Expecting too much too soon?

User

Posted 08 Dec 2016 at 15:40

Hi, My name is Amanda and my husband Dave recently got diagnosed with advanced metastatic PC in February this year, he was 52 at the time, now 53.

Wow, what a mind blowing year this has been, Dave didn't have any 'typical' symptoms but cutting a long story short after our amazing doctor did a blood test his PSA reading came in a 1050!

I will cut to the chase and tell you where we are up to as of today.

Dave is on the STAMPEDE trial at the Christie hospital, and I have to say they have been fantastic.

Diagnosis: T4 M1 N1 - Gleeson 5 + 4

Dave has had 6 x rounds of chemotherapy docetaxel, ( finished Sept) also 20 x fractions of radiotherapy ( finished Nov). He is also on 3 x monthly HT of Prostrap 3.

All treatment has now been completed, and during his chemo treatment his last PSA reading which was back in September was 5:2, (it had been as low as 4:9).

We have attended a 12 week 'chemo check-up' appointment this week back at the Christie to see our oncologist who is a lovely lady. She said she was pleased with how Dave looked and how he was feeling after all the gruelling treatment he had undertaken. Dave has continued to work through all of his treatments taking no time off at all and I really don't know how he has done this, he's been amazing.

As you can imagine we were both really apprehensive and wanted to know what his PSA level was now, however the bloods didn't come back until the next morning, and to our shock when Dave rang up for them his PSA was back up to 10:5!! Dave was extremely upset as we both were, and was very very disheartened.

I managed to get in touch with our specialised nurse and told her our concerns, she immediately rang our oncologist to inform her of our upset. She rang me back to say that our Oncologist wasn't at all perturbed by this result and this was to be expected seeing as he has only just completed his RT 4 weeks ago. They told us that sometimes there can be a 'bounce' where the PSA reading will increase but this is a 'false' reading. She told us not to worry, have a nice Xmas and will see us both on our next planned appointment which is the 31st Jan, where we will have another look at his PSA.

I'm apologise if I seem to have missed lots of information out or have gone on a bit, but is there anyone that has had a similar experience to this regarding the jump in PSA readings.

We are still both struggling to come to terms with the fact the Dave has got cancer and as you all know, your life is turned upside down by the blasted evil disease.

Any thoughts or information you have will be greatly received. Dave did start his own blog on this site back in May but you know what you men are like he doesn't like talking about it and hasn't been on since, so here I am high-jacking it instead!!

Thanks everyone in advance.

User

Posted 08 Dec 2016 at 16:05

The jump is fairly common, it is called tumour flare and is basically the cancer cells working harder when they realise they are under attack. It commonly happens when the hormones are started, at the end of radiotherapy or after chemo.

Can you just clarify - you say all treatment is now completed but is this a typo? Is he still on Prostap?

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

User

Posted 08 Dec 2016 at 16:37

Thanks Lyn for your prompt response, yes, sorry for the confusion he will continue on the HT until such time as this particular one becomes in affective.

We are hoping this will be for some time yet. He initially commenced on the HT in March this year.

User

Posted 08 Dec 2016 at 17:29

Just to say "Hello and welcome" AK.

We went a different route to your husband being able to go for seed brachytherapy but we were also warned of "the bounce!" which worried us too but the doctors don't seem phased by it.

I hope you can have a reasonably good Christmas., Cancer is hard at any time of the year but when everyone else is celebrating in style it seems to make life so much harder.

Keep strong for your man.

Best Wishes

Sandra

*****

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

User

Posted 09 Dec 2016 at 23:44

Hello Amanda

My husband was diagnosed in October with a PSA of 6700. He also didn't have any recognisable symptoms. We are very slowly coming to terms with the diagnosis but finding it very difficult.

He has just had 2nd chemo and is also having HT.

I still have a huge amount to learn about this illness so not much help but I have read of lots of cases where the PSA goes up and down.

I hope you manage to have a good Christmas x

User

Posted 12 Dec 2016 at 12:58

Hi
Amanda is my gorgeous wife who has been my rock all the way through this hell. With her help we have managed to have nearly a normal life and hope to carry on like this. We all need to remember your partner is going through this as well and they need the support as well.
The main thing is PMA positive mental attitude

Good luck to everyone

User

Posted 12 Dec 2016 at 13:11

Hi Sallyyy,

I know it is a shock and to be honest we are struggling to come to terms with it ourselves. We found out in February but are still finding it extremely hard.

You didn't mention your OH age?, we were told that my hubby was very young to have got this kind of cancer (52), however, it doesn't matter what age you are it is still a massive shock.

