Background. I was diagnosed (metastatic) in June 2019 starting with a PSA of 1916. It went very quickly down to zero-ish, and then climbed slowly to 5.8 by July 2023.
However over the next quarters, my PSA went down from 5.8 to 3.7, then up to 5.3, then down to 4.4, and then up to 6.3 (July 2024). Has anybody had a similar experience and has understood why this happens?
Hi Brockwell and welcome
I presume that u are on HT indefinitely, you've done ok if the PSA originally 1900 in 2019.
I think that small fluctuations are ok when on HT but especially when so high originally.
HT is not my strong point hopefully others will post with more info. Also has your specialist said anything about the fluctuations?
All the best
Steve
Steve,
Yes I am on HT (Prostap) and have been on that for approx 2 years now.
The specialist has not been able to give me an explanation, hence my contacting the forum. When I pushed him for an explanation he says that he is not concerned overall as the PSA is still low-ish, but just says that I am 'responding well to treatment'. He had no explanation as to why it would go up and down.
Regards
Hi !
I can understand the frustration of having a PSA that is like a small roller coaster. As i understand your’e on hormone therapy. I think most materials refer this up and down as more of a inflammatory sign. But just a thought
Have you ever had a discussion of adding Abiraterone to the mix. The STAMPEDE trial showed significant evidence of longer control and remission when being on this double. And I think it could be good to perhaps add it before you risk the possibility of growing resistant. I know it’s ’approved’ for persons with metastatic but hormone sensitive prostate cancer.
With Abiraterone to the mix we are talking total Testosterone suppression because then glands like the prostate will not able be able to produce its own androgen (e.g. making its own Testosterone to feed on).
I would think you’re a good candidate for this dual therapy so I do really recommend you to check.
Best wishes - Ulf
Hello brockwell . Don't forget that none of us are medically trained but I agree with Ulf that this looks more like an inflammatory response. From what I have read you were diagnosed about 5 years ago with multiple bone mets and originally put onto Firmagon and then switched over to Prostap a couple of years ago, but the only other treatment has been chemotherapy. If this is the case then you still have a prostate. There are different types of prostatitis, both bacterial and non bacterial, acute and chronic, symptomatic and asymptomatic. Have you had any pain, discomfort, changes to urinary flow or frequency in the last year?
The Prostap is keeping things in check at the moment as evidenced by the consistent PSA levels, as opposed to a rising trend.
Things have moved on quite a bit in the last 5 years in terms of scans and treatments so more is available and Ulf makes a valid point about whether something like Abiraterone might be useful.
Thanks to both for the replies.
Re Abiraterone. When I went up to 5.8 at the start of the see-saw, the oncologist gave me the (thick) leaflets for both Abiraterone and Enzulutamide for me to review and then decide on the best option at my next consultation (in 3 months). However... because my PSA then went down we put this decision on hold until my PSA rises significantly. My personal view was that Abiraterone was my best option because the Lancet said that Abiraterone before Enzulutamide was the best option. There may be other drugs soon?
Re Prostate. Urinary flow is still slow, but this has fluctuated since I started. I have tried to not drink in the evening so as to reduce the need for me to get up in the middle of the night....this does not always work and I seem to get into a pattern of needing to get up....so my solution is to occasionally take a couple of Ibuprofen just before I go to sleep so as to break this need.
Hi !
There is lot’s of new research and I know that Alwayshope has read up on something called BAT. Then of course there is lot of research in immunotherapy (antibodies, CAR-T and etc) and then of course in radioligand therapy (Lutetium, Actinium and etc.)
As your’re still hormone sensitive I would look into Abiraterone in order of total suppression of Testosterone. The results from STAMPEDE trial showed really improved results when doing double compared to Hormone Therapy only.
Best wishes - Ulf
If you are not experiencing any difference in flow etc. since initial diagnosis then personal opinion is to leave well alone. I am not a big advocate of antibiotics unless absolutely necessary and bacterial prostatitis can be difficult to identify and treat - plus you don't know if this is the cause of the fluctuations. Abiraterone before Enzalutamide is mainly down to choice unless you have a co morbidity which might make one of the drugs less suitable. The latest hormone therapy in the series which has been approved is Darolutamide. Cancer cells are initially very heterogenous but become less so as time goes on and they get used to the hormone treatment. The cancer cell lines which become resistant to Abiraterone also show the same resistance to Enzalutamide which is why the next line of treatment is usually something which works in a different way if the PSA starts going up again. This could include radioligand therapy like Lutetium 177, Radium 223 for bone mets, PARP inhibitors, immunotherapy as well as different types of chemotherapy....... The range has expanded considerably with plenty at different stages of trial. They are also looking at ways to try and either increase the time to recurrence by employing intermittent HT for those who achieve negligible PSA or trying to resensitise the cancer - one technique being the BAT (bipolar androgen therapy) which adds a course of Testosterone therapy to the ADT for men who are asymptomatic but this is still at the trial stage.
Have you checked that ibuprofen is OK for you. My husband has CKD thanks to the prostate cancer and he has been told to avoid NSAID'S and I read that you initially had kidney issues at the start of your journey.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2024 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007