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Newbie...husband diagnosed in April

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User
Posted 16 Jun 2018 at 21:48

Hi..I'm new to this..my OH was diadnosed with advanced pc at the end of march 2018. His PSA was 26.3 it has spread to the seminal vesicles. He has been on prostap injectiobs and has chosen to have chemo. He is also now on the stampede trial. His last psa (after only 4weeks of HT) was 8.2


My question is how long can/does the HT work for. Is it months a year or longer.


Thanks


Kazzy

User
Posted 17 Jun 2018 at 23:54

Originally Posted by: Online Community Member
Kazzy, oh the perils of Dr Google. We can all search for worst case scenarios and scare ourselves half to death. That doesn't help at all. How long on HT? Well, I have a cousin who has been under treatment for 20 years. Nobody can answer your question, because it all depends on the individual. In my case, it worked for a few years before other treatments became necessary, but I still have 12 weekly Zoladex jabs 11 years on, because they provide some benefit; not enough on their own to keep the PSA low but useful anyway. There are lots of different scenarios for the use of HT, as I hope I have shown.

Your OH has had a very good initial response to HT. The PSA will probably continue to fall. Hold on the the facts and stay positive.

AC


Dr Google can also find LOTS of examples of guys with the awful PSA / staging who are still here 15 years later. Keep proactive, keep googling and don' t let high and mighty consultants ever palm you off if you are not happy with treatment.  If in doubt you can always float ideas on here and other similar forums.


 

User
Posted 10 Jul 2018 at 21:48
You don't really need to think about undetectable PSA since your OH still has a prostate. It is more relevant to men that have had the surgery and so should have hardly any PSA in their body.

A 53 year old should be referred to a urologist if his PSA is over 3.0 but 'normal PSA for a man in his early 50s could be anything from 0.5 - 3.0
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 23 Sep 2018 at 18:02

Update on O/H he had now finished his 6 cycles of docetaxel and his PSA is 0.1. due his 3 monthly Prostap injection tomorrow. He had tolerated his chemo brilliantly worst side effects being the bone pain forf about 3  days then the fatigue, he had been lucky enough to work all the way thru his chemo (able to work from home). He had booked his flight back to Sweden for the 8th October, to go back to normal work.


Has a CT scan on the 20th October and next appointment with consultant is 6th November.


As a result of O/H diagnosis his brother got tested and was diagnosed in August, fortunately was caught in time diagnosed on the 14/8 had surgery on the 4/9 and hopefully cured. 


Also would like to praise my sin who had raised £2436 for prostate cancer UK by throwing himself out if a plane 


Finally I would just like to thank everyone and this site couldn't if got thru the last 6 months without it .


Thanks Karen

User
Posted 23 Sep 2018 at 19:11
Great update
Best wishes
Debby
User
Posted 16 Jun 2018 at 21:48

Hi..I'm new to this..my OH was diadnosed with advanced pc at the end of march 2018. His PSA was 26.3 it has spread to the seminal vesicles. He has been on prostap injectiobs and has chosen to have chemo. He is also now on the stampede trial. His last psa (after only 4weeks of HT) was 8.2


My question is how long can/does the HT work for. Is it months a year or longer.


Thanks


Kazzy

User
Posted 21 Jun 2018 at 19:50
Glad alls going well,my OH Gary also had positive results .we’re 2 years after finishing chemo (21/2years from diagnosis) and PSA is still undetectable.
Best wishes for the future
Debby
User
Posted 10 Jul 2018 at 23:14
The "old" undetectable threshold that is still in use in many places is 0.1.. Ultrasensitive PSA testing has now reduced that to 0.001 potentially but as Lyn says your other half still has a prostate so it will never get down to 0.001.


User
Posted 08 Feb 2019 at 18:28
I've had this a few times and put it down to the HT. I'm on Prostap too and have been for a year and 4 months. After thinking it's the cancer spreading and having my good wife try to put my mind at rest of course :-)

I've noticed that when I lower my excercise rate as you need to when having treatment (or a few lazy days) muscle wastage is so much faster now than when not on HT. With all the muscles in your back it's hard to keep them all active and he's been through a lot.

I've found falling asleep on the sofa at a funny angle, sleeping in bed funny or this week building a snowman with my son caused some real unusual back ache and weakness which can last for days.

