So sad but my husband started Abiraterone in late December with a PSA of 937 and it was measured on Monday again. Result only just came in at 2764. Does not look like Abiraterone and zoladex combo had any effect on the PCa at all. Is there any harm in continuing with Abiraterone? It might be holding back some of it? Symptoms include increasing breakthrough pain and the return of some of oedema. Just yesterday for the first time he had said that he felt a hot flush and I was hoping that Abiraterone would work for some time at least. Lu177 is not a possibility and we do not want to do Crescendo trial. Genetic test results will come in about 3 weeks' time. Any suggestions for coping with bad news or symptoms gratefully received. Thank you all.
What to do next?: So sad but my husband... - Advanced Prostate...
What to do next?
The easiest what I have on my mind is to change that ADT injection to Degarelix (Firmagon). I don't believe that it will help much but you don't have anything to lose.
István
What's about Xofigo?
I started Abiraterone in 2022. My PSA was at 800 just a few months ago. I had a CT scan on the 3rd of this month.My oncologist called today to give the good news that my PSA has dropped to 117! My cancer has spread to my bones and I was diagnosed as terminal! The CT scan showed no further progression amid I feel the Abiraterone is working well for me! Keep the faith and I will hold your husband in my prayers!
Jevtana is indicated when docetaxel doesn't work.
That was tried and did not work at all.
hi spw1
My husband started abiraterone and prednisone in July 2022, after 6 docetaxel.
Abi stopped working in October. MO changed prednisone to dexamethasone to reignite the abi and even though it’s not working 100% it has kept his bone Mets stable. So the doctors have kept him on it and say it’s working about 80%. His 2 liver Mets have increased in size from 14 mm to 30 mm and his PSA has gone from 1.18 in July to 6.87 now. But the CT scans are guiding the MO. She feels his PCa is stable based on scans and how he feels, and no new lesions anywhere else in the body and he is doing SBRT on those liver lesions next week. So hopefully the abi can do it job better when the lesions are gone.
So even though his PSA was going up a little, his MO watched the scans for 3 months to decide we whether to take him off abi. No sure if your hubby is on prednisone? An easy switch to change it to dexamethasone? And what have his CT scans said? Doing a partial job is better than having nothing protecting him I think.
Best wishes to both of you 🙏❤️
Tracey
Thank you Tracey. I will try to get them to switch to Dexa. How much dexa did your MO prescribe instead of prednisone? At the last scan in Dec, there was one liver met. Now we do not know as the MO is not giving a date for the CT yet. Your MO is trying. Ours keeps suggesting acceptance of defeat. It is not nice. At the least he could say, things are difficult but let me try this for you or that. I just do not like him saying 'Maybe a time will come when we don't drag you here'.
What an awful thing to say ! So very sorry to hear the Zytiga is not working (only just seen your post )
Sending prayers and hugs as always
Kim xx
oh no, that attitude is awful. Hope is all they have. My husband feels fine, good even at 55. Another trial MO at one of the best cancer centres in Canada said 3 months ago he had less than 2 years since the top 3 treatments for PC had failed in a year, and he felt all other treatments I listed off will fail him also including LU-177. We won’t go back to see him again. He didn’t even seem to believe him when he says he feels good.
He was on 5 mg prednisone and switched to 2 mg of dexa. (With 1000 mg of abi.) Only worked with prednisone for 2 or 3 months and now surprisingly seems to be working again, our MO said she likes dexa better but abi is paired up with prednisone in trials. Your MO will tell you how much he needs and a switch is just a pharmacy phone call, so what’s to lose? And get his scans done soon, your doctor may be surprised.
For us somewhat working abi we will take and gives us hope. That’s what my husband needed to hear now. May not last long. But it allowed his doctors to focus on the liver Mets he has and getting that under control will hopefully be a game changer. I may not see the full picture of what’s to come, so if anyone with greater wisdom wants to burst my optimism bubble I will take it to be prepared. The thought that he may have a neoendocrine component in his liver PCa has been tossed around but the biopsy said “poorly differentiated” at the time and they felt it was not small cell then.
the best to you both
Where are you located? In his situation having failed chemo and the new anti androgens and Lu 177 PSMA is not an option, you should consider to consult in centers of excellence to get an idea of possible clinical trials. Where is the crescendo trial?
We are in the North of the UK and have been to the Royal Marsden a few times. The only trial they have is Crescendo phase 1. That is a weekly infusion in London - 5 to 6 hours in the car on a good day which will be impossible for him at the moment on English roads. The first time they keep them in for 10 days but the next time, it is there for an infusion and then back a few days later to see the team and then back there for infusion. Doable if one is fit enough to withstand that journey.
