Huge increase in psa

Hubby diagnosed Nov 2021. psa 600. Mets to bones and lymph nodes. Started Firmagon psa after 2 months 8. Started docetaxel chemo. After 6 sessions, cancer shrunk and stabalised. Went straight into more chemo, Cabazitaxel. Had 4 cycles. 3 weeks ago psa 33, today it’s 150. We have new Dr, old one did not want to do psa until 7 cycles completed. We see new Dr in 6 days time. Question is have we got 6 days to play with if psa is increasing by this amount, and what will it be in 6 days time. Bone scan last Friday showed new Mets. Have ct scan on Thursday. Worried sick. I know I shouldn’t say this but I want to bloody murder our old Dr for telling us “ I’m treating the cancer, not the psa”.

[Izzygirl1]

my husband was diagnosed in June. Just finished 2nd dose of Docetaxel and he’s on Lupron and Darolutimide. Doctor said if that stops working they have a lot of other things they can try to get him in remission. I’m sending you love and ((HUGS)). I know how scary this is for you and your husband but stay hopeful !!

[Hidden in reply to Izzygirl1]

Hi Izzygirl1, It’s a living nightmare that you can never fully wake from. My heart goes out to all the brave warriors, and their family members who are going through this.

[lcfcpolo]

Hi. Your a great wife and advocate. I think you have 6 days unless any other medical needs develop. Please ask about adding Enzalutamide, Zytiga or Darolutimide. Good luck

[Hidden in reply to lcfcpolo]

Thanks for the supportive reply. Really appreciated.

[meowlicious99]

Tough situation.

What did the Oncologist say about the PSA rise.

Post chemo PSA surge is not unexpected though. yea? Not sure if your husband is CRPC.

[Hidden in reply to meowlicious99]

Hi, it’s a huge increase, and we had a bone scan last Tuesday that showed his cancer had spread to more bones. Have contacted urologist to see if appointment can come forward. He knows about psa rise, but does not think he needs to see him until next Monday. By then we will of had ct scan and he will have results. Getting dental X-ray tomorrow for meeting on Monday too.

[MateoBeach]

He is/was not treating the cancer optimally unless there is an AART drug included in his regimen, such as abiraterone, enzalutamide, apalutamide or darolutamide. One must be included along with ADT injection and the chemo, making it Triplet therapy, the current standard of best care.

[Hidden]

I know, we asked for triplet therapy at the start and oncologist said no not now. Have it later!! We are in France, so nowhere near on the ball as they are in USA or UK.

[meowlicious99 in reply to Hidden]

Triplet wasn't really a SOC until very recently. As a fellow caregiver I understand the regret and self blame that comes for 'should've pushed for X and not Y' . I understand that feeling, personally has been the hardest feeling to deal with.

Have you had any genetic tests done? I've heard of people getting PARP inhibitors at the beginning of their therapy .

[Concerned-wife in reply to Hidden]

it was a doctor from France who lead many of the newest prostate studies. gustaveroussy.fr/en/karim-f...

[spw1]

We are in the UK. After 4 infusions of Docetaxel, my husband's PSA rose from 99 pre chemo to 468. Then the MO agreed to change to Cabazitaxel although I had suggested to do that after Docetaxel 2 when it was clear that symptoms were getting worse and PSA was rising. My husband's MO has agreed to do three infusions of Cabazitaxel (2 done) before deciding on whether it is working or not by doing scans. So far symptoms are much worse and there are more bone mets incl 3 on the spine that were not there before chemo was started. I do not think that you need to wait for 7 Cabazitaxel to decide - it all depends on symptoms and scan progression added to the PSA. PSA is not irrelevant.

[Hidden in reply to spw1]

Hi spw1

2 am in the morning and as usual I am too worried/ upset, and yes angry to sleep. This is my time of the night to cry, whilst the love of my life sleeps peacefully and for a short while he is not living the nightmare too.

Can you get a scan before the 3rd Cabazitaxel infusion to see if it has spread further. Our new urologist said as soon as he saw our psa numbers go from 8 to 33 to stop chemo, as not working. Our Dr who did bone scan also said change treatment as chemo not working. In less than two weeks since visit to him, psa increased to 150, bone scan shows new Mets, ct scan tomorrow to see if it’s spread to soft tissue. Wish we had asked for bone scan and ct scan after first 2 Cabazitaxel infusions. If we had we would of known then and there that chemo had stopped working. Stay strong.

