HealingWell
Search Close Search
☰

Metastatic Pca - Psa on the rise again - at what point does new treatment need to start.

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/22/2018 4:13 PM (GMT 0)
Hello again everyone - its now 16 months since my lovely husband was diagnosed with a psa over 6000 and widespread through lymph nodes and bones. In that time he has had Zoladex injections and docetaxel chemo and his lowest psa was 1.1 in June 2017.

We obviously hoped that it would keep going down or at least stay the same for a while but we were probably being very naïve from such a high starting point. Anyway his PSA in October was 1.4 and now it is 2.6 (so doubling time approx. 4 months.)

When it went up to 1.4 the oncologist said to hold tight in case it was a blip but it has continued to rise.

I have found it so helpful going to appointments armed with information from this site so ahead of his next one next week it would be really useful to know if the 2.6 is likely to be a trigger point for either:
a/ introducing biculatamide on top of the zolodex or
b/ starting arbiraterone (Zytiga) or enzalutamide (Xtandi)

Thank you for any experiences x

ADD: Sorry I should have said - I realise that I asked a similar question when the PSA went up to 1.4 in October - just wondering if there are any additional thoughts.
Posted 2/22/2018 4:33 PM (GMT 0)
With metastatic PCa in Canada which i have i was told my psa would be watched and if it doubled in 3 consecutive reading I would be considered Castrate resistant and would be able to get Zytiga. For the Government to cover Zytiga in the province i am in. This was to be the next step for me. Uncertain about your coverage in the UK.

Best of luck to you and your husband!
Posted 2/22/2018 4:40 PM (GMT 0)
That's a very UK username Everton smile

Thank you for replying - I wonder if the system in UK will be similar re the 3 readings ... (Im guessing if it shoots up very significantly in any one reading then they might not wait for the third reading (?)
Posted 2/22/2018 5:12 PM (GMT 0)

Sallyyy said...
That's a very UK username Everton smile

It's a small town where i grew up /krassoc.wordpress.com/2012/10/27/the-villiage-of-everton-eramosa-township-wellington-county/

Although I am aware of the UK soccer club too! wink
Posted 2/22/2018 9:10 PM (GMT 0)
They may wish to try Casodex first, it's inexpensive, then either Enzo or Arbi...
Posted 2/22/2018 11:41 PM (GMT 0)
I wouldn't bother with Casodex - Xtandi is a much more powerful antiandrogen. Either Xtandi or Zytiga would be a good move, imho. Did NICE approve Xofigo or Provenge? Those would be good too.
Posted 2/23/2018 1:05 AM (GMT 0)
We Americans sometimes assume that all the new and very expensive drugs and treatments available to us as long as we have decent insurance are available to to everyone..Unfortunately, that is seldom the case.....
Posted 2/23/2018 8:34 AM (GMT 0)
Yes I *think* here they prefer to try Casodex first. I think one reason is cost but also to try and extend the time before you move onto Zytiga etc to get as long as possible out of every option.
Posted 2/24/2018 2:50 AM (GMT 0)

Hello Sallyyy,

Have been wondering how you and your husband have been faring on your medical journey ...

It sounds like you have had meaningful SUCCESS from your treatments so far ...

In your husband's case, to go from a PSA of over 6,000 down to single digits is a testimony to the treatments that you have pursued so far.

A diagnosis of prostate cancer has impacted three generations of my family ... my grandfather, my father, and now me.

My grandfather was diagnosed with advanced prostate cancer in the 1970s, when I was growing up.

My grandfather was diagnosed one fall ... we had one last Christmas together with him ... and he was gone before spring arrived.

Looking back, I realize now that no real treatments were available then for him ... no chemotherapy, no radiation, no breakthrough medications ...

I realize that my doctors had treatments to offer me from day I was diagnosed. These treatments have continued to help me. I just celebrated my fifth Christmas and New Year's Day since my initial diagnosis. I give thanks for this.

Your husband's initial treatments have helped him a great deal.

As in your husband's case, I have also pursued a series of chemotherapy infusions, and I am also on the ZOLADEX injections that you mentioned in your post.

