Enzalatumide vs Chemo

Hi Cavoo

Yes we are very relieved thank you, as must you be too!  We have also been told that the thing they measure to do with his bones (I can't emember the name!) has decreased massively as well so that's a good sign.  He is startng to struggle with the side effects though, and it is difficult to get the balance right with the tiredness.  We were keen runners before this all started, doing several half marathons and even a couple of marathons.  But he wasn't able to run for 8 months while we were struggling to find out what was wrong, and even walking to the shops caused significant pain.  Now the treatment has eased the pain he has been desperate to run again, but unfortunately with the effects of the treatment even doing a little bit has left him wiped out.  I'm hoping it's just about getting the balance right.  He is on 3 monthly injections but his is called Zoladex, I imagine its similar though.

Regarding the trial, it might be becasue we are at Southampton General which is a big research centre.  We were offered it right from the start.  I would certainly ask about it at your next appointment.  I think you can get some information on Cancer Research UK's website, but interestingly his trial wasn't on there.  We were told that he was eligible and then it was up to him whether he signed up or not, and he can change his mind at any time.  Once he decided that he wanted to go ahead, he was allocated to the treatment group straightaway.

I have been sleeping a little better thanks.  Well I was until Christmas bubbles came up!!  Getting stress from family about that is not really what we need right now.  I hope things are better for you too.  It does feel like a cycle of different things to worry about doesn't it?

Take care :-)

It can be very difficult to get back to exercising after treatment. I found the NHS Choices website very helpful. Go to this page:

https://www.nhs.uk/live-well/exercise/

and scroll down to the bit where it says "Try these exercise routines:". Download Laura's five podcasts and give them a try. It's a bit like being a baby again but it's worth it in the end. I have been doing level 5 three times a week for nearly 18 months now and it's excellent. I'm planning on starting the "Couch to 5k" program after Christmas as I haven't run for nearly 16 years after pulling a hamstring during a half marathon just before I retired. I was running 10k in 40 minutes at the age of 58, but that all fell apart.

You don't need any equipment to follow the Strength & Flexibility program but I did get a doorway fixing pull-up bar so that I could do the full program indoors.

I hope it works for you.

Hi

just read you bit about exercise so will take note of that. 
on the matter of chemo. My hubby has just started a session of six, one every three weeks. So my question is, why are some hospitals not doing treatment?   He has a Covid test before every outpatient clinic.  He is also losing blood and last week had to have a blood transfusion. He is so weak and has fallen twice recently. I am scared to leave him on his own. He is going to the general hospital on the 14 th to have a bladder flush and to look to see where the blood is coming from. To say I am concerned would bean understatement. However, I will say the cancer hospital are doing everything they can. It seems to be the general hospitals as they are the ones with Covid patients. 

Hi My husband had a prostectomy February this year his PSA was 28 and didnt drop below 17 after the op .The consultant said that it had spread to local lymph nodes and that due to Covid he could offer him Enzalutimide and Radio therapy after 6 months on Enzalutimide .Its a very expensive drug £36000 a year its normally given to castrate resistant prostate cancer only but trials have shown it has excellent results with hormone sensitive cancer when given with radio therapy. My husband started taking it in June his PSA dropped like a stone and in 4 weeks was 0.02 today we have had a telephone conversation with his consultant and his PSA is completely undetectable at 0.00.This means that the drug has acted on the cancer cells many of which have been killed off though due to the nature of prostate cancer some cells may just be dormant and that is why he needs RT to kill these rogue cells off .Enzalutimide is often described as a miracle drug and has only very recently been offered as a first line therapy after surgical failure .My husbands pathology was bad his Gleason score was 4 3 with some tirtery grade 5 and his PSA was rising rapidly the consultant said he was at high risk of the cancer returning but now after taking Enzalutimide they have put in writing that his chance of reoccurance is now 1 percent in 15 years .Every mans prostate cancer is different and it is known that when given prior to chemotherapy for castration resistant cancer it is not as effective afterwards .Read all you can about Enzalutimide there are results of recent trials published on the internet .We are so grateful to our consultant for prescribing this drug to my husband the side effects are many and not pleasant but my husband has got on with them and their effects lessen over time .The hot flashes and headache are the worst .I hope this gives you some insight into Enzalutimide it is a wonder drug as far as we are concerned the cancer cells that remain have been weakened to such an extent that the RT should be very effective at destroying those that remain. 

I am so happy to hear how well enzalutamide has worked for you. Continue the journey and best of luck. My first chemo taxotere did not work so going to Jevtana(cabazitaxel) 11-11-2020. Staying posite knowing the seriousness of metastatic prostate cancer. I have been battling 10-2008 so not surprised with any results

Hi all

I am about to go on Enzalutamide in addition to the monthly HT jabs for advanced cancer that has spread to bones. So I was reading this older thread with a lot of interest.

I would really love to know how everybody has been doing in recent months.

Best wishes and support to all.

Hello .Sorry that you find yourself here the group no one wants to belong to but it's a great place to get advice and information on the subject of this horrible disease.I have been on Enzalutimide for 16 months now I was prescribed it along with the three monthly hormone  injection as first line salvage therapy after failed surgery to remove my prostate in Feb 2020. My full details can be found on my profile page which will tell you more about my situation .Enzalutimide has worked like a dream for me four weeks after taking it my PSA dropped to undetectable and there it has stayed ever since .I have also had Radio Therapy too in January of this year .My consultant thinks I'm curable which was heartening to hear and is very pleased with my progress.Enzalutimide is something of a wonder drug for those  it works for and is now being trialed for some other forms of cancer .It has nasty side effects but so far nothing that I can't handle I get restless legs ,brain fog and memory problems ,hot flashes too but everything is manageable.The prescribed  cream I rub on my legs to ease the restless feeling helps greatly and my wife is here to help with my poor memory shes great at nagging me and doing a grand job at remembering things for me .Good luck and I hope your experience with the drug is as good as mine has been my consultant wants me to come off all treatments in either February or June 2022 to see if I really have been cured February being the earliest date possible .

Thank you. That's really great to hear and very positive. Its also good to be aware of the more likely side effects alongside the long list that they give you. I guess the ones I'm most worried about are bone thinning or any heart or liver problems.

I'm keeping active and fit and hopefully positive.

I will definitely ask about restless legs when I see the consultant next week. 

Thanks again and best wishes for your continued progress.  

HI, My husband is in the same place as you. Advanced PC, three monthly hormone jabs - getting enzalutamide for the first time today.  I wish you the very best of luck. And us too!

Hello AsPer 

first time on here ? Like me all on here are here to give help, advice and support plus information where we can.

I’ve been on three monthly jabs for four and a half years, plus enzalutamide for nine months.

Like a good few on here I’m incurable but battling away, you may have been told about the side effects of enzalutamide, I have ups and downs with it. I got blasted with 160mg but it really threw me I had to ask them to drop the dose, to 80mg then build up not so harsh and still does the job.

Hope you let us know how he’s doing takes maybe four days maybe longer to kick in.

stay safe

Joe