Incurable prostate cancer that has spread to the bones.

Hi Jan

I was diagnosed 4 years ago with a reading of 230. This dropped to nearly zero after chemo and hormone treatment but then crept up to about 70 last Autumn, despite me being on Abiraterone.

I had a course of radiotherapy which only finished 4 weeks ago and it has since dropped to 17. I feel a lot better since the radiotherapy but think it may only be short lived. I am hoping it may drop further but only time will tell.

I am hoping to go on a drug trial as I am running out of options. I do however feel very well but suffer from fatigue and other minor side effects which is quite normal with most forms of hormone treatment.

Very best wishes to you both,

Andy

Hi Jan

I saw and read the posting by the retired doctor but think it may have been taken down, either by himself or possibly, the moderator.

It is not possible for you to delete the posting, so rest assured!

Andy.

What a shame he had a lot of encouraging info and I didn’t get chance to let Dave read it. There’s such a lot of info I can’t remember. Thanks anyway. X

Hi Andy, so pleased your PSA came down to 17 after your RT. I think maybe that’s what Dave will have to do, maybe it’s the dense spot on his pelvis that’s making it rise. Are you still on aberaterone. Stay positive, they are bringing new treatments out all the time. Xx

Hi Jan

I was taken off Abiraterone in August as it was no longer working. I had only been on it for a year.

I wasn't warned that this could happen but now understand that 2 or three years is the norm. It does however depend on the nature and extent of the cancer and mine is both advanced and very aggressive. Incidentally, my cancer was first diagnosed in my lymph nodes and hips.

In my naivety, I thought I could be cured of this terrible disease but now realize that it is more about managing one's symptoms with a view to leading a reasonably normal life.

I don't know how Dave got on with his Docetaxel and I would be interested to hear how he coped. I too had 6 sessions but my Oncologist recommended 4 more. However, I gave up after 2 sessions as I found  it made me feel so ill. I thought I was being a wimp but my Oncologist shook my hand and told me that he was surprised I got that far!

Like you, I have good and bad days but I just keep on asking the questions.

Very best wishes to you both,

Andy.

Hi Andy, just read your message, will reply in detail when I get home. I have everything written down in a sort of a diary, so will have more info for you. Xx

Hi Andy, Dave’s cancer is a tiny spot on his pelvis and s tiny spot on the base of his spine. You asked how he coped with docetaxel. The first 3 sessions weren’t to bad the biggest problem at that point was he couldn’t sleep at night and was experiencing zap like pains in his legs. He also lost all sense of taste. He was extremely tired but by day 7/8 he started to feel a little better. Then on day 16 his head and legs were on fire, the day after he shaved his hair off. The rest of the cycle up to day 21 wasn’t to bad. Cycle no. 2 lost taste again, felt bad tempered and the end of his fingers felt sore. By day 10 of 2nd cycle he slept well taste came back again by the last week he picked up again. Each cycle was pretty much the same, I.e no taste for a week, no energy and the worst for him not being able to sleep at night. As well as not sleeping the sweats at night were horrendous due to the hormone treatment the bedding used to be soaking. Cycle 5 the symptoms were relentless for the whole 3 weeks. Cycle no. 6 was the same but with an added problem of the onset of neuropathy in his feet. Which he still has today (two years on). I would say it took about 4 to six months to get some fitness levels back (we have always done a lot of hill walking and he felt he couldn’t do it anymore). I must add he can now and I struggle to keep up with him. He still has the horrendous flushes but his main worry is his PSA keeps rising. He’s been on aberaterone 3 months now and they have agreed to another month. So no Andy your not a whimp, chemo is a gruelling thing. But both you and Dave are still here to tell the tale. Dave says if that was his last option he would go through it again. Best wishes to you, stay safe and keep in touch. Jan xx

Ps you had to extra rounds than Dave so you deserve a medal.

Hi Jan

I went through exactly the same thing, except five years plus my feet I still feel like I’m walking on strange ground, the chemo brain as we called it on here passes after time, other than that it was the brown nails, was a little luckier with chemo whacked the socks off me, but battled through the six cycles, although I’m half as strong tired and fatigued, I would do chemo again just to be with my wife, let’s face it, the alternative is not worth thinking about. 
Stay safe

Joe

Hi Joe, Dave says that’s a very good description. I do all the messaging as it would take Dave forever lol, he is not technically minded. Please stay safe yourselves and keep in touch. Jan xxx

Hi Andy, did you have the cabazitaxil, Dave really doesn’t wish to have more Chemo. He is really fit with no pain, as yet but this damn PSA keeps rising. He has 6 monthly hormone injections and haseen on aberaterone for 3 months. They are willing for him to stay on it for another month. A scan in November proved that not much had altered in 2 years. His PSA is now 28 on diagnosis it was 32. can’t understand why they are pushing for more chemo at this stage. I would be grateful for your opinion as you seem very knowledgeable. After saying that I imagine you would prefer to not have to ow anything about this horrible disease. My heart goes out to everyone. Like your wife I am constantly crying which I know is not helping Dave. Best wishes xxx