PSA Up and Down

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

Ok, well I wouldn't be too concerned and the specialist seems happy.

But there are a couple on here who know a lot about HT, I am sure they will be on soon or possibly tomorrow 

Steve 

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.

Both,

Thanks for the info again, very useful.

Re Doing double. The oncologist did say that the Abireterone was to be used with another drug, but when he started the initial discussion I was so overwhelmed by the info he gave that I must admit that I did not ask about this. However, in my follow up notes for the next consultation re Ab.. and Enz...(that did not happen) I did have this as a question. I suppose my biggest concern would the effects of doing double, i.e. Prostap does make me feel weary and give me the 'sweats' (amongst other things), and both Ab...and Enz...do the same.

Re Darolutamide. I will ask about this if/when I have the Ab...and Enz.. discussion. Thanks.

Re Radioligand therapy. Not sure this will be an option at this time as my bone mets (thankfully) have been the same for the last 4 years. This has never been mentioned, but I will ask however at my next consultation. Thanks for this.

Re Ibuprofen. I did ask about many years ago when I was in the hospital (urology ward) and they said it was OK. For info, I have one kidney doing 80% of the work and the other smaller kidney doing 20%. This has been the same since I was diagnosed (coincidently on the same day I was diagnosed with prostate cancer....not a good day...plus I was also diagnosed with sepsis also on that same day.....). As an aside, I am reluctant to use a lot of Pararcetamol becouase it causes constipation. I have my kidneys checked every 3 months by blood test, and saw the urologist lastr month and they said that there has been no change/nothing to be conserned about.

Regards and thanks again.

Hi !

Abiraterone is to be used with Prednisolone to mitigate some of the side effects you may have from Abiraterone. Normally you have 5 mg or 10 mg of Prednisolone.

Yes, there is side effects with Abi as well. Then of course, depending on the person, side effects range from light to worse and like with hormone therapy it’s often in the beginning they manifest the most and then some of them becomes less.

Probably they don’t see you as a candidate for radioligand therapy no. There are many studies and trials underway in this area and more to come I believe.

Best wishes - Ulf