Huge rise in PSA

User

Posted 04 Dec 2015 at 18:17

My Husband was diagnosed with late advanced metatastic prostate cancer about 3 months ago. He was started on Decapeptyl injections. He has had two rounds of Chemotherapy. He takes prednisolone twice daily and the other drugs that go with his Chemotherapy on the date of treatment.

When he had the last treatment 10 days ago they didn't have his latest psa. So I called for it today and it is 750. Originally when he was diagnosed the level was over 2000. The first reading was 2535, Second 1353, third 170 and the latest 750.

I am really worried at this huge rise. Up until now it had been going down quite quickly. We had expected that the next couple of tests would not show such a dramatic drop as the first. But for it to be going up is worrying.

Does anybody have any experience of this? I suppose I was hoping that the positive news would continue particularly as he is experiencing some side effects and needed a boost. All of this on a weekend as well which means that we can't get to speak to anybody who may be able to tell us whether this is to be expected.

Any help or info would be great

Thanks

Carol

User

Posted 05 Dec 2015 at 15:22

Carol

Hi worrying times for you both I am sure.

Your Husband's PSA has reacted initially to the Hormone injections and reduced significantly and quickly.

Unfortunately his diagnosis was metastatic and advanced so the cancer tends to be very active.

Chemo can actually rattle it up pretty badly and it is not at all uncommon for the cancer to try really hard to fight back during early chemo.

I know this will be tough advice but you probably need to check things out with your medical team on Monday.

Try to sit on your hands until then as they may just say it is far too early after just 2 cycles of chemo to give an answer.

I hope someone else can come up with a better explanation from their own experiences.

Best wishes

Xxx

User

Posted 27 Dec 2015 at 10:19

Carol

Hope you are remembering to look after yourself as well as supporting your Husband.

I know that PSA results In advanced metastatic cancer can be erratic. Sometimes the medical team will tell you not to use them as the only guide to how treatment is or isn't working, but to also take into account how your Husband is feeling in general. In your first post you said PSA had gone from 170 to 750 now you have said that the team think the 170 in the series was an error so I am assuming the 750 is the latest. If so that is still coming down and in the right direction from the starting point.

Do you think you might have made a mistake with the name of the drug your Dr has prescribed to help your Husband to sleep, You have said abilterone , I am not a medical person but I have not heard of a sleeping drug with that name. It sounds very much like Abiraterone which is actually a specialist drug for treating Prostate Cancer.

If you can check that and post again it may help us to give you some more information.

As far as you know is your Husband part of any clinical trial for his PCa, there are several one of which is called the stampede trial.

My next question is about the pressure he has in his head, by this do you mean a physical feeling of pressure or a difficulty in coping pressure?

Obviously there can be quite different responses from people here for the differing scenarios.

Keep posting and try to make sure you take some time out to look after yourself as well.

...

All the best

User

Posted 31 Dec 2015 at 12:57

Hello Carol.
I'm sorry that things are so difficult for you and your husband at the moment.

Could the pressure he feels be stress related to you think (since the docs are saying PC doesn't normally go to the head)

I hope he enjoys his single malt, and I'm glad you are taking care of yourself too. I would imagine you're fine when you're with him because you are occupied but when we are less busy our minds can go into overdrive.

Best wishes
Sandra

We can't control the winds - but we can adjust our sails

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User

Posted 05 Dec 2015 at 15:22

Carol

Hi worrying times for you both I am sure.

Your Husband's PSA has reacted initially to the Hormone injections and reduced significantly and quickly.

Unfortunately his diagnosis was metastatic and advanced so the cancer tends to be very active.

Chemo can actually rattle it up pretty badly and it is not at all uncommon for the cancer to try really hard to fight back during early chemo.

I know this will be tough advice but you probably need to check things out with your medical team on Monday.

Try to sit on your hands until then as they may just say it is far too early after just 2 cycles of chemo to give an answer.

I hope someone else can come up with a better explanation from their own experiences.

Best wishes

Xxx

User

Posted 05 Dec 2015 at 16:03

Thank you for this. I did manage to speak to the duty GP late yesterday. I wanted to check if the number they had given us was a mistake but it wasn't. I haven't told my husband yet. I am really worried but he is not feeling great and we can't do anything until Monday. No point in both of us worrying all weekend. I will call the oncology nurse on Monday and see what she says. Once we have a plan in place to deal with it or an explanation then we can tell him.
They are very good at the local hospital.

I thought it may be something like that as we knew that the cancer is aggressive. Also some of his symptoms that were going away have come back. The original diagnosis was T3b/T4N1M1a.

Any help is greatly appreciated. Why do things always happen at the weekend?

