PSA Score

PSA Score

User

Posted 01 Aug 2015 at 23:03

Hi peter,

I have been off line for a while so have only just seen your prognosis post. I'm sorry to hear the news isn't better, and glad to hear it's not worse.

My OH was lucky- his was caught earlyish. My father also has PCa- his was discovered after local spread. They told him it was incurable, but that HT would hopefully enable him to have many years trouble-free. This treatment was not a cure but was measured as 'freedom from failure'. Failure would be a doubling of the PSA within a set time limit. In any event, his was diagnosed at 61 in 2001. He's now 75 and well. He's been on and off HT, but is living a very normal life.

At the end of the day, cancer or not, we're all terminal. It's just a matter of length of time.

Louise x

User

Posted 02 Aug 2015 at 11:36

Hi Louise its great to read stories like that of your Dad, it must give hope to a lot of people on here, me included. Take heart Peter K you're not done for yet, not by a long way. Best wishes Diesel.

User

Posted 02 Aug 2015 at 19:14

Hi Julie,

Trevor has certainly had a bad time of it over the years, but glad to know he is still doing well.

I too have heart problems, having had a heart attack way back in 1994. That attack left me with a ventricular aneurysm and it was this which caused the delay in my having a biopsy. The biopsy was largely academic anyway, since they could see the tumours throughout my body from the MRI scan. The biopsy was only done so that they can categorise it.

I am just waiting for an appointment to see the oncologist, which I was told would be this coming Friday, but I haven't had confirmation of that yet. I must admit, I am not looking forward to it.

Please give my best wishes to Trevor.

Peter

User

Posted 15 Aug 2015 at 22:19

Well two visits to the oncologist under my belt now and a third visit due next Friday.

He has been a bit vague about my diagnosis, but I have managed to drag out of a few statistics. Apparently I am T4/M1 with spread to bones, local lymph nodes and lungs. As for Gleason score, all he would tell me was that it is 9. I assume that would be 4+5.

He suggested that I join the Stampede Clinical Trial and I have agreed to this. It is subject to acceptance by UCL and I should get confirmation on Friday.

I had my second HT injection on Thursday and I am still very sore from that. Do they get better as time goes on?

I still feel physically fine apart from tiredness towards the end of the day and I am coping very well.

Peter

User

Posted 16 Aug 2015 at 08:08

Hello again Peter.
Glad to hear you are coping with the tiredness. At least it is at the end of the day when most of us will will slowing down anyway and looking forward to a relaxing evening. It gives the feeling of normality somehow doesn't it.

Good Luck with Friday's decision

We can't control the winds - but we can adjust our sails

User

Posted 17 Aug 2015 at 22:20

Peter,

I've had 9 or so HT injections and have experienced a bit of bruising once or twice, but never soreness. I'm on Prostap and my injections are given around the belly button. The nurse notes the site of each injection and takes care not to inject consecutively in the same place. It would be worth mentioning the soreness at your next consultation. Your consultant could change your prescription to a different product.

I've been on Stampede for 2 years - control group - and it's definitely worthwhile for the extra consultations and monitoring.

Hope all goes well on Friday.

Viv

User

Posted 19 Aug 2015 at 14:59

Thanks Viv,

The soreness has passed now. It lasted for about two weeks following my first injection, but with this second one, it has only taken a few days, so that is an improvement. I am on Degaralex, which I am told is the Gold Standard of HT and the best one for my condition.

I have at last had some good news for a change. My PSA which was 168 at the end of June has now gone down to 9. Quite a dramatic fall, though still not quite low enough. But it does show that the HT is working and I am delighted with that.

I am kind of hoping that if I am accepted on the Stampede trial that I will be put into the control group. As you say, it does give me a lot more in the way of consultation and monitoring.

Peter

User

Posted 21 Aug 2015 at 21:43

I have been accepted onto the Stampede trial, but I have been allocated to the RT arm (H). Although I have initially agreed to continue with this treatment, I have since discussed it with my family and thought very deeply about it and I have decided that I must withdraw from the trial.

I have a history of bowel inflammation and even my oncologist has said this is risky with RT. Whilst I would really like to take part in medical research, I feel that the treatment is likely to be detrimental to my health, will cause discomfort and a great deal of inconvenience and is unlikely to provide any material benefit.

Peter

Notification

Similar Topics

Join the online community now.