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Chemo finished but PSA still rising

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User
Posted 09 Dec 2015 at 18:15
I finished 10 sessions of chemotherapy on August 17th during which time my PSA levels went from 104 down to 0.05 at the end.
I went through the side effects experiences good weeks and bad weeks. I have had a 3 month respite and recently had my first blood test since the end of chemo.
My results were a great disappointment, I expected the PSA to be somewhere near the same level or slightly higher, shocked to find it has risen to 13.5 utterly shocked and disappointed. Seen my oncologist on Monday who now recommends that I have a further ct scan,plus a bone scan. He says there are other alternatives such as a chemo tablet, but did not divulge any name.
I would be grateful if any one out there who has been in a similar situation,I.e PSA rise after chemo,and follow up treatment etc.could impart their experiences.
In anticipation
Alan
User
Posted 09 Dec 2015 at 20:25
My husband Tony, diagnosed with advanced Pca in Sept 2014, was given a course of early chemo (docetaxel) which it was hoped would extend his life by a year or more, and delay the time to disease progession. Our hopes were dashed, however: he had his last chemo in March, his PSA having reduced from over 2000 at the outset to about 4. But by July, it was up to 4.9; in October it was over 18, so we knew something was wrong. The cancer had found a way round the hormone treatment, Decapeptyl, and PSA continued to rise to over 130 by November.

The oncologist admitted that the chemo may have made no difference at all, it's hard to say. What we do know is that if Tony had not chosen to have the chemo, he would be deeply regretting the decision by now. Like you, he went on to have a bone scan, plus a MRI scan and an Xray, as he was getting pain in the spine and hips.

He is now on Enzalutamide (could this be the treatment your consultant has in mind?), which seems so far to be working well, as his PSA is down to 18 again within a month. We don't know how long this will work for, but even a few months' good-quality life would be welcome. Later options may include Radium 223 and/ or further chemo with cabazitaxel, but.we are trying not to think too much about that for now.

I don't know if that's much help to you - the course of this disease, and the treatments offered, seem to vary hugely. I hope that once you have got over the shock of the rise in PSA (and it is a huge shock, we know) you will be offered some further treatment that will put the cancer back in its box for a while longer.

Marje

Edited by member 09 Dec 2015 at 21:40  | Reason: Not specified

User
Posted 10 Dec 2015 at 13:39

Thank you Christmas - I am rather pleased with myself at this idea of PCa treatment being like a car. What I was thinking afterwards was that the PSA test is like the fuel guage - as the cancer treatment works (the petrol is drained out of the engine) the PSA goes down (the fuel guage goes down).

Unfortunately, there are going to very occasionally be people whose fuel guage is broken so the PSA test is not reliable - such as my father in law and Si whose fuel guage says nearly empty even though it is full. There are also rare people driving electric cars who don't have a fuel guage and so all normal rules are put aside.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Posted 09 Dec 2015 at 20:25
My husband Tony, diagnosed with advanced Pca in Sept 2014, was given a course of early chemo (docetaxel) which it was hoped would extend his life by a year or more, and delay the time to disease progession. Our hopes were dashed, however: he had his last chemo in March, his PSA having reduced from over 2000 at the outset to about 4. But by July, it was up to 4.9; in October it was over 18, so we knew something was wrong. The cancer had found a way round the hormone treatment, Decapeptyl, and PSA continued to rise to over 130 by November.

The oncologist admitted that the chemo may have made no difference at all, it's hard to say. What we do know is that if Tony had not chosen to have the chemo, he would be deeply regretting the decision by now. Like you, he went on to have a bone scan, plus a MRI scan and an Xray, as he was getting pain in the spine and hips.

He is now on Enzalutamide (could this be the treatment your consultant has in mind?), which seems so far to be working well, as his PSA is down to 18 again within a month. We don't know how long this will work for, but even a few months' good-quality life would be welcome. Later options may include Radium 223 and/ or further chemo with cabazitaxel, but.we are trying not to think too much about that for now.

I don't know if that's much help to you - the course of this disease, and the treatments offered, seem to vary hugely. I hope that once you have got over the shock of the rise in PSA (and it is a huge shock, we know) you will be offered some further treatment that will put the cancer back in its box for a while longer.

Marje

Edited by member 09 Dec 2015 at 21:40  | Reason: Not specified

User
Posted 09 Dec 2015 at 20:41

Aldee, it is hard to respond as I am not really sure what you were expecting or whether you were given a realistic understanding of why you were having chemo?

