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User

Posted 15 Dec 2017 at 13:49

Great to see your PSA reduce Roy and finish the year on a positive. Wishing you and all on the forum all the best, Ian.

Ido4

User

Posted 15 Dec 2017 at 19:38

That’s really great to see those results Roy.

Have a fab XMas

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 15 Dec 2017 at 22:35

Very encouraging Roy. Your seasonal good wishes and hopes for the New Year warmly reciprocated.

Barry

User

Posted 22 Mar 2018 at 18:39

Well my results are in and since my last chemo in November my PSA stands at 0.49, which is not as low as I was hoping but still on a downward trend. I met with my Onco today and it was decided to come off the Bicalutamide and tamoxifen and be hormone free for 3 months then rescan and formulate the way forward, which may include Enzo, Abbi tabs, Radium 223.

I have discussed the possibility of being tested for the Brca gene mutation which is now more available, but would be self funding, it may open up new treatments for me but the implications for my family of me being positive needs to be thought through before I make my decision.

All the best

Roy

User

Posted 26 Jun 2018 at 13:32

hi Guys

As some of you may be aware, I underwent Chemo against my better judgement, but relented as it was the only game in town, which turned out to be an experience I found testing to say the least, leaving me with peripheral neuropathy in my hands and feet, basically leaving me housebound, unable to walk due to the pain, so going from being able to walk the dog miles beforehand it has left me in constant pain, although the pain is slowly diminishing it is still restricting.

Anyway just had my results from my blood test yesterday my PSA has skyrocketed from 0.49 three months ago to 5.20 now, so to say am gutted is an understatement , the doubling time is now less than a month, so where do I go from here, do I just go back on hormones and accept the side effects, pay for genetic testing, look for a trial or something else?. this must be the first time I don't have a backup plan so any comments would be welcome.

thanks

Roy

Edited by member 26 Jun 2018 at 13:35 | Reason: Not specified

User

Posted 26 Jun 2018 at 15:41

I’m not clever enough to offer advice but just wanted to say how gutted I am for you and offer support. Sending strength.

User

Posted 26 Jun 2018 at 17:48

Roy, having read your biog, I'm puzzled that you ever stopped the hormone treatment. Through all my various treatments over nearly eleven years, I've always been on Zoladex. Your PCa looks to have been pretty aggressive. Was there never a biopsy? There are treatment options available to you, I'd have thought, as there have been to me. If yours is a highly differentiated cancer, the latest, yet to be cleared by NICE, Keytruda, might be of interest, too. Your oncologist is best placed to advise, of course, but your PSA number is still low and you should certainly not despair.

Good luck

User

Posted 26 Jun 2018 at 22:07

My husband finished Chemo last October PSA 1.1 (down from over a thousand at diagnosis March 2017). Since October every PSA has risen (doubling in 5 weeks) and he was offered Abiraterone, Enzalutmide or clinical trials. We went to the Marsden to talk about clinical trials and is now on a trial for Ipatasertib / or placebo with Abiraterone. PSA coming down and only 6 weeks into this. Minimal side effects if any. A few odd aches occasionally but no pain killers needed, We know he is on Abiraterone and there is a 50% chance he is on trial drug but it is double blind. Lots of monitoring and will be scanned again next week.

I hope you find a treatment that works for you.

User

Posted 26 Jun 2018 at 22:35

Can’t advise Roy but just want to wish you well and sorry to hear the PSA has risen. I’m sure others will offer sound advise as pretty sure there are still plenty of tools in the box

Take care

Bri

User

Posted 26 Jun 2018 at 23:17

Roy,

Sorry that you have suffered severe side effects of Chemo without the hoped for improvement. I would agree with AC this needs to be discussed with your oncologist. You could also seek a further opinion from the Marsden who perhaps have a wider experience through running many trials.

