Treatment experiences with Enzalutamide

Thank you, he is booked in for a biopsy on the 17th July and will see oncology on the 18th. Will keep you updated 

Hello Enya52 .

Can I come in on the question of delaying chemotherapy. Your oncologist may come up with the suggestion that your husband has what is called Triplet Therapy which is a combination of the hormone injection, a second generation antiandrogen plus chemotherapy. An important consideration with this therapy is that the chemotherapy should be started within 12 weeks of initiation of hormone therapy and should also start concomitantly or before the second generation antiandrogens. This protocol has been shown to produce better overall survival and improved time before biochemical recurrence compared to delayed chemotherapy. Your oncologist will come up with the plan for your husband based on the biopsy results but if they recommend Triplet therapy then timing is important. As background reading I have attached a link for you.

https://www.sciencedirect.com/science/article/pii/S1558767324000028#:~:text=Triplet%20therapy%2C%20consisting%20of%20ADT,therapy%20should%20be%20administered%20simultaneously

Hi Enya52

I've just joined the Forum so forgive me for this very late response.

My husband started on Enzalutamide two months ago, six weeks after starting on Degaralix injections every 4 weeks. He was diagnosed with heart failure in March 2023 so it was a great shock, after a PSA of 20, to find that he also had a particularly aggressive form of prostate cancer which had spread to femur, pelvis, hip, liver and lymph nodes. His treatment started before the results of the biopsy were known - partly because the scans were evidence enough and we are fortunate to have a very active prostate cancer service where we live. 

My husband was a marathon runner and still running up hills when diagnosed with heart failure. Despite all the medication he is still jogging (very slowly) up to 4 miles a day. This week, on one day, we managed a 15 mile walk in the hills (I was the one feeling it the next day :-) ) 

We do have our down days of course but we recognise the most important part of this journey is to get up in the morning and tell ourselves that we are going to live this day. 

Hugs and warm thoughts to you and everyone else walking this path. 

Hi Skoda.

Good afternoon sorry for jumpingth in on this post but I noticed that your PSA was the highest that I have seen to date!!!

Upon diagnosis last year my PSA was 1000+ and I was put on to Hormone Therapy which brought the numbers down to single figures.

Like you my PSA has unfortunately started to rise three times in a row in my most recent tests.

I have just had one shot of radiation to my pelvis which is full of cancer and was causing tremendous pain.

This seems to have calmed things down and I was wondering how things were going with you??

Prostate Worrier.

Hi Worrier,

My PSA dropped to single figures on degarelix plus enzalutamide, then 4 months ago it started to rise - 20, 40, 50. I submitted a blood sample last Thursday and see the oncologist next Tuesday, so I will let you know what the last readings were and the any change in treatment. I feel fine with only occasional pains (though I am on 60mg-day morphine) and the expected fatigue, etc.

Skoda

Hi Skoda.

Many thanks for your reply, yes my PSA numbers rose three times in a row as well but only in single figures.

I do hope that everything goes well for you on Tuesday and yes please please let me know???

I have got my next bloods on Friday and then the Consultant a week on Tuesday so I will see if the radiotherapy has helped!!!

Yes I have just come off liquid morphine as my pain has decreased thank goodness.

Prostate Worrier.

Hello enya

Degarelix works on the testes which are major testosterone producers. But thr adrenal glands also make testosterone. So unless that too is cut off, psa may increase.

Another thing to note is what is called castration resistance. Meaning after a certwin durwtion, the cancer develops resistance to androgen.

So the drugs like abiretarone, enzalutamide, darolutamide, apalutamide etc are administered along with the GnRH agonist or antagonists like degarelix , leuprolide, goserelin etc.

Thats what is calles the cab approach, combined androgen blockade.

Also talk to the onco about immunotherapy as well as PARP inhibitors.

Hi Warrior,

Back from oncologist. Current PSA 50.4, so from nadir of 1.1 in Oct 22 after chemo and on degalerix it rose to 6.3 on 8/12/23 and I was started on enzaluteride soon after. The PSA level increased then stayed around 20 until May when it started to rise again: June = 30;July = 40, August= 42, September = 50.

In short the enzalutamide does not seem to be working  as expected and the oncologist does not know why. I will be sent for another scan in the next few weeks to try and identify a source tumour.

Generally my quality of life is good (I'm 76) and I'm quite happy to continue with the medication. I give myself the Degalerix injections. 

I hope your levels remain steady or drop, but don't panic, it seems many men continue to live for a considerable time with raised levels of PSA - I aim to be one of them :-)