Thanks

Carol

User

Posted 05 Dec 2015 at 17:10

Hi Carol
I to have been diagnosed with APC and have had huge differences in psa levels(please see profile Jackdusty@C). Who and where do I get diagnosisT3b/T4N1M1a from as I have not been told this yet. I am also getting loads of side effects. You have come to the very best site for help and advice so be strong and look after yourself.
Best wishes
RichardK

Jackdusty@C

User

Posted 05 Dec 2015 at 20:50

Hi Carol,

I can,t offer any advice but from someone else in the met club I just wanted to say hi and we know what you are going through.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 26 Dec 2015 at 23:26

Sorry for the late reply. Life has been so busy that I missed it. The diagnosis was given to us by the urology/oncology nurse. She went through a leaflet with us and at each stage showed us where we were. He is undergoing a 5 month cycle of Chemotherapy. Every three weeks. The team are ignoring the 170 psa result as a rogue reading. Or a typo. So if we take that out of the equation then the trend is slowly down. We are in Central Scotland. I can't fault the people who are looking after us at all. It is a well oiled machine and we are just taken along. My OH does have some problems sleeping which the Doctor has prescribed abilterone for. He also has a feeling of pressure in his head which most people don't know how to deal with but which does cause him more problems than the cancer.

Thanks for your help

Carol

User

Posted 27 Dec 2015 at 10:19

Carol

Hope you are remembering to look after yourself as well as supporting your Husband.

If you can check that and post again it may help us to give you some more information.

As far as you know is your Husband part of any clinical trial for his PCa, there are several one of which is called the stampede trial.

My next question is about the pressure he has in his head, by this do you mean a physical feeling of pressure or a difficulty in coping pressure?

Obviously there can be quite different responses from people here for the differing scenarios.

Keep posting and try to make sure you take some time out to look after yourself as well.

...

All the best

User

Posted 31 Dec 2015 at 11:31

I did get the name of the drug wrong. It is amitriptilyne. The Doctor told me that it would help with pain. Perhaps his mood as he was a bit down convinced he was dying, and help him to sleep. The biggest problem that he seems to have apart from the obvious is that he has a feeling of pressure in his head. I have asked him to describe it and it seems like to him it feels like he could do with a little hole drilling and letting pressure release. A bit like a pressure cooker. He has been scanned twice in his head area now and it has not shown up anything. Our Doc says that prostate cancer cells don't normally go to the head. The pressure in his head has been stopping him from sleeping and if you add that to the general fatigue he is feeling that doesn't help.

He has gone from somebody who had only ever been in a hospital to visit someone to the exact opposite. 71 years and his medical records only had about a page. So we are taking each day at a time. I have managed to persuade him to do just that. So sometimes he misses his morning walk with the dog. The dog doesn't help as he is our beautiful beardie but he used to be very independent. Slept downstairs only coming up to see us when he wanted food or water or walks. Beardies are very bossy as ours is a working one. He now rarely leaves our side. Staying in the lounge with us and sleeping on the floor of the bedroom. My OH is convinced that he knows something we don't. I think that he is just instinctive and knows something is not right.

His PSA has been tested three times now since the rogue result and the last two were 650 and 643. So going down. They were taken within 10 days of each other. The Doctor did say to me that the response to the hormone injections wasn't as good as they wanted but at least the trend is down.

His hair loss has stopped as well. Which has made him think that the chemotherapy has stopped working. Not that he wants to lose all of his hair. I got him to speak to the Chemotherapy nurses and they said it doesn't always go.

This is a real rollercoaster ride. At least we have a GP who is sympathetic and the oncology nurse and the rest of the team are fantastic. If we need results that the GP doesn't have he will get them for us. He has me doing all the things that he used to do like cooking the dogs dinner and getting it ready for him. Taking him for evening walkies. I think in his head he is making sure that we will be ok if the worst happens. I am looking after myself. I find that I am fine when I am with him but pretty miserable when I am not. Not sure why that is.

Anyway the New Year Looms. I have bought him a great single malt to bring the New Year in. I know we probably shouldn't drink, but this is Scotland and New Year. We need to look forward to the future.

Thanks for your help.

Carol

User

Posted 31 Dec 2015 at 11:49

Hi Carol,

Amitriptyline is an anti-depressant, one of the older sort. In small doses it is sometimes used for nerve pain, and can be quite sedating. One thing to watch out for is that it can cause quite a few side effects, dry mouth and blurred vision being two common ones. I'm typing this with my retired community mental health nurse hat on ! Just worries me how these medications are handed out without clear explanation. Keep up with the dog walking, dont know what I would have done without my three border collies !

Fiona. x

User

Posted 31 Dec 2015 at 12:57

Hello Carol.
I'm sorry that things are so difficult for you and your husband at the moment.

Could the pressure he feels be stress related to you think (since the docs are saying PC doesn't normally go to the head)

Best wishes
Sandra

We can't control the winds - but we can adjust our sails

User

Posted 31 Dec 2015 at 17:56

Tattiehead, if there was ever a time when a small dram is deserved, it is tonight!

Re the pressure in his head - what he is describibg sounds a bit like when I get migraine - it isn't always a pain, more like a sense of something about to explode or burst. My migraines are much worse when I am stressed or on medication. I hope that the anti-depressant element of the sleeping tablet helps him in some way.

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

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