Journey with Enzalutamide

User

Posted 14 Oct 2019 at 21:40

Doctor phoned last Thursday to say they wanted another scan and expect another phone call. They phoned Friday for a scan today.
they wanted a SPECT CT scan. They explained it to us as a bone scan and then a CT scan giving them 3D images. Sounds amazing but not something we had heard of. The images were sent through to the doctor while my husband was still there to agree they were clear images. PSA 2 weeks ago was 14 - still going up at about the same rate. We go back to talk about the trial on Wednesday.

User

Posted 16 Oct 2019 at 20:55

Totally devastated. Scans show at least 4 new areas of cancer so not suitable for trial. They want to stop Enzalutamide fairly soon. There is a possible trial TRITON3 but only about 25% suitable so we will talk about it otherwise it's Carbazitaxel but that seems about it.

User

Posted 16 Oct 2019 at 21:33

So sorry to see this, obviously not the sustained response what you were hoping for.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 01 Nov 2019 at 21:21

Told that my husband doesn't meet criteria for Triton 3 so Carbazitaxel is only option. We told doctor how devastated we both felt with being offered trials and then not even having the tests to see if my OH qualifies. Have been told we can have a week to see if they can come up with any trials that my OH would be eligible for. We don't want to start Carbazitazel if there are other options as we were told that is the last treatment on NHS and unlikely to work for any length of time after the Chemo finishes.As OH is so well we asked about delaying treatment but told that not an option as PSA rising fast.

User

Posted 02 Nov 2019 at 09:08

I am sorry to hear your news.

I too have been in your situation many times when a treatmrent no longer works and you need to move on to to the next treatment.

I was particularly annoyed when Abiraterone stopped working for me, as it proved such an easy ride.

Although I have not been on the Cabazitaxel bus yet, it certainly looks like being one that I will likely need to travel in the future. When, I do not know

So as long as there are treatment path options available, that is good.

Very best wishes

Dave

"Incurable cancer does not mean it is untreatable and does not mean it is terminal either"

User

Posted 03 Nov 2019 at 11:04

Hi,

Sorry to hear the news that the trial is not being offered now, not nice to get hopes built up just to be shattered.

I too have been put through for trials, if the professor in charge agrees. It will be enzalutamide along with talazoparib, which is used for metastic breast cancer, or a placebo.

Hope your OH gets something soon.

Sandy

User

Posted 03 Nov 2019 at 22:02

Hi,
Sorry to read about the treatment and trials not going as they should. Likewise I was on enzo for a while which didn’t work and now on cabataxal. I found it heavier going with SE than the docataxal. I have fingers crossed that this does slow things down but you really never know how it’s going the work out. I must ask about 5he Tition 3 trials. Iam trying to get on the Neptune trials.
Wish you and OH all th3 best.
Steven

User

Posted 10 Nov 2019 at 08:15

Thank you for replies. I had just felt devastated after 2 trials were withdrawn. Further phone call from hospital explained can't do Triton 3 as my husband has had both Abi and Enza but this still might be possible later after a different treatment. There are no suitable phase 3 trials but they will refer to the phase 1 trials team and in the meantime he stays on Enza. PSA had only gone up from 14 to 18 in 2 weeks so they think Enza still having some effect.

User

Posted 10 Nov 2019 at 09:50

Hi,

It's not a nice feeling thinking your going on a trial only for it to be withdrawn. I was put through for a Talazoparib trial only to be told that because I had Zoladex prior to chemo I couldn't be put forward to it.

Started Enzalutamide, 160mg per day, on Friday. Been told that it has a good effect on PCa and may keep working for a few years.

