Incurable prostate cancer that has spread to the bones.

Hi Andy, I was wondering how your getting on after your RT your PSA had come down to 17. Has it dropped any further. I hope you are not feeling to bad and that you and your wife are coping mentally. That’s the hardest for me the mental strain and thoughts wizzing around my head. Daves got an appointment to speak to a nurse today re: aberaterone and if it’s normal for it to take 3 months plus to work. Best wishes to you both. Jan x

Hi Willmo

Apologies for the late reply to your earlier posting but I have been away for a couple of days.

I think that My PSA is about 17 but I have a blood test tomorrow prior to speaking to my Oncologist and I will be able to update you next week.

As with Dave, I feel pretty well in myself with only fatigue slowing me down. I have been on several walking holidays in the last couple of years and, in fact, am going on one this weekend.

I decided against having Cabzitaxel as I was told that the side effects were likely to be similar to that of Docetaxel which, I have to say, I really struggled with. I was also told that the benefits would be fairly limited.

I have therefore applied, via my Consultant, to go on a drug trial as there are several being run by Cancer Research UK and the pharma companies. I will update you in due course.

I have not completely burnt my boats as I have been told that I can always opt for further Chemo in the future, if the need arises.

One really has to make the most of every opportunity and never say no to anything!

Very best wishes and, good luck with everything,

Andy.

Thanks Andy, glad to hear your getting on with life. We went on a big walk today then had a meal with friends, but it’s always hanging over my head. I need to shake my feathers. It’s not over till the fat lady sings. Good luck and please keep in touch. Jan xx

Hi Jan 

I totally understand your worry. My husband was diagnosed 4.5 years ago with advanced preparer cancer. They stabilised it straight away with the hormone therapy and chemo. Then late last year he started to have a rise in psa started enzalutamide for 3 months and each month it carried on rising. By December his psa has risen to 300 and the cancer had spread all over his spine hips femur. We were told in December he would start chemo, cabizataxel but the wait was 4 weeks. In that time his psa rose to 800 and his pain in his lumbar region of the spine was so bad they did radio. Afyer his first chemo he had his pre chemo bloods done this week ready for chemo 2, we were hoping for the psa to go down but it’s now 2202! We are so worried. He’s on so many pain killers for the pain. They told us the first chemo can make the psa rise and that it would depend on the next one in 3 weeks as to whether they think it may work. I’m petrified there is not much hope left for him. He’s only 56 and I’m 40 with three boys who adore him. It’s so sad to see the once strong fit active husband become so weak, in pain, and not the person he was it breaks my heart. 
   I hope you and your husband are ok. Sending lots of hope and hugs your way xx

Hi Jan

I can totally understand your worry. My husband was diagnosed 4.5 years ago with advanced preparer cancer. They stabilised it straight away with the hormone therapy and chemo. Then late last year he started to have a rise in psa started enzalutamide for 3 months and each month it carried on rising. By December his psa has risen to 300 and the cancer had spread all over his spine hips femur. We were told in December he would start chemo, cabizataxel but the wait was 4 weeks. In that time his psa rose to 800 and his pain in his lumbar region of the spine was so bad they did radio. Afyer his first chemo he had his pre chemo bloods done this week ready for chemo 2, we were hoping for the psa to go down but it’s now 2202! We are so worried. He’s on so many pain killers for the pain. They told us the first chemo can make the psa rise and that it would depend on the next one in 3 weeks as to whether they think it may work. I’m petrified there is not much hope left for him. He’s only 56 and I’m 40 with three boys who adore him. It’s so sad to see the once strong fit active husband become so weak, in pain, and not the person he was it breaks my heart. 
   I hope you and your husband are ok. Sending lots of hope and hugs your way xx

Hi Vic, so sorry to read your story, you must be going through hell. You must never give up there is always something to be done. Have they not offered him radium 322 that is supposed to be a wonderful pain killer, good for the bones and it reduces PSA. Have you heard of the tv presenter Bill Turnbull, he says he has never felt better. Don’t give up. Best wishes to you and your family. Xx

Hi 

thank you, they have mentioned this may be the next stage of treatment, I just felt like if the chemo doesn’t work will this? I don’t know much about it but this mak a me feel a bit more hopeful xx

Hi Jan, just to let you know I know exactly how you feel ,like you I have days when I cannot stop crying, some of my friends just do not understand what it is like, comments like" struggling" " still " ??? Others have been more supportive .Read my husbands history, just click on facsy .Like Dave, my husband is on Abiraterone, he has been taking it for 6 weeks, so far he has been feeling ok .CT scan last week has shown it has not spread to his lungs and liver, we were experiencing scanxiety waiting for the results .We are still waiting to hear about possible pending spinal surgery due to extensive disease progression in his spine .What a rollercoaster ride it is emotionally .We are all in this together and chatting online has helped me so much. When my husband had his chemo, the worst thing was when his 2 large  toe nails dropped off, he is having to see chiropodist on a regular basis even now. Keep in touch

.Best wishes.

Chris

Google Bill Turnbull’s story it will help you. Think he’s on twitter also. Much love Jan xx

I am new on here my husband has advanced prostrate cancer,its also spread to bones organs etc,he was diagnosed in Oct 2021

He has monthly injections (just moved to 3 monthly)variouse pills for pain had 5 lots of Radio Therapy,hormone pills for the sweats.

All he does is sleep ,sits in his chair and off he goes.

One day his pain is under controle next he is in agony.

Who do I turn to? Who do I ask for advice as its 95% telephone conversation.

Sorry if it seems like I have hi jacked your post but it sounded very familiar.