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’ve been on Enzalutamide for around 7/8 weeks now, I’am a devil for side effects, with me it makes me more tired plus smaller appetite and bits of bone pain mainly shoulders, there is a kind of fuzzy ness sometimes watching TV or to others that have had chemo it’s called chemo brain, where you have loss of memory not severe but annoying.
I speak face to face with either the specialist nurse or the oncologist at Salford Royal their good people, I see them again on the 27th this month. If ever the Enzalutamide stops working ( that was plan B ) there is a plan C plus there are new trials out there, one I was offered but declined which was Enzalutamide and radium 223 taken together, the last named as a few on here knows is for bone pain, trouble is it only lasts for around 8/10 months. But there are other trials.
I’ve mentioned my wife worries constantly especially with COVID when any shopping is done, everything is wiped with a sanitised tissues, plus we wash when coming back from a shop and after doing the food, then wipe down handles etc. Maybe a bit paranoid but peace of mind.
Always try and go with your other half, my wife’s my official carer so is allowed to all visits, but that should go for any married couple.
Take care stay safe.
Hello Joe-I took enzalutamide and it worked great for 18 months and then went to taxotere. I had six sessions every 3 weeks and completed 8 weeks ago. My bone scan showed progression; PSA went up from 16 to 30; CT showed adrenal gland tumors shrunk in half. My oncologist wants to biopsy the adrenal glands to see if it is lung mets. We will also change chemo to Jevtana since taxotere didn’t work. Always a new turn in our therapies so hang in there. Jada
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.
Thank you for the info. I had to smile about your 'chemo brain' - i think my husband has that and he has never had chemo - perhaps it's his age then!!!
You are very lucky that your wife can attend appointments with you - we are in Oxfordshire (although being treated in Bucks for some peculiar reason) - and it is made very clear to us that my husband has to attend alone. He does see a nurse face to face each time he goes for his Enzalutamide tablets but I have to wait in the car outside.
Since being diagnosed in March, other than seeing a nurse once a month for his tablets, we have only had one very quick face to face appointment with our Oncologist - even my husbands awful diagnosis was given to us by telephone.
We are trying to be very positive about Enzalutamide along with 3 monthly Prostap injections, but I think in the past Chemo was given first - hopefully this was just on the basis of cost and not effectiveness.
It would be nice to know what future plans are - perhaps we can ask when we have our next appointment at the end of January (via telephone again unfortunately).
I don't think you are paranoid at all over cleanliness routines - just very sensible!
Hope your side effects get better over time!
I went on a trial called stampede in 2016 because my scores where so high, PSA 893 Gleason 9/10 stage 4 with bone mets after chemo and radiotherapy Plus prostap ever three months which is now combined with the Enzalutamide, You mentioned expense the cost to the tablets are £25 each so not that cheap.
I got recently diagnosed type 2 diabetes which I take tablets for plus other problems, but hey still fighting away, trouble with chemo it blocks up some of the arteries makes it difficult to have it again.
It’s a pity your not his carer then you could attend meeting, having said that most wives go with their husbands into meeting or whatever all have masks on though.
Take care Stay safe
I feel so bad for you that your husband was told the awful news over the phone :-(. We are in Hampshire so not that far from you but it does seem different. I was stopped from going into any of the tests with him which was hard enough, but it did manage to get in for the consultations, but only once I had permission in writing. In our experience the urology and oncology departments were happy for me to attend but it was the staff on the door who stopped us. We were told the news by our specialist support nurse face to face, and she then arranged a face to face meeting the next day with the oncologist which I also went to. We now have 4 weekly video calls with her to review the enzalutamide, which is nice as I can join in with no problems and also nice to see the face of the person we are talking to! They then send the tablets by courier so we don't go to the hospital at all. Family in Norfolk know of friends who have different experiences too.
His test on Friday has come back with a PSA of 0.08 which is a massive relief. We were very worried as the pain in his ribs has come back so we were dreading the PSA going up or something. Like you mentioned previously I am also a worrier, never seen 3am so much! Every new twinge brings new worry. So we don't know what has caused the rib pain to return but we have a video call on Wednesday so hope to find out more then. Interesting that Joe mentioned pain in his shoulders from taking it, so it may be a side effect of the tablets rather than the cancer itself?
