone mets”... Again, HOW do they know that these are cancer mets and not some other weird bone activity due to chemo + Xgeva? My imaging notes have never included such definitive (read: scary) proclamations - there is always "indicative of" or some other important disclaimer. Stand and deliver, imaging radiologist.
In my experience, radiation for pain works (had it on my spine - C2 and L4). However, there are some realities and considerations - I had significant pain as the tumors died, and I did not opt for my femur because the radiation could have induced structural weakness because of the met location.
On the other hand, PAS, your PSA looks great. Do not overlook this as an indicator of active traditional PCa. You aren't down yet. - Joe M.
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Edema with Advanced stage 4
Docetaxal prior to Hormone Therapy
1st Time posting. Need suggestions please. 
Does Cabazitaxel decrease quality of life?
Decision time on Tuesday morning after progression shown in scans
