Hubby diagnosed Nov 2021. PSA 600. Múltiple mets to spine, lymph nodes, pelvis. Started Firmagon injections. psa May 2022 1.42 started docetaxel in May too. After 6 cycles psa 8, moved directly onto Cabazitaxel, after 3 cycles psa 150. Started xtandi after 1 month psa down from 150 to 115, after second month, now, psa 210. Hubby comes out of hospital today after 9 weeks. Had a fracture on the t10 vertebrae, operation to fix it 3 weeks ago. Going for radiotherapy on spine Mets on 29th Dec. On top of all this shite, he has covid. Appointment in Jan with oncologist. What should I be asking for? Why has nothing worked for him?
I'm really sorry to hear this Ginny. As you know your husband's and my paths are similar. I'm due my 10th Docetaxel cycle just before Christmas but have postponed for a week as I don't want to feel rotten over Christmas. I'm also recovering from a bad cold. My Oncologist suggested that the sweet spot for Docetaxel effectiveness is 6 to 8 cycles so the 10th my do less good than harm. Good luck with the radiotherapy and please post on how that goes . I suspect that might be the route I go down. I'm going to push the prospect of LU177 treatment although it doesn't look like it's going to be available on the NHS unfortunately, due to cost effectiveness.
My PSA is rising, 78, but the scans seem to show no cancer progression. So the question is where is it? I suspect in the bones.
Perhaps he can get two scans - a PSMA PET scan and an FDG PET scan. If his mets are PSMA-avid and he is not showing much FDG uptake, maybe he can be treated in Richard Baum in Weisbaden or Uwe Haberkorn in Heidelberg. They are experimenting with a mixture of Ac-225-PSMA and Lu-177-PSMA. Or maybe, a mixture with 177Lu-FAP-2286.
Ginny, so sorry to hear about this. It is both scary and frustrating when the PSA just won't stop rising. My husband has had everything thrown at him, including 3 clinical trials. Docetaxol "worked" while he was taking it, beat his PSA down 90%, but it left him with crippling neuropathy (he's diabetic on top of it all). Moment he stopped the Docetaxol PSA roared back up to 485 and scans looked like the chemo had just goosed the metastases. He's currently on LU177, which is both working and has many fewer side effects. PSA dropping steadily. Not a cure, but definitely worth trying if the PSMA scan shows he is a candidate. My husband lit up like a Christmas tree -- mets everywhere in his bones and so the radioligand has plenty to latch onto. QOL is first rate after about 10 days following the infusion (6 infusions 6 weeks apart is what is approved here in the US). It's given him a breather. LU177 is a beta particle"grenade" and infusion center doc tells us that trials for an alpha particle "grenade" are showing promise. So there is more on the horizon.
Also, is there any chance of getting into a clinical trial? One of clinical trials that my husband tried did work (immunotherapy), but he was on the dosage arm and had a massive cytokine reaction to the 2nd dose so had to stop. It may have been nothing more than the trial dose he was on was too high for his tumor burden. Trials are gambling, but if it is obvious it's not working, you stop and you are so monitored you know pretty quickly.
Thanks for your message. We have radiotherapy on Mets in December and then 2 scans in January the see oncologist 1st Feb. They’ve told him to continue with Xtandi until after scans, although it’s not working. Worried sick his psa will be in the late hundreds by the time of the appointment. So tired of this bloody roller coaster of a ride. Despair always seems to follow hope!
Thanks for your feedback. No biopsy has ever been done. I will ask about this and the blood evaluation when we see him at the start of February
I am very surprised that the doctors don't do all of that themselves?
Do you have private hospitals in France? Maybe the public hospital is overloaded with work at this moment? I don't really know. Can you really go to Germany as TA suggested?
What a horrible nightmare for both of you. It appears things HAVE worked but not _yet_ enough. Tall Allan has logged in and offered more guidance than I can. I just note that one member of our support group was near death and hopeless three months ago and now shows a scan with massive shrinkage of his metastatic disease. He again has hope.
I can't comment. I am not a doctor but I can imagine. I am just surprised with France. I believe that they have an excellent medical system. Maybe not for everyone? I really don't know.
Hi Ginny. My profile matches your husband's quite closely, except that my initial PSA was much much higher. In terms of new ideas, I will share that I have been on "triplet therapy" - ADT (Firmagon), chemo (Docetaxel) - and ARAT (Zytiga/Abiraterone), all at the same time (6 cycles chemo done). The last item I didn't notice in your husband's therapies. So far the combo has been successful. Also practicing low carb. 🙏
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What's next, please help with any advice 
Please help shed some light…
Please help - what should we expect? Fast rising PSA, Bone and lymph node mets, gleason 10!
Chemo not working for bone mets
Come to end of treatment line after R223. Nothing else available. 