I think they have that trial in Liverpool and Manchester - would either of those be any easier for you?
Manchester - we asked for a referral to them. Never heard back from them. The MO team has given up, keep hinting about help from care in community. The hospice team deals with pain medication so the MO would like to wash hands off us. I am not letting them off yet. When I was in India with my husband, all the doctors said that on paper things looked bad but when they met my husband there was a glow of life about him and they wanted to help. Shame that we are not living there. In my professional role I worked on difficult cases and never gave up on my clients just because things got difficult. Doctors in the UK could work within the rules but try and help the best they can. I am not convinced that in our case they are trying.
If I understood correctly it is an immunotherapy treatment targeting PSMA expressing cells. If he has a lot of discordant PSMA cancer with a large amount of cancer without PSMA expression it may not be a good trial for him.
I would discuss this situation before deciding about this trial.
There is a trial with Keytruda. If the cancer genome shows microsatellite instability-high (MSI-H) or mismatch repair deficient (dMMR) the treatment could work.
cancerresearchuk.org/about-...
The Marsden and UCL London both rely on one Marsden scan from early November that showed PSMA expression to suggest the Crescendo trial. However, a December scan in India showed a lot more FDG positive cancer than PSMA positive. Even a lay person like me could see that in the image comparison. One FDG+ was in the liver. Risky to go with phase 1 trial at great personal pain and away from home every week. I am wondering if he has MSI_H or dMMR. I was told in the UCL that if he had those genes he would have had a second cancer. I am not sure how accurate that is as the UCL was very keen to get him on Crescendo to fill the slot they had.
We also are about 5 hours from infusion center and about 45 minutes of that is on a rough driveway and dirt road. Fortunately I am in better physical condition but it is still an ordeal. This last time (the past few days) we had to stay over for 4 days due to bad scheduling of blood work initial appointment to review the results and then another day for the infusion. We have a very comfortable Range Rover Sport but unfortunately it is often in the shop (even farther away) so we bought a new four wheel drive truck. It is also pretty nice on the rough roads. New trucks here in the US are very comfortable. Seats recline to almost bed position because we got the crew cab with plenty of room for the incline. Are there any ways you can increase the comfort of your ride? More pain meds for the trip?
With spine mets and things complicating the matter, not much we can do. Cannot afford to buy another vehicle at the moment. Is the Crescendo trial helping you?
I am doing taxotere chemo. We can't afford a new vehicle either but trying to keep the 2016 Range Rover running is almost impossible. Can not drive 7 hours or have it towed and the dealer can not seem to fix it so we had to get something reliable. How knows how long I have to spend my savings so WTF. If I live long enough I may inherit some money but although my plan is to live a while longer, who knows. Waiting for the results of the chemo which will not be clear until another two to four infusions.
I mainly have weakness, but fortunately no pain at this point, no mets to spine fortunately. When I did have bone pain I found morphine to eliminate it. Are you getting good pain management with the real stuff. Here in the US they are really hesitant to prescribe opiates unless for hospice. My primary care doctor prescribe all she could over a few months even though my pain subsided (no idea why) so I can have it if I do need it.
I hope that the chemo works for you. My husband has hospice managing the pain. The MO seems not to work with the coal face side. They passed him onto what they call care in community to the local hospice. They take about a week to respond but are quick once they make contact. My husband seems to politely answer that he is good whenever they ask. So they hesitate to add morphine dose to the background doses he has morning and evening. In the evening, when the witching hour comes, it is a different story on pain. Increasingly he has become unable to do much so we have a parking badge. He could cook a meal for himself in Dec but not now. Yet, he will beat me in crosswords and things! I am grateful to have him around even if he cannot do much physically. But for an outdoor loving active guy, this disease has been cruel.
My biggest regret is not being able to ride my bike> I had switched to an e-assist bike but I need to be sure I have more strength and stability to risk riding. I had one pathological fracture hitting just the wrong spot where there was a lesion and I do not want to repeat that pain. I hope that after the chemo I will be back on the bike.
Are there no medical transport facilities? Here we have the choice of an ambulance largely paid for by insurance and even helicopter for emergencies. Also private companies called cabulance. Probably expensive for a 5 hour drive. And one more off the wall possibility. We have a camping trailer with very comfortable beds. We plan to travel across the country as a bucket list item. Hopefully we can manage it while still able to endure the driving. It is not legal to have passengers in the trailer while underway but who would be looking?
