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Re: very high psa

Thanks for your reply we are in Manchester, he is also on a trial called Stampede where there were 5 different things that were on it 1 being just the original hormones, 2 hormones with chemo etc , my dad just got the 1st one with nothing extra so when he sees the oncology nurse that is just as part of this trial , from the information I have read & the charts on this website a PCA of over 300 is still very high & my worry is that his pain is increasing again over the last few weeks that it is now getting higher as after his 1st injection he improved significantly but after his second one he is just getting worse , all the evidence I have read seems to be that the lower thay can get your PSA the better your chances so shouldnt more be being done to get it lower ??

Re: very high psa

KF,

I am sorry to hear about, the terrible time your father is having with PCa, due to the incredible incompetence by the Medical Profession in the UK. You say you are in the National Health system, does that allow you to to change oncologist and specialists and get other opinions, regarding his treatments?

A PSA of 8, is certainly not ok and he should have been sent for a byopsy in April 2008, which could have discovered the PCa a lot earlier and it may have been treatable at that time.

What other options was he given other than ADT and a trial?, what hormone treatment is he recieving Lucrin (aka Lupron) etc. Was he offered Chemotherapy?

I strongly suggest that he gets another opinion from a Medical Oncologist, or demand that some action be taken to treat his PCa and pain, even if that means he will have to discontinue the Trial, because at the moment he is no more than guinea pig for what ever company is running the trial.

I do not have to tell you that your father is not in a very good situation at this time and he should shout loud and long to obtain the best treatment that is available.

I live in Australia and am a 7 year surviver, after being diagnosed as inoperable in May 2002. I have just started on a Trial for Abiraterone Acetate plus Prednisone, because I to am untreatable by conventional medicine.

Please do not accept what the trial nurse is telling you, demand to see a Medical Oncologist as soon as possible.

I wish you and your Father the very best of luck, keep fighting.

John.

Re: very high psa

I dont know if you have read the details regarding the Trial, thay are available at http://www.liveweb49.bham.ac.uk/patients.shtml

As you can see your Father is on the least aggresive arm of the Trial and if it were me I would not continue, because he is only recieving ADT which has been used for years in the treatment of PCa.

Re: very high psa

Thank you John , you have written what I think but it is so difficult to tell my dad as I dont want him to feel he has been let down , he has worked & paid takes for 45 years & this is the only time he has ever been inside a hospital, to me they have given him a poor diagnosis & that is the end of it , he has been told that they will start chemotherapy when he becomes hormone refractory, surely a psa of 300 four months down the line is clear enough its not working. His Gp actually told him that anything under 10 was fine, I am so, so angry I am due to get married in April he is the best father & grandad & watching him is awful , but his spirir is fantastic & he never complains xx

Re: very high psa

Dear kf,

It is a well known fact that any PSA over 3 should be investigated, did he have a DRE (Digital Rectal Examination) when he had his PSA test in April?

I understand why you are concerned about telling him that he has been grossly mistreated by his GP, but also by his oncologist and urologist, once they knew he was not going to get the Chemo arm of the trial, they should have removed him from the trial and treated him with Chemo right away.

I must point out that I have no Medical Training, but as mentioned am a 7 year servivor of inoperable PCa. For 12 years my PSA has never been over 5. I will be 70 in May this year.

Please, I implore you to get your Father to demand to be treated properly or take him to another oncologist for a second opinion. The hormone treatment is definatly not working, and it is criminal that he is not recieving correct treatment for the stage of his cancer.

You must make this a priority as it seems your Fathers PCa is very very aggresive.

I hope I havn't frightened you with this post, but this is not the time to pussy foot around, you Father needs urgent medical attention.