Following chemotherapy, my oncologist suggested that I try one of the newer breakthrough medications. In my case, I went on ZYTIGA. I have friends who started taking either ZYTIGA or XTANDI, following a series of chemotherapy treatments.

This is a time to rely on those trusted bonds with your husband's doctors. Rely on them and their medical expertise.

I wanted to share a bit of encouragement with you ... in my case, starting on ZYTIGA lowered my PSA to the lowest level I had ever experienced since my diagnosis ... even lower than what I achieved during chemotherapy treatments.

I started saving my empty monthly bottles of ZYTIGA, as a way to chart my progress and to feel a greater sense of gratitude for the medications and treatments which were NOT there in the 1970s to help my grandfather. His courage and fortitude continue to inspire me, all these years later.

I just received my 32nd monthly bottle of ZYTIGA. It continues to help me.

I hope something in my treatment story encourages you to stay on course with your treatments, and to keep pursuing additional treatments, whenever your husband's medical team recommends it.

Wanted to reach out, from across the miles, with a message of hope and encouragement.

Handshake of support, fellowship, and camaraderie,
CYCLONE TEAM FAN ~ Iowa State University
Posted 2/24/2018 5:44 AM (GMT 0)
Hi Sallyyy,
I had a starting PSA of 5,006 about 4 years ago. I did Lupron (comparable to Zoladex) with a bone agent and my PSA nadir was 1.0. I did not have early chemo. When my PSA got up to around 4.7 my oncologist tried a re-challenge with Casodex. It dropped my PSA down to around 2.8, and delayed my PSA from going over 5.0 for about 4-5 months. Thereafter, my PSA rose in a roughly linear fashion. Being largely asymptomatic (and despite my larger tumor burden) I did some Provenge, some genetic germline testing, a Ga68 PSMA PET Scan, and eventually went on Xtandi with a PSA of around 95, about three years after initial diagnosis. My new PSA nadir was 1.2, and my current PSA is 1.7.

I'm not a doctor, and I'm not recommending any treatment sequence, ... just sharing my story from the USA, California.

In the UK, links like these might lead to more information on NHS Approved treatments, and resources who may be able to talk about them in the context of the UK NHS.

/www.macmillan.org.uk/information-and-support/prostate-cancer/advanced-prostate-cancer/treating/hormonal-therapies/individual-hormonal-therapies

Charles
Posted 2/24/2018 9:11 AM (GMT 0)
Hi... I too thought Everton was a Brit smile

My Dad has metastatic PCa and (sometimes my signature appears.. sometimes not so will give brief overview) His psa rose dramatically over a period of around 6 months ...from 13... to.. 40... to 70 ... last psa result was 220. They didn't do anything immediately, they waited a good few months before starting him on Zytiga. I do question why they didn't start him on it earlier but I'm presuming they had their reasons... expense being one of them probably.

Have you been in touch with the Macmillan nurses? I'm guessing you have but just thought I'd mention it... they've been an absolute God send. My Dad struggles to get around at the moment (he has arthritis in his spine as well) they have provided so much to help with his mobility. Not sure if that's an issue for your husband but if you haven't been in touch with them, I highly recommend you do. They can offer support in so many ways.

My Dad seems to be doing well on the Zytiga, his next check up is in 2 weeks so we are hoping the psa has gone down.

Sorry I haven't offered much help, just an account of how my Dad's treatment went when his psa started to rise. Some of the more knowledgeable people will be able to offer more advice on the questions you should be asking. You're well informed on the treatments available so don't be afraid to ask about each and every one.

Wishing you the very best. You sound really positive which is great, there are many treatments available and I hope that the next works well for your husband xx
Posted 2/24/2018 10:24 PM (GMT 0)
Thank you so much everyone for the extra messages and for thinking of us (and for remembering us cyclone smile I'm glad your treatment is still going well.)

I have called the Macmillan number a couple of times for info and they were really helpful.

I'll report back after the oncologist appointment x
✚ New Topic ✚ Reply

HealingWell

Connect With Us
© 1997-2024 HealingWell.com LLC All Rights Reserved. Our website is for informational purposes only. HealingWell.com LLC does not provide medical advice, diagnosis, or treatment.