Hi - my husband was diagnosed with advanced metatstatic Prostate Cancer (aggressive) just as the virus hit. He has been given Bicalutamide but is about to stop this now that he is having a 3 monthly injection instead. We had a telephone appointment last week saying that he needs 6 rounds of chemo but isn't allowed it because of the virus. Does anyone know if this is the decision made by all cancer units or just some? He has been offered Enzalatumide instead but it was made very clear to us that it is normally given to patients who relapse after chemo & it isn't usually given before chemo. It was also made very clear that if he has it now, he will not be able to have it after chemo. Has anyone else been given this information? Does anyone know what else could be given after chemo instead of Enzalatumide for a possible relapse? I fully understand the reasons for not giving him chemo but am worried that this will have a serious affect on future outcome. I asked the Consultant if it would affect his outcome giving the drug before any chemo & he said he didn't know as they had never done this before. My husband has every confidence in their decision - I am desperately worried.
I had hormone therapy from 2012 to 2019 and once Mets in bones I had enzalutamide. My PSA went up after 18 months so just started taxotere or chemo. I don’t know which sequence is best however enjoyg a good quality of life. Best of luck
I just started June 16 2020 and have 5 more infusions every 3 weeks. I just completed the fourth infusion 8-24-2020. My PSA went up slightly 13.6 to 14.3.. I have been in Lupron-2012, casodex, enzalutamide, Xgeva and originally radiation in 2010. PSA was 2.8 with a Gleason 3/4= 7. Long road and still waiting for cure. I still have albiterone left after chemo.
Take life day by day and be grateful for the little things. Don’t get caught up in what you can’t control. Accept it and make the best of it. When you stop worrying about what you can’t control, you have more time to change the things you can control. And that changes everything in the long run.
like me always good to have a plan B I’ve been told I’am castrate resistant now so there’s a few things they have in mind, like you I want to save Aberaterone till last.
Since enzalutamide stopped working my oncologist did not think albiterone would last long because they are similar so went chemo route which might make albiterone more effective. Glad we have the medicine today for us. Good luck on your journey and stay positive
Take life day by day and be grateful for the little things. Don’t get caught up in what you can’t control. Accept it and make the best of it. When you stop worrying about what you can’t control, you have more time to change the things you can control. And that changes everything in the long run. Jada
In pretty much the same position as you, we found out just a lockdown was starting to ease that my dad had PC thats has spread to parts of his pelvis, ribcage, and arm- complete shock as no symptoms whatsoever, and only went to A&E after pulling his back playing golf.
Its like we have been in a whirlwind- which is great in a way, as all tests and treatments have come in fast, but his last two appointments he has had to go in on his own, due to the lovely covid, so Ive not been able to ask questions
His psa was at 624 at the start, he had Bicalutamide, followed by the hormone implant and at this stage was told we would have chemo tablets
Went back to met the consultant and he came out saying the psa had dropped to 11 already, and wasnt having chemo tablets and was lucky to be offered Enzalatumide
My dad like your husband has every confidence in his team, which is great as keeping him positive
How is your husband finding the Enzalatumide?
Stay Strong x
Sorry to hear that your dad has also been diagnosed with this awful disease, especially with Covid making things more difficult. My husband also had a drop in PSA after being given Bicalutamide followed by his first Prostrap injection - his PSA went down from 150 to 18. He was then started on Enzalatumide which saw his next PSA level drop to 3.4 & after another 4 weeks of Enzalatumide this has dropped to 0.78 - so all good so far. My husband has had little or no side effects from the Enzalatumide which is really good as he is able to live his life as normal - maybe a little fatigue but nothing major.
I do hope your dad continues to respond to his treatment in a positive way - we're unclear whether the PSA drop is from the 3 monthly injections, the Enzalatumide or a combination of both but everything is going in the right direction for us so far. Keeping our fingers crossed that these treatments work for some time to come as they are much kinder than Chemo. Unlike you, we have yet to have an appointment with our Consultant - we have no idea what he looks like! - all we have is appointments for blood tests & appointments with a nurse to be given the medications!
Best of luck for your future treatments
All the best, Kath
Thank you so much for your reply and Im so pleased your husband is feeling good and responding so well to the treatment. Hopefully my dad will feel the same too
Take care xx
I know this is an old post but I am new on here so catching up, and wondered how things are going for you now and what you found out?
My husband's story is very similar. He was diagnosed in September, he is Gleason score 9 and it has spread to his bones. It was awful not being allowed to go with him for all his tests and things when I so much wanted to be with him to support him. We were also told chemo wasn't possible because of covid and were given enzalutamide instead. I was very worried about this after hearing all the stories in the news about cancer treatment being delayed, but they insisted that this was a good thing. They have not told us that he can't now have it after chemo though. He has done well on it so far, his PSA was 160 at diagnosis and went down to 0.53 last time. He has another test tomorrow, fingers crossed it is still low. The side affects have been manageable so far, the dreaded hot flushes are not too bad but I have noticed he is much more tired. I have read on here though that the effects get worse over time, have you found that?
I hope things are going well for you.
Hello- I did really good on enzalutamide and had few side effects. I completed 6 rounds of taxotere 2 months ago and also did well. No hair loss nor nauseousness. I had CT of pelvis, abdomen and che yesterday. Waiting for results tomorrow. I also had a total body scan which showed progressive metastatic disease and PSA went up from 16 to 31.
My oncologist said probably chemotherapy again. I will keep you updated.
I am so sorry that you and your husband are on this terrible journey like us - it changes everything doesn't it?
Yes I agree that the fatigue seems to increase as time goes on but it's still better than the side effects of Chemo. We have now had one face to face appointment with our Oncologist - bit disappointing as it only lasted a matter of minutes but I did have time to ask a couple of questions. I wasn't supposed to be attending with my husband but I went with him and twisted their arm into letting me in as this was the very first time we'd had ANY proper clinician contact & I wanted to be involved!
I said I understood that Enzalutamide would fail in the future (Oncologist confirmed that it would) but as Covid is still around - if it failed in the next couple of months - would Chemo now be allowed? His reply was that it wouldn't fail in the next couple of months. I also asked if we were at a disadvantage being given Enzalutamide instead of Chemo & he said - quite the opposite, if we were a private patient of his with loads of cash to spend - this is the first treatment he would prescribe. I think it isn't usually available on the NHS at the beginning as it's so expensive.
Our last couple of PSA tests have been 0.19 then 0.18 - we have another blood test today with results on Monday - the anxiety never goes away - I dread them telling us that it has risen as this would mean the drugs have failed. More sleepless nights - I am a worrier.
We have been told that my husband will stay on the Enzalutamide until it stops working but then it will never be given again - this is probably the same in your case. In other words if we have Chemo in the future and that fails - we can't go back onto Enzalutamide as it will no longer be effective. Not sure what would be offered instead - we haven't been given any information about future treatment plans.
I hope we both have good news on the next PSA levels.
Take care of yourselves!
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