Good Luck and God Bless,

John

Re: very high psa

Thank you again for your reply my mum has rang the oncology dept today & is awaiting a callback, you have not frightened me at all I know haw bad things are his GP has told him how agressive it is & the PSA rise seems to be so fast , an example of how fast & jus to add insult to injury with the NHS , after he had his PSA taken by the GP of over 300 they sent him for a biopsy , at this stage he was still working 12 hour days driving a HGV , whilst waiting for his biopsy results him & my mum were due to go to Malta the GP said it was ok to so & my mum informed the urology dept they would be away for the next week ( at this time nobody had mentioned cancer & the oncologist had not yet become involved my dad had told me abt his biopsy but not his PSA result as he didnt want me to worry !!) whilst in Malta he was very poorly & was hospitalized for 2 days with severe back & chest pains & at the same time the urologist from the UK rang & said he needed to see him the next day , my mum explained they were away & had notified them of this. When they came home mum rang straight away for an appt & was told consultant was on holiday for next 2 and half weeks & he was the only one who he could see, during this time his pain was terrible, he went back to his GP he gave him ibuprofen, he was back at hospital as losing blood in his urine they gave antibiotics for an infection, realising how poorly he was I rang the GP to get his results was told the hospital wouldnt release, rang hospital complaints dept was told only this man cld give the information , so after nearly 4 weeks ( 1 week my dad was away, nearly 3 the consultant ) in which time he had been in constant pain, couldnt sleep because of it he was then told the diagnosis & given a bone scan & another blood test which confirmed the spread to nearly all the skeleton & a PSA of now over 1000, god bless the NHS hey ???

Re: very high psa

Hi kf,

O.K., thanks. That's a bit clearer now.
A poor story re-diagnosis, and not unique. It does happen sadly. I was fobbed off by a GP which delayed my own diagnosis.

However, it's time to move forwards rather than get mired in a blame game, which would not alter the current situation.

The Stampede trial is considered a good one due to the extra attention. Unfortunate if only on the standard treatment arm, but this is not less than standard treatment.And you get extra check-ups.

The usual situation is to check the psa is dropping and see how far down it will get. The lower the better is correct, but you have not reached a nadir at this time. I understand that psa has already dropped from over 1000 to 300; showing a good response to the hormone treatment.

Once the psa has dropped to nadir, it is usual to see if this can be maintained. If not, then another treatment is added.e.g. Casodex.

Personally, I would like to see your Dad on injection ( Zoladex ? ) plus an anti-androgen such as Casodex + a 5-alpha reductase-blocker such as Avodart + a good Vitamin D3 supplement ( perhaps 5000iu per day )Use of Zometa might be an advantage sooner rather than later, but that depends on the Oncologist.

From what you say, it doesn't sound like the best time to use chemo. If your Dad is run down, the hormone treatment may give him a chance to build some stamina. Chemo is usually only undertaken here when hormone treatment is deemed to have failed. This stage has not been reached.

I suggest that the psa is being watched and IF it does not come down sufficiently or starts to rise again, more thought will be given to chemo. But you ain't got there yet !

Regards
Rob

Re: very high psa

If I was your father I would abandon all trials at this stage so as to prevent any hesitation on any treatments you want to try. Read as much as you can so you know what and why treatment is being done. Try for maximum testosterone reduction and anti-androgene at this stage. Get weekly or more often PSA tests so that if the PSA starts to go up they can jump right onto the next chemo drugs.

They may be considering quality of remaining life issues but if it was me I would want them to give me everything they've got.

You might also want to read Pradeep Raj's (PSA 63)case who is in India and is fighting a similar siuation. They seem to be giving him everything possible and some of the drugs work but you also have to keep trying something new as soon as the old one stops. Also your Dad should be getting some spot radiation treatments where possible to reduce pain.

Re: very high psa

Thank you so much for all your replies ,Rob that is the injection he is on I think & prior to having his 1st injection he had to take a daily tablet for about a month , think this may have been Casodex but not 100% on that he is not taking it anymore, the oncology nurse rang back & said if his pain is bad he needs to see his GP especially if any pins & needles ( not sure why this ?) & they can do radiotherapy on certain areas if necessary, he has an appointment with the consultant in a couple of weeks,thank you all so much x

Re: very high psa

KF,

I'd guess the reference to pins and needles is because this might be a sign of pressure on his spinal column where compression often develops if the bone is damaged by the tumours.

Terry in Australia

Re: very high psa

Terry is correct. Any sign of numbness or pins & needles in the legs may be a sign of spinal cord compression. A possible effect of mets on the spine.

Please note "possible" and "may be".

Any such symptoms for those with confirmed spinal mets should refer to consultant without delay. This was emphasised to me at a talk on the subject by a specialist.

One can leave a trial at any time and revert to standard treatment. In this case I would only leave such a trial if absolutely certain that additional gains would be made.i.e. the Consultant is willing & agrees to add further treatments which might not be allowed on the trial.

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