What I do know is that you cannot always measure how successful chemo has been by looking at the PSA - some men find their PSA stays the same or even rises during the treatment but the chemo does some serious damage to the engine of the cancer cells which then might allow other treatments to have a bigger impact.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 09 Dec 2015 at 20:47

Ah, I see that you have rejoined with a newish name - for others wanting to look at your previous posts, the link is Aldee1 and most recent thread is here
http://community.prostatecanceruk.org/default.aspx?g=posts&m=135131#post135131

Aldee, are you still on the hormones as well?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Dec 2015 at 10:29
Hi Marge
Many thanks for your reply and feedback. I was originally diagnosed in April 2010 T2b NO MO /Gleason4+3/ PSA 29.8 Given a course of Bicalutamide mono therapy which kept my PSA reasonably low,I had 37 sessions of radical radiotherapy completed in November 2010. I was pretty ok for nearly 3 years and continued to work. Soon after this my PSA began to rise and double up,and put on zoladex implantsi in March 2013. My PSA continued to rise and given Diethylstilboestrol in June 2014.This treatment continued till January 2015 when a body scan showed it had spread to my spine. Totally devastated, there was no other alternative but to follow onco's advice and sign up for chemotherapy. During the whole 10 sessions found the side effects very deliberating and depressing, but had the consolation that my PSA lowered each time from104 at the beginning,to 0.05 at the end. I was so overjoyed to see the end of it and given a 3 month respite with the thought that Docetaxel had done its job. You can imagine the disappointment to find the PSA rise again,feeling it has all been so futile.
I can consider myself lucky in the fact that during all this time, and right up to today,have not suffered any real pain, unlike your Tony. My only real complaint is I still have swollen ankles and feet since the chemo, which apparently takes some time to disappear.
So pleased to see that Tony's PSA has reduced since being on Enzalutamide,my Onco never mentioned any names just that it was a chemo treatment in tablet form with less side effects than Docetaxel, is this the case ?
Do hope that Tony continues to improve, and again many thanks for your feedback.
Kindest Regards
Alan
User
Posted 10 Dec 2015 at 10:49
Hi Lynne
The reason I was given to undergo Chemotherapy was the fact that my PSA had steadily reached 104 and rising.
Throughout the chemo the PSA dropped after each session to its lowest at the completion 0.05 which made me feel it had all been worth while, only to find now after only 3 months it has risen to 13.5. I'm still on 3 monthly implants of zoladex, which I'm told will continue,but don't really know for how long.
I do hope what you say is true,that the chemo has done some serious damage to the cancer cells,and any further treatment will have a bigger impact. I will have to wait and see what the scan results prove, such a worrying waiting game.
You are correct saying I had rejoined,purely due to the fact I had lost all my log on details and felt so under the weather most times,found it difficult to communicate.
Do hope your husband John and Fathers conditions continue to improve.
Kindest Regards
Alan
User
Posted 10 Dec 2015 at 11:16

Hi Alan,
I can't think what chemo in a tablet form would be, unless it's Enzalutamide (Xtandi) or Abiraterone. As I understand it, they work in a hormonal way, although Tony still has to continue with the hormone injections (Decapeptyl in his case) to prevent testosterone being produced. In our area, Enzalutamide is dispensed from the hospital's chemo unit, so perhaps they consider it a form of chemo, but it is certainly simpler and with fewer side effects than Docetaxel. It's just four large capsules to swallow, taken together, once a day. Tony gets a bit more tired than before, but that's no big deal, he just sleeps when he needs to, and when he's awake he feels fine. No hair loss, no food restrictions, etc.

Hope your scan results are not too disheartening, and that you will soon find yourself on some new treatment to give you another stable period with the cancer under control.

Marje

User
Posted 10 Dec 2015 at 12:15

Originally Posted by: Online Community Member
Hi Lynne
The reason I was given to undergo Chemotherapy was the fact that my PSA had steadily reached 104 and rising.
Throughout the chemo the PSA dropped after each session to its lowest at the completion 0.05 which made me feel it had all been worth while, only to find now after only 3 months it has risen to 13.5. I'm still on 3 monthly implants of zoladex, which I'm told will continue,but don't really know for how long.
I do hope what you say is true,that the chemo has done some serious damage to the cancer cells,and any further treatment will have a bigger impact. I will have to wait and see what the scan results prove, such a worrying waiting game.
You are correct saying I had rejoined,purely due to the fact I had lost all my log on details and felt so under the weather most times,found it difficult to communicate.
Do hope your husband John and Fathers conditions continue to improve.
Kindest Regards
Alan


 


Sorry Alsn, what I was tip-toeing around was whether you understood that chemo was not going to cure you? Under NHS guidelines it is only given to men in the final stages of PCa as a way of slowing down progression although newer research and trials are indicating that given in the 'incurable but not yet terminal' stage it is very good at disfiguring the cancer cells so that other treatments work better. It sounds like you are in this second group and so the aim of the treatment was to damage but this might not show up on the PSA tests.  


 


Think about it like a car engine - most treatments are like draining all the petrol out of the tank so the car won't start. Chemo is like removing one of the wheels so that if the car starts, it won't go very far

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Dec 2015 at 12:40

Hi Lyn
not posted before but you seem to talk such common sense and make things easily understood my husband was diagnosed in March advanced with bone spread put zoladex October found out not working now on chemo Doseataxel but really knocking him about but reading your post makes me feel it will be worth it

User
Posted 10 Dec 2015 at 13:39

Thank you Christmas - I am rather pleased with myself at this idea of PCa treatment being like a car. What I was thinking afterwards was that the PSA test is like the fuel guage - as the cancer treatment works (the petrol is drained out of the engine) the PSA goes down (the fuel guage goes down).

Unfortunately, there are going to very occasionally be people whose fuel guage is broken so the PSA test is not reliable - such as my father in law and Si whose fuel guage says nearly empty even though it is full. There are also rare people driving electric cars who don't have a fuel guage and so all normal rules are put aside.

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