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Enza: PSA down, ALPS up...?

User
Posted 05 Dec 2015 at 13:11
Tony has now had four weeks on Enzalutamide, as his PSA was rocketing up again despite the Decapeptyl. He has just had a blood test, showing that:

1. PSA down from >130 to 18 (hooray!)

2. Alkaline phosphatase has continued to rise, and has doubled to 3500 (boo!)

So what are we to think? He feels quite well and is currently building a fence in the garden, although he's still taking hefty doses of painkillers, not daring to stop these until he's seen the oncologist.

This appointment is on Monday (in 2 days), so it's not long to wait, but we want to have the right questions, and possibly the right answers if he is offered choices, at the consultation. If anyone can suggest why there's this discrepancy in his progess, and what this might mean re further treatment, we'd appreciate your thoughts and opinions.

When the Enza was started, the oncologist was talking about adding in Radium 223 and possibly Zometa, if the Enza was helping. That sounds like a heavy load of treatments to be facing, but perhaps this will be necessary?

Or could it be a liver problem, and if so, why would this arise now, and would it cause any other symptoms?

Marje

User
Posted 05 Dec 2015 at 14:24
Marje

Things get really stressful when the meds become almost trial and error.

The reduction in PSA is great and may be a combination of chemo continuing to work and enza boosting it. The ALP rise is probably due to those drugs having an impact on your Husband's liver albeit the level does usually come down when those drugs are stopped or reduced.

However it can also be caused by bone trauma of any kind, not necessarily mets but an imbalance in the natural bone cell death and regeneration process.

When you speak to the specialist at your review they might suggest introducing Zometa infusions every 3 weeks or so to help strengthen the bones.

They may also have a much better explanation for the ALP rise and offer other solutions if they don't think Zometa is a good option.

The main thing they will focus on is that your Husband is feeling well, managing chores and achieving a massive PSA reduction.

I hope you are well too, remember to look after your own self.

All the best

Xxxx

Mo

User
Posted 06 Dec 2015 at 00:25

Hi Marje
I had a similar situation where psa was down significantly when taking enza and abiraterone. My ALT readings (also a liver condition measure) went skywards. I was told by my specialist to stop taking the a Abiraterone and the Alt reading came down within a month. The psa stayed down.
I know it's not exactly the same but a break did the trick
I believe it is very important to keep your liver working on fighting the PCa and not some of the toxins in the drugs.

Maybe your oh just needs a break from the enza.

It's just my own opinion from my own experience as everyone is different.

Hope it helps a bit

Paul

User
Posted 07 Dec 2015 at 17:03

Thank you both for your thoughtful comments.

I can now report back to you, and to anyone else who happens to read this thread. It's all good news. The oncologist says the high ALP is probably a temporary flare, possibly caused by bone healing, and by a delay in the effect of the Enza. He expects it to go down again.

So we are left with a very positive response to Enzalutamide, plus the fact that Tony is feeling fit and well. He is going to start phasing out the painkillers now, and see how that goes. Zometa may be added in later to strengthen the bones, probably beginning in January, but it may not be as often as monthly after the first couple of infusions; perhaps every two or three months. Treatment with Radium 223 may be indicated later, but probably not until the Enza loses its effect.

So we are feeling very pleased and relieved that we can look forward to Christmas with no worrying tests or intrusive treatments getting in the way. Th overall prognosis is still bleak, but just the prospect of an extra few months' more of good quality life is very cheering. Today has been a good day!


Marje

User
Posted 30 Dec 2015 at 15:21

Just a quick update to those who replied, and anyone else interested: today Tony had the results of another blood test.
PSA down from 18 last month to 3.9 (lowest it's been since before he was diagnosed)
ALPs down from the rather worrying 3500 to a very pleasing 792.
The nurse described this as an "amazing response" to the Enzalutamide. What the onco said last time about the high ALP score being a healing response is obviously correct.

Tony is feeling and looking well, is pain-free, and over Christmas he has been eating and drinking with gusto. We are now hoping to fit in a holiday before long, to make the most of the effect of the magic beans.

I know it can't be a happy New Year for us all, and we know too that this time next year we may be in a very different situation indeed, but we send our best wishes to all of you.

Marje

User
Posted 30 Dec 2015 at 15:48
Hi Marje, great results, hope it continues for a long time. Have a good New Year
User
Posted 30 Dec 2015 at 17:22

Excellent news Marje. I hope the magic works for a long long time.

A couple of side effects to watch out for. One will be obvious if it happens, the other isn't.

Constipation - Dulcolax deals with this and the constipation seems to come and go. I've had it for a month now. I'm going to buy shares in Dulcolax's manufacturer.

High BP - I always had perfect BP prior to PCa diagnosis. Now I'm on Amlodipine. Purchasing a BP monitor to use at home could be a good investment.

User
Posted 30 Dec 2015 at 17:33

Thanks, David. The constipation doesn't seem to be a problem since he stopped the codeine.

We have a home BP monitor, which seems to tally well with"official " readings. So far, Tony's BP is quite normal.

Today we drew up our own version of the chart you suggested to monitor progress. Tony didn't include all the variables in yours, but did add in weight, appetite, and BP, which may all link in with the other factors.

So thanks for the advice!
Marje

User
Posted 30 Dec 2015 at 17:48
Great news piglet, hopefully I will avoid those drugs for a bit longer but great to hear positive result for when I need to.

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 30 Dec 2015 at 18:18
Hi Marje

Really pleased to hear your news long may it continue

Enjoy the new year

Si x

Don't deny the diagnosis; try to defy the verdict
User
Posted 30 Dec 2015 at 21:29

Hi Marje
I always love to hear of good news.
I'm a fan of Enzalutamide and have now been taking it for 12 months with no real problems.
I'm hoping my psa is still down when it's measured again in 2 weeks.

All my best wishes for 2016 to you and Tony

Paul

User
Posted 30 Dec 2015 at 22:04
Lovely news Marje,

After the initial worry I am so glad that things are settling.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 30 Dec 2015 at 23:07

Excellent result, Marje, so pleased for you both. Enjoy the New Year !

Fiona. x

User
Posted 31 Dec 2015 at 00:00

Great end of year boost for you and for all of us taking or about to take enzo! My journey starts late Jan, I hope I can get such a reaction. Enjoy new year!

User
Posted 31 Dec 2015 at 18:03

Brilliant news - happy new year x

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

 
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