As I stated previously my hubby had a course of 18 x cycles of docetaxel chemo, followed by 20 x fractions of RT which he had every day for 4 weeks. The effects of the RT were quite unpleasant, and to be honest he is still struggling now with the side effects. He is also having HT Prostrap 3 which he has every 12 weeks.

So for us now we have to wait until the end of Jan for our next follow up appointment with our Oncologist, hopefully by then we will have another PSA reading and fingers crossed it will have gone down. The Christie have been fantastic and we were fortunate enough to be offered to take part in the Stamped trial, which we obviously snapped up.

Its now a case of 'living with cancer', and trying to have some kind of 'normality' in your life. We have managed quite well to be honest and we find that a good sense of humour helps us through our darkest moments.

If you have any questions about this dreadful disease then please ask away and will try and answer you the best I can, I'm no expert but a bit further down the road than yourselves.

Remember PMA ( positive mental attitude).

Take care.

Amanda

User

Posted 12 Dec 2016 at 17:32

Hi Amanda

My husband is 62 and I am 46. We have been together 25 years and have 17 yr old twin boys.

My husband has always been very sporty and fit but did have a disc injury in his back which we think might have masked bone pain.

He is seeing the Stampede team at the Marsden at the end of December but hasn't had radiotherapy mentioned yet.

The oncologist wants him to have 6 cycles of docetaxel over 18 weeks - depending on his white blood count which is genetically a bit low.

I sway between reading too much - and scaring myself - and trying to just focus on the positive.

Anyway - hope you manage to get a break over Christmas and some lovely normality x

User

Posted 13 Dec 2016 at 00:18

Amanda

I'm 46 and have just had my prostate removed, so I'm on a very different pathway to your OH. I just wanted to send best wishes to you both, and to everyone else.

Walter

User

Posted 13 Dec 2016 at 07:11

Thank you very much Walter, hope all goes well for yourself and that you can hopefully have a speedy recovery x

Amanda

User

Posted 14 Dec 2016 at 12:09

Hi Guys,

We are a little disturbed as yesterday we received a letter from our Onco to say that our follow-up appointment on the 31st January has been brought forward now to the 5th January, I have previously mentioned that Dave had his PSA level taken on the 6th December and it has risen from 5:2 up to 10:5, and that is after all his chemo and RT had been completed.(RT completed 2nd Nov)

We have been asked to have a routine PSA blood test at our Doctors ( 30th December) and if the results show that his level has dropped then we can attend the original appointment on the 31st Jan, however, if it has risen again then we will need to attend the appointment on the 5th Jan.

As you can imagine we are now worried sick, especially as they have called us in for an earlier appointment. We are trying to stay positive but are now worried sick as don't know if his PSA will have dropped or not. Surely after all the treatment he has undergone, it should have dropped???!!

If anyone has any advice, or experience of this happening to them then please let us know as we are going to go crazy over Xmas!

Merry Xmas!

Amanda

User

Posted 14 Dec 2016 at 14:56

Hi Amanda - the waiting is so awful and I really sympathise. I will be keeping my fingers crossed that the test on the 30th shows another fall. Would it help to tell yourself that the medical team are obviously on the ball and ready to act quickly if needed (so you don't have the added stress of needing to chase them to see you earlier if needed.)
x

Edited by member 14 Dec 2016 at 14:56 | Reason: Not specified

User

Posted 14 Dec 2016 at 15:19

I know and being under the Christie hospital and under the stampede trial has got to be a positive thing. We are just concerned that it doesn't seem to have gone down at the minute even after all the treatment he has had. We just want to see results to confirm that the treatment has worked. Oh well, we are just going to have to get on with it and try not to think about it for now (difficult! !) Anyway how are you and your OH getting on?

User

Posted 14 Dec 2016 at 15:30

Thank you asking about my husband. He had his 2nd chemo last week so just tired this week.

I am the worst person to advise on keeping calm re blood tests etc. Calm is really not one of my skills :-) I wish I could be more accepting about it all but I'm not sure that is ever going to happen to be honest!

I really hope that you manage to get some rest and relaxation over christmas x

User

Posted 14 Dec 2016 at 15:51

The thing is you have only just found out in October so you are really 'newbies' at this. Mind you it's certainly a roller coaster of a ride and I want to get off most of the time!! You will learn to cope with it as the time goes on, i think it's the accepting it all which is the hard bit. Your OH needs you to be strong and so do your boys, and sometimes the weight of this is emence. We all have to try and remain positive, granted life will not be the same but we can all get through this. Let's stay positive.

I will keep you updated. Your OH treatment will be over and done with before you know it and it just becomes routine until it's all done, just tick then off one at a time.