I hope that you can ride again after the chemo. My hubby used to like cycling and it was good for the back pain. Trials etc require us to get him to these faraway places. Our problem is that no suitable trial is found yet. Take care and hope you get to tick that item off the bucket list. We would love to walk in the Lake District together - up and down. Should have done it when we were fitter and younger. In the 50s still but not seeing it happen just yet.
i thought you found a trial. if so i think my best suggestion so far is to rent a van.
We were offered the Crescendo trial in November but we decided to see if Lu177 was a possibility while my husband could still travel to India. Sadly we had scans that showed a lot of discordance.
Best of luck finding a treatment and being able to get to it.
Thank you. I am looking into getting a referral to the trial for a drug Capivasertib. I have not come across before and it is only 90 m away from us. cancerresearchuk.org/about-...
We also have a Sprinter van. It is a cargo van so it is not legal to have passengers in the back but if I needed to get to medical treatment I would put a mattress in it and screw the law. You can rent one but of course never say what you are doing with it. We rented a Sprinter for a move and I loved it so much I had to find one at a good price. They are very common in Europe and I assume in the UK.
Can you do a second opinion? Nowadays you can do it over the internet. It will still cost thousands for the consultation, but you save all the traveling costs. Normally they do it at the clinic or hospital where you are treated. Whether the NHS will even consider that is not certain. Or you might go private in the UK and then get the second opinion.
Just some random thoughts. Dont mind me. I am just a layman. 🙂
We have a good oncologist and two good RO in India. We have an MO and a good RO here. We have had consultations at the Royal Marsden. Not much has come up. The Indian team is innovative and is trying different approaches and gave a biopsy to get more information. The NHS did not like that they got my hubby on Abiraterone. It was not tried before and there is no harm in trying a drug. The NHS does not prescribe it for cost. They gave him enzalutamide and when it stopped working, they will not prescribe another super hormone.
Check his genetic mutation. If one is positive, he can try Lynparza .
This is a tough place to be. I think the doctor may be trying to preserve the relatively well time your husband has left by suggesting you give up treatment. That can seem very cruel if you are not mentally prepared.
I struggled very hard with this because my husband was still "all there." What he lost weekly, and then daily, were functional things. His physical abilities dropped but his mental did not and it was hard for me to reconcile what was really going on. I ended up plugging my husband's stats I to one of those online expectancy calculators and was shocked. However, it was quite accurate (to one day) and that shock allowed me to realize our time was very, very limited. I had that hard talk with my husband. It felt/feels cruel but it also allowed him to have some conversations and get some tasks done. We refinanced the house, for example, in that time. He talked to friends and family where he wanted to touch base. He lasted about three weeks from the point of physical decline/loss of mobility.
My story is not your story, so please just skip over this if it's not where you're at. But I wanted to let you know there are people on the board who have had to make that shift from hope to acceptance. If and when you get there, we are here too.
It is very sad to read this. What is this calculator? I sympathise as my hubby is mentally sharper than I am but functionality is worrying. We have a few things we should sort out but it is difficult to do when he hopes to find the magic cure maybe through the genetics. My attitude is to be prepared for the worst and then everything else is a bonus.
It's brutally hard and I have a lot of guilt. But I would still do it again. He has conversations with the kids he couldn't have had otherwise.
I'm very sorry you are walking this road. It's terrible. I feel like I didn't understand at all the meaning of "the valley of the shadow of death" until now.
Thank you for the link. It is very sad and I do not think that guilt is there really. I need to know what we are facing so I feel prepared. This is a cruel disease for the men and for the families.
I agree with you. Reality is a hard pill to swallow. I want our doctor to be honest. I don't want sugar coated false hope. Seeking different doctors, more treatment that still won't really do much is exhausting.
I am a member of the Lupron failed club and also the Xtandi failed and Docetaxel and Carboplatin failed clubs. I do not appear to have bone mets. I am beginning to experience abdominal pain. Where is your husbands pain.
He has a liver met but no known pain from it. There are multiple bone mets in the pelvis, spine, ribs, humeri, and unlike many men also in the knee, foot, thigh bones etc. The pain varies - this week it is lower back pain, a week ago it was the neck, before that shoulder blade and lower back, right knee, etc. There is a general ache that is felt all over sometimes. You are lucky that there are no bone mets. Where is the abdominal pain?
reallyanywhere in my abdomen, with different nuances according to location.
You should try to get a CT scan quickly and check liver and kidney function blood works. Good luck and take care.
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