Barry

User

Posted 28 Jun 2018 at 17:38

Hi All

thanks for the input and best wishes. I saw the Onco today it seems that all he is offering is a CT scan and requesting my GP to administer Degarelix, which he says they may not due to the cost. No Abbi, Enzo or Radium unless my testosterone is lowered. I enquired as to genetic testing which was talked about at the previous appointment but he said if they found a defect in the genes tested it wouldn't be possible to treat, but the Brca test may be useful if I personally can put up a good case with the Women's Hospital for them to allow it, feel like I am being fobbed off, so I might go for the CT scan and if this is all there is on offer, I may contact the Marsden to see what trials I may be eligible for.

one other thing is that when looking on the NICE website it states that Degarelix is only sanctioned for men with spinal mets so even if my GP agreed it may not be allowed unless the scan shows its now gone to the spine.

all the best

Roy

Edited by member 28 Jun 2018 at 19:13 | Reason: Not specified

User

Posted 22 Aug 2018 at 13:33

just viewed my PSA online and it doesn't look good, as it has risen from 5.2 to 23.2 showing a doubling time of 26 days, so. It looks like the Chemo was a waste of time and possibly worsened my doubling time, so with hindsight I should have possibly followed my gut instinct and kept well away as the only thing it has given me is Peripheral Neuropathy making it difficult to walk. I also had a PET/Ct scan but will no know the results for a month as my Onco is away on holiday, so what do I do, do I have the only treatment on offer Degralix or start taking the remaining Bicalutamide I have left until my Onco returns.

Roy

User

Posted 22 Aug 2018 at 14:13

I’m so sorry to read this Roy. The waiting game until you see oncologist again is very difficult.

Are you expecting to be offered Abiraterone or Enzalutamide?

Ido4

User

Posted 22 Aug 2018 at 14:31

Hi Ido4

Thanks for the reply. I have been told that Abbi or Enzo can only be offered if I am able to lower my testosterone to Castrate level, I don't know if others have been told this or it can be used as mono therapy.

thanks

Roy

User

Posted 22 Aug 2018 at 16:47

Roy, I understand that abiraterone is given to men already on HT. I assume it is the same for enzalutamide. Certainly in my case, abi was a supplement to zoladex. It worked for nearly three years. I suspect in your case, however much you may dislike the inevitable side effects, you are going to need to get the testosterone out of your system if it is feeding the PCa. A month of HT will probably get you to a point where abi becomes an option, but thereafter I suspect you will stay on HT. Checking out with your oncologist.

User

Posted 22 Aug 2018 at 17:51

Sorry to read this Roy. As with everything PCa treatment seems to differ wherever you are. I’m not being checked again till January next year and my psa is expected to be 100+ with zero signs of spread. Because I’ve rejected scatter-gun RT four times now , HT hasn’t even been offered. All NICE protocol. They hardly going to offer hugely expensive drugs when no distant mets seen. However they will offer them if you have SRT and then still rising psa. But my Onco whispered in my ear I’d be a candidate for Abi and early Chemo , which even bypasses normal HT. Not even sure I’m interested in anything tbh having read many stories.

Hoping that you get the best treatment and I guess as ever you have to makes waves to be seen sometimes. All the best

User

Posted 22 Aug 2018 at 20:30

Abi and enzo work best on castrate resistant PCa - yours isn't castrate resistant yet so you would be taking a drug that isn't designed for the stage you are at. I think that unless you can get on a trial, you have to opt for the degarelix and see what happens - once that fails, abi or enzo come into play.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 22 Aug 2018 at 20:51

Hi guys

thanks for the support.

AC yes you are right I need to tackle the testosterone and Degralex should get me to castrate in less than 3 days which after past experience is not appealing with the side effects and the possible mutation of the PCA, whereas Bicalutamide has caused me little problems apart from the obligratory man boobs. The Onco took me of Bicalutamide saying it was no longer effective which I don't understand as my PSA was still on the decline although declining at a slower rate.

Hi Chris

its difficult to know what path to take knowing that every intervention seems to cause the cells to mutate to find a way to survive. I have always questioned the way NICE lay out the steps we are to take based on cost effectiveness, leaving other counties to innovate and shoulder the costs.

one thing I don't understand is if Chemo is designed to kill fast replicating cells, why do we continue with hormones suppressing this process,as i believe with other cancers they stop hormones whilst undergoing Chemo.

thanks Lyn for the reality check I was not told that Abi or Enzo work better on CRPCA as my Onco has always said it was an option after chemo. Do you know if it can be used as mono therapy.

thank you all

Roy

User

Posted 22 Aug 2018 at 21:09

Thinking of you Roy and hoping the scan results are ok. It’s a sod that you have to wait a month though

Bri

User

Posted 22 Aug 2018 at 22:50

No, it is always given with HT I think. The point is that degarelix etc stops production of testosterone; when you become castrate resistant what they mean is that your cancer has learned to create pseudo testosterone so that it can feed. Abi & enzo stop that bit from happening - it wouldn't treat your cancer if you have testosterone in your body.

Bicalutimide does not result in castration so will not solve your problem.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

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