Zoladex to continue, even though it is starting to lose its potency, along with Enzalutamide,

Interested in others experiences with Enzalutamide. Keep the faith, hopefully it works out for your OH

Cheers

User

Posted 11 Nov 2019 at 21:57

Hi saunders
My OH has been on Enzolutamide since last November and although now it is no longer holding down the PSA it has worked well with minimal side effects. He is also on Zoladex. I think it can work well for several years for some people so hope that includes you.
Best wishes

User

Posted 15 Nov 2019 at 14:40

Stay strong. We've been in a terrible funk and both said we need to snap out and be thankful there is something, anything offered. Watching your spouse go through this is hell, and not being able to do anything sucks too. We started alternative options in June with juicing through a video we watch on chrisbeatcancer.com. We don't see it as a miracle cure, but we feel the nutrients and anti cancer foods we are pumping into him is keeping his health otherwise very good (to keep him eligible for trials). He still works, exercises, we just took an 11 day holiday in Europe, etc. Thinking of you both!

User

Posted 28 Nov 2019 at 23:14

This is now the end of Enzalutamide. Not sure what will happen next. Had been told they would keep him on Enza while looking at trials. Saw a doctor yesterday who said no more Enza and as far as he was concerned it was a "no brainer" my husband should go onto Cabazitaxel and not consider trials. The previous doctors we had seen had all suggested we explore all possible trials and keep Cabazitaxil as the last resort. We have been told that is the last standard treatment. As my husband is well we want to delay Chemo as long as possible as we have been warned that most men have to stop before 10 treatments as not well enough to continue. We are going to talk to the trials unit tomorrow and see what they say.

User

Posted 29 Nov 2019 at 06:06

I've just started my enzalutamide journey, I meet with oncologist next week to see how it is working.

I hope you and your OH get the treatment you require. Just being nosy here but has the enzalutamide stopped working or being less effective.

Sanders

User

Posted 29 Nov 2019 at 07:40

Hi Saunders
It depends which doctor. PSA has been going up for months now. Scans had been stable until last ones CT and bone scan showed just one new area BUT then had SPEC CT scan not had before which showed 4 new areas of concern. One doctor said Enzo still working mostly but Wednesday different doctor just said no more, I would say less effective. Best wishes for yours and hope it works for years for you.

User

Posted 11 Dec 2019 at 20:49

We are looking at a trial Cellcentric early stage CCS 1477 01
Should find out soon if he is suitable. They wanted to do another biopsy but the CT scan done today can't identify any lymph nodes with cancer so told only possible biopsy would be a bone one and don't advise so see what they say tomorrow. The previous trial they were monitoring one lymph node for the trial. I think it was 1.7 cm and if it has now gone (or nearly) that must be good news. Had long chat with the consultant radiographer who was supposed to do the biopsy who said she would have been doing the measuring as that was her job. We both felt that was positive now to find a way to treat the bones. Hopefully someone is working on that! As my husband is still feeling fit and healthy we intend to enjoy Christmas and then face whatever the New Year brings.

User

Posted 12 Dec 2019 at 09:22

Looks like some good news in there for you both. Hopefully you'll both get the right treatment going forward.

As you know I started enzalutamide, had my first meeting with oncologist last Friday and surprised to find the PSA down from 5.4 to 1.6 in only 4 weeks.

Anyway have a great Xmas and all the best for the new year.

Sandy

User

Posted 11 Jan 2020 at 07:36

Thank you all for your comments, I’m hoping to start on Enzalutamide if funding agreed, as PSA shot up last year, 3.9- 8.8- 17.9- 21.4- 80.8
I was looking to see how people coped with It.

Chris

ps, 14 years since surgery, and just booked holiday for 2021!

Edited by member 11 Jan 2020 at 08:12 | Reason: Minor correction to numbers

User

Posted 16 Jan 2020 at 14:44

I've just started on enzalutamide with a PSA of 1,2. Going back to the hospital in two weeks for a check-up. Hope everything goes well.

User

Posted 23 Dec 2022 at 06:49

I have taken Casodex for years and PSA stays around 3.7. No operation. Now 79 years old and swimming a mile a day. Feel strong and doing well. Cheap Casodex - https://onlinecheappills.com/bicalutamide.html

Edited by member 31 May 2025 at 18:36 | Reason: Not specified

User

Posted 03 Jan 2023 at 10:26

Hi,my husband has started taking the tablets 3 weeks ago but he is not coping to well,Very down in the dumps. Can’t think about food,, We do see the Oncologist next week so hope he can help.I was wondering if you had any side affects at the beginning ? Thanks

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