Metastatic Prostate Cancer, Carry on or stop Chemo

Where do I start - I am on Carbo myself, keeping hair, back lesions but no compression or fractures apparently. I’m 61 and was in good health till cycle one gave me clots in my lungs. Then the delays went against the carbo second cycle and wasted 5 weeks which has made everything worse that it should have been.

Im here and I want to help you but your husbands body is slightly different to mine but share a few issues.

Getting a prognosis is one thing but getting an update I’ve found to be impossible.

What’s the PSA doing? If the trend is down I’d carry on carbo.

I wish I could help more with your other questions but I’m here if you need me.

Chin up, stay positive and keep asking questions and getting quality answers from reputable sources.

The forum is full of great resources and support. Use it.

Best of luck.

I’ll be watching for your updates. 

Thank you for replying, sorry to hear about yourself x PSA was (I think) 185 a month or so ago. They don’t really tell us now, I think because of the aggressive of his cancer it doesn’t make much difference. Same as Gleason, they don’t do that. I don’t really understand. I will ask the oncologist next week. I find no one tells you anything unless you ask millions of questions. He did have another bone scan yesterday, so will also see how much more it’s spread. Just taking it a day at a time at the moment

Keep a good record of all the results and things you’re told. But write down the questions you want to ask and then the answers too. PSA185 is ok but should fall but you will not get the result via the apps only when you ask the day unit where you get the chemo or your oncologist. It’s like it’s a state secret.

I had my 5th carbo this week and am feeling real tired and well constipated. However my mood is up and down.

You and your OH will be up and down too. The waiting is horrible but I hope you get yourself ready for the meeting next week. Second opinions are easily possible if you’re worried things aren’t going to plan, but I doubt you know what the plan actually is. So take an open mind to start with let the oncologist say his bit and then bring the meeting around to how you see the situation. Write notes and be as slow as you want to be to take in all that’s said. It will be hard to take in but it’s best when you ask for everything to be explained in full.

Im here on your shoulder.

Hi Kes256 ,  Mr U is ideally placed to help and he is an inspiration to us all.  I am pleased your OH has managed to tolerate and stay on chemo as this is really attacking the PCa.  We are all different in the way we tolerate various treatments, so let your team know if he has any changes along the way.  Whenever I have a blood test I always ask for the PSA results and check if anything else is out of normal range.  You may be able to see results in the NHS App, but it depends where you are in the country (I am in Hampshire and can’t get them online).  Try and get contact details for your Cancer Nurse Specialist, in my experience they know a tremendous amount, can be contacted easier than the medics but most importantly they have access to and know their way around the system.  You have a great attitude - taking it day by day, try and stay positive and enjoy time together.  If you have any questions please ask and take care of yourself as well.

Thank you, we have been told that due to his cancer the PSA result doesn’t really matter but it’s nice to see it’s lower. He does have a phone call with his cancer nurse today, so I’m writing a list of questions. Thanks for everyone’s support x