Hi everyone,
My bio is up to date. My husband was diagnosed July 2019 with incurable prostate cancer spread to lymph nodes, Gleason 9.
He had early chemo, radiotherapy and has been on prostap.
After radiotherapy ended, his PSA was undetectable and remained so till now.
It has today tisen to 2.17 which feels a large rise from undetectable.
His specialist nurse has ordered a repeat blood test in 4 weeks, the day before we go on holiday.
I felt he'd done really well so far on prostap only and I know there are other things to be tried, but I feel almost as bad as the day he was diagnosed.
Any experience of similar or advice is welcome.
Edited by member 20 Apr 2022 at 18:05
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User
Hello
My husband had a similar situation.
He had Chemo, Radiotherapy and 3 Monthly Zoladex.
A year a half ago his PSA went up to just over 2
He had a PSMA PET Scan which revealed the cancer had returned, confined to the Prostate.
The Oncologist prescribed Apalutamide, his latest result last week was 0.01.
User
hopefully a chat with the nurses will allay your worries a little, if it's any help I was told my PSA had to rise in 3 consecutive tests before they would worry, hope this helps and enjoy your upcoming holiday airyarris
User
Sorry to hear of this rise in your husbands PSA. I know it’s a real worry and I would be exactly the same, but the one good thing is there seems to be so many options with PCa that I’m sure there will be lots they can do. Hopefully on the next test it will have stabilised and you can get some answers x
User
Hi Mrs Mas
Exactly the same happened to us.
2.5 years with a 0.01 PSA and then all of a sudden three consecutive rises over 9 months. We got to a PSA of 2.5 before the ONCO put my OH on enzalutamide. He’s been on this for over a year now and we are back down to 0.01 again and he is tolerating it really well.
It’s a very worrying time I know but there are still plenty more options for him so please don’t loose faith Xxx
Debbie xxx |
User
Dear Airy,
Lovely of you to post your positive 'bobbing about' story, thankyou. I will keep this thread updated. X
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User
hopefully the PSA will have dropped by the next test, if I remember correctly my PSA kept fluctuating whilst I was just on Hormone treatment, just enjoy your 6 weeks grace and the current warm weather
Airy
User
So sorry to hear this MAS. Keep strong and sending wishes
User
Really sorry to read your post, hopefully oncology will come up with something positive for you
meanwhile keep your peckers up.
User
Sorry to read this Mrs MAS. It is scary dealing with it. I hope oncology can come up with a plan.
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User
Hi all, not sure if this will be of any help but my situation is; PSA undetectable after 7 year post initial HT & RT but has risen steadily from January to 5.1 now. I delayed further treatment hoping the reading would drop. Just stared on 3 weeks of bicalutamide and 3 monthly prostap injections. Big mistake delaying treatment, not sure what's next, fingers crossed.
User
Good luck to you both MAS. I guess I’m a bit behind you. I’m 2 years into a 5 yr diagnosis and I’m thinking my psa has hit its nadir now ! I too have Enza in the bag. It might work for ages 🙏
User
Sorry to hear the news Melissa hope they can get the PSA back under control again.
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User
Would it be worth asking for a PSMA PET scan to see what is shows to help plan next steps?
Hope you are OK, must be a worry.
User
Mrs Mas , would a call to the nurses on this site be of benefit, it is sometimes easier to have a two way conversation rather than to and fro with posts. Do you know what is his " normal" PSA should be after the treatment he has had , is he still having treatment.
Thanks Chris
User
Hi Chris, yes probably a good idea.
We were told at the beginning that undetectable was good and a rise means cancer active again.
Having a panic, thanks for replying.
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User
Hello
My husband had a similar situation.
He had Chemo, Radiotherapy and 3 Monthly Zoladex.
A year a half ago his PSA went up to just over 2
He had a PSMA PET Scan which revealed the cancer had returned, confined to the Prostate.
The Oncologist prescribed Apalutamide, his latest result last week was 0.01.
User
hopefully a chat with the nurses will allay your worries a little, if it's any help I was told my PSA had to rise in 3 consecutive tests before they would worry, hope this helps and enjoy your upcoming holiday airyarris
User
Thanks Lillie and airyarris for sharing with me. X
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User
Sorry to hear of this rise in your husbands PSA. I know it’s a real worry and I would be exactly the same, but the one good thing is there seems to be so many options with PCa that I’m sure there will be lots they can do. Hopefully on the next test it will have stabilised and you can get some answers x
User
Following from my first post the plan is to re test PSA in 4 weeks and 8 weeks before the decision to add another medication is taken.
Feeling scared as I guess the next thing would be a second line treatment like enzalutamide which from what I've read can last 12 months or so. Also heard about bicultamide being successful for a while, but if you have that I think you may not be allowed to have enzalutamide afterwards?
Happy to be corrected if I'm wrong.
My bio is up to date should anyone want to read it.
Thanks
Edited by member 24 Apr 2022 at 10:16
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User
Hi Mrs Mas
Exactly the same happened to us.
2.5 years with a 0.01 PSA and then all of a sudden three consecutive rises over 9 months. We got to a PSA of 2.5 before the ONCO put my OH on enzalutamide. He’s been on this for over a year now and we are back down to 0.01 again and he is tolerating it really well.
It’s a very worrying time I know but there are still plenty more options for him so please don’t loose faith Xxx
Debbie xxx |
User
Hello Mrs Mas
Sorry the system won't allow me to PM you.
My husband has been on Apalutamide for a year and a half now.
The Oncologist estimated it would work for him for a year to a year and a half.
So we are heading for 2 years and the PSA is 0.01.
I do get very nervous every 3 months, especially now he's been on them 18 months.
My husband has Advanced PC, spread to Pelvic & sitting bone, pelvic lymph nodes.
