Abiraterone or Enzalutamide

I have 4 pills, all at once, once a day.

Hope you're keeping OK.

Great news, it's such a  good feeling knowing your treatment plan, it gives you a sense of control and hope. good luck Dave.

Thanks Paul.

I think it’s so important to feel in control. The best advice I received when I was first diagnosed was to research and understand the disease. 

Good luck to you too.

Cheers

Dave C

Makes me think it might be better as I'm forever putting the timer on my phone to remind me  I'll run it by the oncologist first though. I had my prostate removed back in 2018 and a lymph node removed, all clear after regular scans then a small mass wad spotted on my tail bone. I had stereotactic radiotherapy which cleared it and now I have have a few spots on my pelvis and spine (hence the hormone treatment Prostap 3 on xtandi) which has been caught early but still doesn't take away the worry and anxiety! 

Hi Chris and everyone. My husband has stage 4 prostate. Diagnosed in 2016 (age 51) .. back then it was T3. He is now on Abiraterone since April 2019 due to metastasis in his spine. It seems all under control and he is doing very well on Abiraterone. He is still working full time though struggles with fatigue and peripheral neuropathy from previous treatment. He had full chemo cycle and radiotherapy and been on HT since the beginning also. Don't know what else to say only it's a daily struggle. I have kind of learned to live with it but have forgotten what it's like to live a healthy normal life. I know life isn't normal and it's comforting (sadly) that there are many in the same boat. It's hard. I just put on a brave face every day at work, and only my family know the full story and 1 friend of mine. For others I say he's recovering from prostate c. I just don't want to discuss it with them. So hard.. keep going and find some little things every day that can give you comfort. Hugs. 

Hi JCoff

From what I have read, your husband is doing as well as he can, which is great news, but it seems your struggling with one thing thing or another, you are a little like my wife, she hates seeing cancer adverts or the word just throws her off, your not able to do things you did in the past, or are a little worried of what might happen.

I was diagnosed in 2016, you can read my profile, tell you all what happened, I give help and advice on here the best I can, reading the plights of many families, my wife who is my carer to worries about me going up stairs, she would love to go on holidays like normal people, is terrified of me leaving her alone, but as long as I have a breath in me I will fight this disease.

Its not easy putting on a brave face, I bet there are times when you’ve alone there’s sadness, myself the more people I tell, the more that are aware of what is happening even if they don’t understand. I’am not telling you what to do it’s your life, just try not to bottle things up put some fun back in your life, we as in i and others do need help from time to time, otherwise have some fun.

Stay safe

Joe

Hi JCoff.Thankyou for your reply.I am so pleased to hear your husband is doing well on Abiraterone, it fills me with positivity.I put a brave face on for so long, friends were amazed as they thought I was dealing with it and said how refreshing it was to see someone so positive, little did they know I felt like a sprung coil in a jack in the box waiting to jump out! I have since told friends that I am struggling, one friend said still struggling! some are very supportive, some do not know what to say which is why I find this on line chat so helpful, everyone on here is going through the same thing. My husband has not fully committed to the on line chat but will let me tell him some of the replies as he finds it depressing. I am considering counselling but my husband feels he does not need it yet but would go with me for support . We have both had complementary therapies in the past which we both enjoyed and continue to talk to each other about how we are feeling. we feel like our freedom and choices  are being taken away from us. The consultant has advised us not to take a holiday which my husband desperately needs but due the risk of spinal cord compression and the state of his spine she has told him it is too risky.We will find out the results of his CT scan this week and whether he can have spinal surgery.The Consultant has a few options for him We will wait and see. It really helps to communicate with others , a huge thankyou Hugs to you too..

Glad to hear your husband is doing well and good luck for his upcoming scan, I have spinal Mets and have had surgery so know how scary it can be. Regarding counseling, when I came home from back to back tours of Afghanistan and Iraq I refused the offered counseling as I was a typical alpha male and have been like that ever since and never been one to talk. When I was diagnosed last year my family kept saying "oh well follow your lead, it's amazing how strong you are" when yet I was struggling but felt I had no where to turn and ended up having some very dark time's and thoughts. I then used the macmillan counseling service and have to say they were amazing in helping me process my diagnosis and thoughts. Sorry for the long winded reply and going off track but just so your husband knows he's not alone in not wanting to talk to anyone, I know it's not everyone's cup of tea, it certainly was never mine but it really helped me and I'm sure it would help your husband, even if it is just so he can process his thoughts and find ways to help you. Best of luck x

Thankyou Paul. From what I have read so far on line, you are the only one that has had spinal surgery, I have read your post to my husband which fills him with some positivity, just knowing that you have come through this surgical  procedure is encouraging. I am overwhelmed with admiration for all of you out there living with advanced prostate cancer, I have said to my husband many times , you have been amazing through all of this and I know it is a huge battle you are all fighting in every way .I am so thankful to you for sharing your experiences, it means more than you will ever know. We are all on this journey together, stay strong and as they say KEEP CALM AND CARRY ON.

It is so scary when the spine is involved, I was petrified of spinal cord damage and potential paralysis but the surgeons were amazing. I am back at the gym and exercising and now have monthly zoledronic acid bone strengthening infusions and take daily calcium tablets. Im here anytime you or your husband need a chat, as is everyone in this group. Iwish you all the luck in the world.