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.
sorry about your news, it’s never a good time especially with this virus about.
As I have stage four incurable PC, I was given bicalutamide to lower my PSA, then chemo then radiotherapy, I’am now on prostap every three months. If the prostap stops working and my PSA goes up, then there are drugs like Aberaterone Enzalatmide, ( as you mentioned ) plus some new ones I’ve read about.
If your husband has underlying conditions eg bad heart or liver kidney, chemotherapy would not have been offered, I will say it’s the best way to attack this disease, the radiotherapy after helps shrink the tumour ( Prostate ) to help that bit more. Chemotherapy can effect everyone differently, it does knock you for six, but it’s the best way to go.
what was his PSA Gleason and stage ? They should have told you all this, also if it’s spread anywhere like mine has gone into my bones,. They are starting to give treatment again do not know where you are but ask other hospitals if they are treating patients.
Hi Joe - thank you for this. My husbands PC has also spread to his bones - his Gleason score is 9 and Stage 5. He doesn't have any other conditions - we are both very healthy and have never needed the NHS before. It seems like the first time we need them desperately we can't have the treatment we need. We have never seen a doctor - everything has been done via telephone which makes it even more difficult. We were told that he needs 6 cycles of Chemo now & this is by far the best option - however it has been refused because of Covid. If this is the decision throughout NHS England then we have to accept it - I'd just like some reassurance that giving Enzalutamide instead will still give him the same chances. He CANNOT have it again after Chemo.
Sorry to hear about your husband's condition but welcome to the forum. I hope we can give you the support you need.
The three monthly hormone injections should hold the cancer at bay until the current crisis has passed and then he might be able to get the chemo he needs.
I was Gleason 9 but the cancer was still contained in the prostate (T3A N0 M0) so I only had hormone treatment and radiotherapy.
Good luck with your journey.
i go on lots of different web sites to find the lastest drugs etc for battling this, the one you’ve mentioned is just one of many out there, but if the PSA is down and staying down then it’s ok till the chemotherapy which I strongly advise.
have you been in contact with your doctors about when chemotherapy will be able to be administrated ? Also there’s a tablet you can take called Alca D it strengthens the bones I take it but only available from the doctors, plus you need to mention if this can be taken before or during chemotherapy.
As I’am a 9/10 Gleason I had a PSA of 893 which dropped to the lowest point being 0.04 its back to 3 but took four years to do this, so all is not lost.
Hi Joe - my husbands PSA was 150 at diagnosis - he hasn't had another test. He is supposed to be having another blood test prior to starting Enzalutamide but the whole system seems to be a shambles - Hospital sending an electronic form to GP - GP surgery insisting they've never received it - seems it went into cyberspace just as our prescriptions have so far. When I asked the Medical Oncologist when we are likely to be given Chemo he said he had no idea. When I asked if it could be detrimental to have this drug before Chemo he also said he had no idea as they'd never done it before. This is why I joined this forum - we are having trouble getting anything from the Hospital - they've shut most of the department down and re-deployed lots of their staff making it difficult to find someone to speak to.
You've been very helpful & I appreciate that
Hi just try the nurses on here, send them an email you will see where to send it, they usually answer in a few days. At least they may help sometimes they jump in on conversations if people are struggling.
Give it a go you cannot lose anything by trying,
Some hospitals are starting back treating cancers so check in your area to see if there are any near you. Remember you can elect to have treatment anywhere you do not have to stick to the hospital you have been talking to. Check with your GP in the first instance. There are also some charities that have mobile chemo units so it may be worth checking if they are giving treatment at the moment too.
You can also call the specialist prostate cancer nurses on Prostatecanceruk. If you get onto their website you will find their number - its an 0800 number so doesn't cost from a landline, Sorry, I usually have the number to hand but for some reason can't find it at the moment. They are open for phone calls Mon, Tues, Thur, Fri from 9am until 5pm and on Wednesdays until 6pm. Give them a call and see if they can help.
Hi The reason chemo is offered before arbraterone is cost. The stampede trial results found that while early use of chemo does help delay the spread of the cancer arbraterone is as good if not better. As part of the stampede trial I have been on arbraterone for 7 years now and so far I am doing ok.
The consultant is also wrong because I have never had chemo. In those days it wasn't used as an early treatment.
Hope this helps Best of luck.
Hi Joe - thank you for this. I will ring Prostate Cancer UK later to get more information. Your reply was what I was hoping to hear. I do understand that we are fortunate to be offered this drug & that it's far kinder than chemo. I just want to know that it's a good alternative to chemo & not a second best option. You have given me hope which helps enormously at the moment.
Hope you have many more good years on your treatment
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