[spw1 in reply to Hidden]

Hi GinnyGinGin, I am so sorry to hear that. I hope and pray that there are no soft tissue mets in the CT. I am usually awake at 2 or 3 am worrying too; I have to say a mantra to stop the churning thoughts. which sometimes works. We need options for the men for whom the SOC is not working well enough. We simply have no choice to do genetics on the tumour unless a trial team does that. Marsden almost offered but then insisted on us doing at least 3 cabazitaxels and I do not see what one more will do. Best wishes to you and take care. To look after your love well, you also need to look after yourself.

[bassboy]

You are a man and very caring your mate is very lucky to have you at his side please do not be offended by what I say but at 90 years and a long time in this battle I think that your Dr has a point when he says he is treating the cancer not The P.S.A. Bassboy

[Benkaymel in reply to bassboy]

But as Mateo said, he is not treating the cancer optimally unless there is an AART drug included.

[cesces]

Your first doc is probably right. But its a $20 test.

It might even show PSA increasing during treatment.

He doesn't need it. But maybe you do.

Go get general second opinions and replace him at a time of your convenience. But not in the middle of treatment.

Take a look at lef.org and see if you can buy the test on your own.

[pilot52]

You are in France and do not know your flight route. Contact Ishita Sen at Fortis Health or Consider Germany for Lu-177. Ishita will perform it pre chemo. Tell her Dad from Macon Ga asked you to contact her. If your husband is PSMA avid as myself Lu-177 saved the bacon here in Georgia. I am available by messaging if you need me. Best to you guys. Stay an advocate and push these doctors. Research doctors to me seem to be on top of things which is understandable....

[Kenn2017]

I started medicating myself on my own with doggie medicine, (fenbezabole) My PSA dropped by more than 50% the first week and then continued to decline. It may not work for everyone but I am on it on a daily basis. And no I have not informed my drs. of this, they are just pleased it is down and I continue forward on lupron and xtandi.

[anonymoose2 in reply to Kenn2017]

Interesting 🤔

Can’t hurt what I see. If anything no more parasites 👍

[NecessarilySo]

I can't say much about drugs for CRMPC. Cabazitaxel website says it is for CRMPC. It shows how mean this monster can be. The Firmagon seemed to work and Docetaxel seemed to work at least for a while. Did the Cabazitaxel chemo come in addition to those or to replace them? I'm no doctor but i would say that even if you have CRMPC it does not mean you don't have CSMPC also. Importantly you need to lower testosterone with Lupron with Xtandi. i personally think dietary lycopene intake and other non-drug treatments like heat will help.

[Hidden in reply to NecessarilySo]

Hi NecessarilySo

Not sure if the chemo worked at all really, psa 600, started Firmagon, psa down to 7.95 after a couple of months. Then started docetaxel, after 3 cycles psa 1.42, scan showed improvement to mets and lymph nodes.After 6 and final cycle back up to 8. Scan showed mets and lymph nodes had stabalised. Was this the addition of the chemo or was it the continuation of the Firmagon? They wanted to continue with more chemo rather than a second generation drug. Expecting to get one of these drugs on Monday when we see Urologist. Just hope it has not spread into soft tissue, ct scan tomorrow, so will know results then and there

[Izzygirl1 in reply to Hidden]

It's just so much to deal with! Hope all goes well with scan!

[bglendi53]

Kinda sounds like me. Had the Radical Prostatechtomy in April 2020, 14 weeks later my psa is at 165. The oncologist put me on Erleada and Lupron, PSA was down to .20 by March of 2021. Then it did nothing but rise all the way up to 33 by May of this year. Put me on Xofigo for three months, then switched me to Zytiga on July 1 this year. Had a small drop to 24 after the first month, end of July. Now it has climbed to 120 as of a few weeks ago.

I'm actually going in for a Bone Scan tomorrow followed by the CT Scans on Friday. Insurance wouldn't pay for the PSMA-Pet. More than likely they are going to find more mets and we'll see what the Oncologist says. I know they always say the PSA isn't "everything". But they don't even want to speculate in the mean time about the PSA going through the roof.

I'm pretty sure the next step for me is going to be chemo.

[Hidden in reply to bglendi53]

Hi bglendi53

Bone scan tomorrow and ct scan on Friday. At least they are close together and you will find out results quickly. Not sure what happens where you are, but here in France after any bone test, ct test we get told what the results are and get given the physical paperwork to take to our specialists. Good luck for these tests. Keeping eberything crossed for you. Stay strong, stay as positive as you can

[Hidden]

Thanks bglendi53

Will look at this video tomorrow

[bglendi53 in reply to Hidden]

There's 2 days worth, I'm pretty sure Dr. Kwon is on the second day.