His initial PSA was 583, he had Chemo, RT & has 3 monthly zolodex.
User
Hello Lillie1, so good to hear your husband is doing well.
Mine has now got a CT Thorax, abdomen and pelvic scan wirh contrast booked for this Saturday 30th April.
It all feels a bit quick, again.
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User
Hi Mrs Mas, just a line to say I've been on Ezalutamide now, once the initial side effects settled To me I am feeling fine PSA bobbling about 0.2. fatigue is about the worst problem and getting a belly (as the enza nurse said my body is feminising) hot flushes bearable and the best of all the oncologist said about 3 months ago I don't want to see you for a couple of years, so in her words we are making memories whilst we are fit enough to get some sun
Good Luck with the scan
Airy
User
Dear Airy,
Lovely of you to post your positive 'bobbing about' story, thankyou. I will keep this thread updated. X
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User
Hi all,
We had the results appointment today which was a mixed bag.
The PSA which triggered these tests was 2.17 in April, having been undetectable for almost 3 years.
Re staging scan 30 April showed nothing of significance, nothing more than the staging scan he had after chemo and RT in 2020. I feel this is good.
PSA in May gone down to 1.78 but in June up to 2.6. I think this is odd but this shows the cancer is active.
Our specialist nurse will re test PSA in 6 weeks and if a further increase will be put on additional medication at that point.
So we have 6 weeks grace.
Edited by member 15 Jun 2022 at 19:09
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User
hopefully the PSA will have dropped by the next test, if I remember correctly my PSA kept fluctuating whilst I was just on Hormone treatment, just enjoy your 6 weeks grace and the current warm weather
Airy
User
Hi all, just got the latest PSA with another rise to 4.71.
They are arranging a face to face with the oncologist, and to have another PSA as well.
The specialist nurse is also adding bicultamide for the time being.
Feeling scared all over again now
Edited by member 02 Aug 2022 at 11:07
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User
So sorry to hear this MAS. Keep strong and sending wishes
User
Really sorry to read your post, hopefully oncology will come up with something positive for you
meanwhile keep your peckers up.
User
Sorry to read this Mrs MAS. It is scary dealing with it. I hope oncology can come up with a plan.
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User
Update, still awaiting oncology appointment but recent PSA after nearly 6 weeks on bicalutamide has come down from 4.71 to 2.85.
Edited by member 14 Sep 2022 at 21:17
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User
That’s good news Mrs Mas, I’m hoping my husband responds well on Bicalutamide he’s only just starting it, can I ask did your husband have scans before starting it
thank you
ann
User
He did but way before he started bicalutamide, end of April he had a CT scan, psa kept rising and started bicualutamide 2 August.
Hope it works for Yr husband too.
Edited by member 15 Sep 2022 at 15:12
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User
Phew That's good news hope PSA keeps falling, and best of luck with Oncology
User
Good news MAS !! V pleased for you both
User
That’s good news Mrs MAS.
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User
Great news Melissa, delighted for you both 👍
User
Hi all, not sure if this will be of any help but my situation is; PSA undetectable after 7 year post initial HT & RT but has risen steadily from January to 5.1 now. I delayed further treatment hoping the reading would drop. Just stared on 3 weeks of bicalutamide and 3 monthly prostap injections. Big mistake delaying treatment, not sure what's next, fingers crossed.
User
Hi all,
Just an update
My husband has been getting much back and hip pain so we requested a psa test ahead of the 3 monthly appt in December
After the initial drop on bicalutamide, his PSA has risen to over 5 from 2.85, 8 weeks ago.
Waiting for an oncology appointment now, he hasn't been told to stop bicalutamide. I expect enzalutamide next.
Hope he has as good a response as Airy if and when he starts it.
Edited by member 09 Nov 2022 at 22:22
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User
Good luck to you both MAS. I guess I’m a bit behind you. I’m 2 years into a 5 yr diagnosis and I’m thinking my psa has hit its nadir now ! I too have Enza in the bag. It might work for ages 🙏
User
I hope the Enzalutamide does a good job if that is the next treatment Mrs Mas.
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User
sorry to hear the PSA has risen, hope the next treatment reverses the rise and gives you a break
Look after yourselves Airy
User
Sorry to hear this, hopefully the next treatment will work, it’s so stressful waiting for appointments
ann
xx
User
Really sorry to hear this. Hopefully they can get him on new treatment soon and it will work for a very long time x
User
Sorry to hear the news Melissa hope they can get the PSA back under control again.
User
To have a rise in just 8 weeks is very disappointing. Hopefully, plan B will be effective and sustained.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Hi all,
My husbands oncologist has started him on abiraterone today and stopped the bicalutamide. Also has a bone scan next week.
As he is diabetic I thought he'd be given enza so that is what I researched.
If anyone has any experience of abi, please let me know.
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User
Hi Mrs Mas, sorry your O/H didn't get put on enzalutamide as you hoped no doubt the oncology people had there reasons for this, the main thing is this should stabilise the PSA readings from now on. Hope you get some replies asking for others treatment with this drug
Gently Hugs and keep smiling
Airy
User
The issue isn't whether he has diabetes, it is the treatment he has for diabetes that matters. Is he on tablets / insulin or does he manage it through diet control?
I assume he is also having prednisone as well? Did you remind the onco about the diabetes?
Edited by member 27 Nov 2022 at 19:37
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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User
Hi Lyn,
He is on several tablets for it, but not on insulin.
I did remind her and she said to have the diabetes monitored more closely.
He was given the steroid too.
I started a new thread on it , because this one has got long to follow, thanks for replying.
Edited by member 28 Nov 2022 at 09:17
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User
Thanks Airy and Lyn.
I'll put any updates on the other thread.
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