It was reassuring to read what you were told about about enzalutamide being given to private patients. We haven't yet discussed what happens next. So many treatments mentioned on here it's baffling! Have you been offered any research trials? My husband is signed up for one called ATLANTA but he has to be on the hormone therapy for 5 months first so we have to wait for that. Meanwhile he has a questionnaire to fill out with some very personal questions!!
Fingers crossed that your next results are good news too.
Like your hubby mine has spread to his bones. We live in Wales. Hubby has had prostate for a number of years. He has been self catheterising for nearly a year now and for months has been bleeding. He was supposed to have a urology procedure a month ago but due to Covid it keeps being delayed. He was told that he needs this procedure doing before he can have chemo. However, on Friday his Oncologist phoned here from Velindre and asked him to come to clinic on Monday with a view to starting chemo. Well, he went to clinic yesterday and today he starts his chemo. He was also told yesterday that he needs a blood transfusion in a few days. It has been decided that it’s a risk but he really needs the chemo as Urology are now saying he will have to wait another four weeks before they can do the flexi systology to look in the bladder flush it out and see where the blood is coming from. So it’s just too long to wait and today he starts chemo. Sorry it’s a lengthy post but basically what I wanted to say was look around because people who need it are getting chemo in Wales. I am currently recovering from a hip replacement and yes, I am going to get better but I am really struggling to look after hubby and myself. Feeling sometimes as though I can’t do this anymore but then I remind myself what hubby is going through. I just worry that he won’t survive the chemo. Is it radical? Is it going to be tough on him as he is very weak. There seem to be so many things going on with him at present. thanks for listening.
What an amazing result of your last PSA test - you must both be so relieved. My husband also had his latest PSA test result yesterday - it is now 0.12 - so still heading in the right direction! Is your husband also on 3 monthly Prostap injections? You do seem to have much better care than we're getting - perhaps it's because your husband was diagnosed outside of the worst lockdown restrictions whereas we were right at the beginning - who knows.
We haven't been told anything & certainly there has been no mention of a possible trial - perhaps we can ask about it at our next telephone appointment in January - we would jump at the chance to join. I did think that all trials had been put on hold for the time being. I have a daughter-in-law with stage 4 cancer who was told that if her last treatment fails, the only option left would be a trial - but they are not happening at the moment because of Covid. Perhaps they are starting again.
Where abouts would you be treated when on the trial? Are you definitely enrolled or do you find out later on if you have been accepted or not?
Hope you have slept better over the last few days - I only had 3 hours last night - can't seem to shut my brain off!
By the way - my husband has bone mets also, including ribs, but he has never had pain from any of the areas so far.
I am so sorry to hear the struggles you are trying to cope with at the moment. I'm sure you and your husband will come through this tough time. My family have been through some terrible times in the last few years but when all hope seemed to be lost - things improved a little.
My daughter-in-law was diagnosed with stage 4 cancer nearly six years ago - my grandson was just a baby at the time. Five years ago she was given only a short time to live but she is still fighting on - there is always hope no matter how bleak things seem. There are new treatments being found all the time so please hang on in there - you are not alone.
Sending you a virtual hug - be strong
You are in great hands in Velindre CariRio. Hope everything goes well for you and hubby. Keep exercising that hip and you will be fine 10 years after mine now and apart from the scar wouldn't know I had had it done. Total Knee Replacement was a different matter a lot longer for recovery from that took a good 6 months to get anywhere near back to normal with that whereas with the hip 3 months and I was pretty much OK so keep doing the exercises as often as you can and you will be fine. All the best to you. x
There are different grades of chemo, obviously they like to use the high dose to kill th cancer cells, but that can be reduced according to the fitness of the individual. They would not administer the drug if they thought it was fatal to him.
The first few sessions are the hardest then it gets easier, always watch his temperature, as I put it over 38 not great, it happened to me and I’am pretty strong and resilient. I’ve had this for four and a half years, my my who is a lot younger than me, left her job to be my official carer. The stress it puts on you ladies and believe me I see it in my own wife ( and read about many others on here ) is immense, I write often telling them what a great job your all doing, without your support it would be a very lonely thing for us to tackle.
I realise it’s us that are stabbed, poked, prodded, scanned and x rayed a zillion times, but personally, I would do it all again just to be with my wife.
Hope your hip improves. Be positive and stay safe.
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