Take care and chin up. X

User

Posted 14 Dec 2016 at 16:15

Thank you - you too. And yes do keep updated. I'll be thinking of you both x

User

Posted 15 Dec 2016 at 08:29

Amanda, in your shoes I would call the nurse specialist and ask whether the testosterone was also measured at this most recent blood test. If not, ask the GP for that to be added to the December 30th test. It should be at or below 0.69

Assuming he is still on Prostap, the rise in PSA could be
A) the last injection was given wrongly (could they have given him a 4 week dose rather than a 12 week dose by accident?)
B) the Prostap was from a faulty batch
C) this particular cancer can survive without testosterone
D) your OH has not yet got down to castrate level and may need a different or additional hormone treatment
E) or it could be as your oncologist first said, simply a bounce as the cancer cells fight against the chemo. Dying cancer cells give off more PSA.

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

User

Posted 15 Dec 2016 at 08:58

Thanks so much for your advice. It's just so disappointing as we expected a fall after everything he had gone through. He has an appointment on the 30th December at the doctors for a PSA blood test but we won't get the results until the 3rd, so it's going to be a long wait.

I know we have to stop worrying but it's inevitable.

Thanks very much for your comments.

All the best.

Amanda

User

Posted 15 Dec 2016 at 11:46

Well Guys the plot thickens!

Dave attended an appointment on Tuesday this week at the Royal Preston Hospital where he underwent his RT treatment. it was just a follow up etc. They said he was doing really well and were pleased with him. They took a blood test and said they would check his PSA level.

In Dave's wisdom he decided this morning to ring them and get the results, sometimes you have to be careful what you wish for. His PSA has now shot up from 10:5 ( 6h Dec) to 15:00!!!!

AS you can imagine we are now extremely worried. We have spoken to our specialist nurse at the Christie Hospital this morning who has got in touch with our onco, again she has said she is not overly worried ( wish we were as confident) as yes the PSA is a good indicator as to what is going on, however the well being of the patient was also an indicator, and Dave was doing great, working, going to the gym etc and was feeling generally very well.

However to put our minds at rest she would arrange for a scan just to see what was going on, and to still attend the appointment on the 5th Jan as previously arranged.

So now, we are in a worse position as the PSA has gone up since last week??!!! We will still get a blood test done on the 30th December and hope and pray that this has gone down, but who knows?

The thing is with all this, you have to be very patient and that's not one of our strong points :(

Anyway as it goes on I will keep you updated.

Cheers

Amanda

User

Posted 03 Jan 2017 at 15:22

Happy New Year everyone, hope you all enjoyed yourselves.

Well our story continues, Dave's current PSA was 15 and our oncologist advised that Dave have another bone scan to try and find out why it has continued to rise since he has completed all his chemo and RT. The scan took place at The Christie on the 22nd December, and we have an appointment with our onco again on Thursday 6th January to discuss the results. She also advised we have another blood test on the 30th December to see if it has gone down. Well, what do you know...... it hasn't gone down its gone up again!!! now it showing 21.5, testosterone level 0.6.

Any thoughts anyone?

So, here we are again continuing to play the waiting game until our appointment on Thursday this week, 2017 hasn't started off as we had hoped.

User

Posted 03 Jan 2017 at 17:32

Happy New Year to you and all on the forum.

Just wondering whether this could be attributed to the bounce after RT or possibly doing something before testing that you are not supposed too but which they don't always tell you ie have sex,bike ride,lots of exercise? Whatever is the cause I wish you all the best for Thursday and please let us know how you get on. BTW if your name is your own you may wish to change to something more private as this is an open forum. Best wishes,Elajai .

User

Posted 03 Jan 2017 at 17:46

So sorry to read your latest news - the PSA rising so rapidly while he is apparently still below castrate level suggests that his particular cancer is not reliant on testosterone to survive. You can only wait to hear what the specialist thinks but I would have two questions in mind that I would hope to have some grasp of by the end of the meeting:-
a) was it definitely defined as adenocarcinoma during the diagnosis stage - or could it be one of the more rare types?
b) does the onco believe that it is already castrate-resistant in which case, would a move to enzalutimide or abiraterone be timely?

Sex, bike riding etc would not result in this rapid consistent rise. There is very little data at present on this kind of early use of chemo so there is I suppose still a possibility that the cells are just screaming in objection to the chemo damage they have suffered?

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

User

Posted 03 Jan 2017 at 18:39

Thanks Lyne.sorry for the confusion with me having two different posts etc,I'm still quite new at this and getting mixed up!! Ha ha.

I agree with you and don't think this rise is something to do with anything dave is doing that he shouldn't. It is very concerning and very worrying but all we can do now is wait until Thursday to see what our oncologist says and obviously what the recent scan results show. I will keep you posted, and thanks again for yours and everyone's advice etc.

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