Hello and question about hormone treatment

Hi  and welcome to the Online Community. I'm aghast! - some Doctors need to go on seminars as to how to deal with patients - I've read a few horror stories on these forums about flippancy. 

I've a different type of cancer and can't offer an answer so hopefully the members here will be along soon to answer. I did type "Enzalutamide" into the search bar at the top of the page and generally the comments indicated it works well but can cause tiredness and fatigue as do a lot of adjuvant treatments. As with every treatment we need to be as healthy as possible and eat all the right things. Tell him to have a word with his CNS for more clarification. You could also Ask a Nurse here on the forum, just click on the link I've created but you may need to wait two or three days for an answer.

Sending welcoming hugs, B x

Hi anaF, some doctors are disgrace, but most are great.

I am 73 with advanced prostate cancer which has spread to my bones and lymph nodes and soft tissue around it, I I'm on Decapaptyl injection 6 monthly, and daily Enzlutamide tablets, ther are side effects, I have hot flushes, headaches, tiredness and lack of libedo.

All of which are manageable, with the help of my very understanding wife, these hormone's work very well and I am happy to be on them, my PSA has dropped month on month, last reading was.7, considering I was diagnosed in January. All the best to you and your husband with you future journey.

Ulls

Hi AnaF, comments like that are so unwelcome and play mind games with patients. My experience was I had multiple blood tests, my prostate test was not great so my GP phone and said ‘ we have to have a chat about your cholesterol at some time but that’s the least of your problems’ . Since then many nights of tossing and turning and getting little sleep. I’m sure your husband must be concerned but I have great hope after reading others experience on this forum that we can get though this and help each other best wishes Tony..

Hi MrsBJH

Thank you so much for your reply and useful tip and link about Ask a Nurse. I'm so sorry to hear about your cancer. It is such a cruel disease.

Thank you so much for your warm welcome.

A xx

Ulls and Tony 123

Thank you so much for sharing your experiences. I'm wishing you well with your treatment.

Thank you to all of you for making me feel so welcome. I was nervous about posting as sharing on social media still feels a challenge for me. And my partner wouldn't touch it with a barge pole, though he has very much appreciated receiving the information and experiences I've found here and shared with him over the last 18 months.

It's good to find myself amongst such kind people when society seems headed more towards an emphasis on the young and fit.

Very best wishes,

A xx

Hi AnaF

Never be afraid to ask us anything, we give help and advice where we can, we are not doctors but we’ve all been through various treatments, I’am on enzalutamide it can have various side effects, worst for me was nausea being a bit dizzy, I had to stop but restarted on a lower dose two tablets now on three will be trying four in a few weeks. 
We all know how this affects us, but also the people around us, including our wives who see from day to day what is going on, how some days are good and others not so, it can be extremely stressful, so like your husband stay positive, you never know a cure might be round the corner.

stay safe

Joe

Hi AnaF like your husband I wouldn't touch social media with a barge pole, you will not find any trolls on this site,no matter which group you are a member of we all have the same problems,either living with cancer,or supporting a loved one with cancer, so help, advice and kindness found in abundance, keep talking to us about anything.

Big electronic hugg to both of you.

Ulls

Thank you joeven for sharing your experience of Enzalutamide. I hope they manage to resolve your dosage and things settle down a bit.

We'll see what September brings I suppose. He's got away with few side effects from the Prostap 3-monthly injections (tiredness mainly) so the next stage might be a bit more challenging. We'd really hoped the Docetaxel would hold that off for 18 months as the doctor suggested so it's a bit of a let down to face it at 9 months. But he's still pretty well and active so fingers crossed.

Ulls - thank you for your encouragement about the forum. It's good to read that. I see such harsh things on some social media.

A xx

Hi Anna

Do you know if he had radiotherapy, or was that not an option, normally advanced people like us, get hormone treatment followed by chemotherapy, followed by radiotherapy, then put on hormone treatment, did this happen to your other half ?

Stay safe

Joe

Hi Joe,

Thank you for your reply. Radiotherapy never seemed to be listed as an option. I'm not sure why though we did ask at one point and were told it would be hormone followed by chemo, with a decision taken after that. That sounds like a question we should ask again though so thank you.

Take care.

A