Hope it's cleared up for him

Matt

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User
Posted 17 Jun 2018 at 00:23

Hi Kazzy,


Welcome to the forum, but I am very sorry that you have the need to join us.


I think you have asked a question which is impossible to answer. There are so many variables and each man is unique in how he reacts to them.


I don't know anything at all about Prostap, I started on Degarelix HT injections. You will see from my profile that Degarelix worked for about 15 months in my case and then I started Abiraterone in conjunction with it. That worked for a further 10 months. But they are my statistics. Your OH's could be vastly different, especially if he has early stage chemotherapy.


I know this is not a lot of help to you, but I do wish you and him well.


Peter

Edited by member 17 Jun 2018 at 00:24  | Reason: Spelling corrections

User
Posted 17 Jun 2018 at 01:49
Peter is correct in his reply. There are different types of PCa and these respond differently to various treatments and other individual factors. It is quite usual for HT to substantially reduce PSA and this is likely to be helped by Chemo. Giving Chemo early is a comparatively recent approach - it looks promising. Good your OH is in the Stampede trial - he will be more closely monitored. There are further down the line treatments should these be needed and new treatments are being trialled or are in development..

It is possible that your OH will have many years to come but at this stage try not to worry how long a specific treatment will work for because some will work differently for some individuals.than for others.

Wish you both well.
Barry
User
Posted 17 Jun 2018 at 09:58
Thank you for replying so quickly. I'm a very positive person, we've had a very lucky blessed life.. Married for nearly 30 years and have 3 amazing children.. So this is our rocky patch to get thru and we will. OH is fit and well people who meet him don't realise he has PC
His consultant is very positive and we both feel very lucky to have her.
Just had a bit if wobble as I was lead to believe you could be on HT for many years.. Then read somewhere that someone on HT was given only 3 years to live.
User
Posted 17 Jun 2018 at 13:24
Kazzy, oh the perils of Dr Google. We can all search for worst case scenarios and scare ourselves half to death. That doesn't help at all. How long on HT? Well, I have a cousin who has been under treatment for 20 years. Nobody can answer your question, because it all depends on the individual. In my case, it worked for a few years before other treatments became necessary, but I still have 12 weekly Zoladex jabs 11 years on, because they provide some benefit; not enough on their own to keep the PSA low but useful anyway. There are lots of different scenarios for the use of HT, as I hope I have shown.

Your OH has had a very good initial response to HT. The PSA will probably continue to fall. Hold on the the facts and stay positive.

AC
User
Posted 17 Jun 2018 at 14:44

Thank you AC... I'm back to my positive self today. Wasn't a good week and nothing to do with OH, but a very close friend had major op for bowel cancer so feeling low because of that then read on one of the threads on here about HT and only 3 years to live.. Made me doubt my positive can do attitude.


OH has blood test tomorrow, meeting consultant on Tuesday, 2nd round on docetaxel on Wednesday.


There's many more families alot worse off than ours so feeling grateful.


No more moaning from me 😁


Thanks


Kazzy

Edited by member 17 Jun 2018 at 20:48  | Reason: Wrong name

User
Posted 17 Jun 2018 at 22:10
Hello Kazzy i have been on postap for 18months also started chemo with it.oncologist told us new research proved it can give men a bit more time.my Ps a at last appointment started to rise slightly . It was 408when diagnosed at last appointment it had risen from 0.3 to 0.6 .Good luck with chemo.All the best Geoff
User
Posted 17 Jun 2018 at 22:15

Hi Geoff, 


Thanks for replying... The consultant told us the same, early chemo along with HT have an extra 2, years.


So we are going along those lines blood test tomorrow results Tuesday and chemo Wednesday. Hopefully see another fall in his psa 🤞

User
Posted 17 Jun 2018 at 22:22

Hi Kazzy


i cant tell you what will happen as we are all different, my story is one of living life to the full despite advanced prostate cancer. I am only just over 3.5 years into this journey , now aged 53 but as of today I am still here and still taking on races and challenges that many would never even contemplate healthily.


as I write I have completed 5 walking marathons in 5 days with 2 more to go to make it 7.i am doing this with colleagues from work and for these 7 events alone we will raise over £50k for Pcuk so please believe that life is not over and you and oh can also make a difference for others.


if you want to see more either look at my bio or visit my personal website www.makethemostofit.org 


never stop believing 


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 17 Jun 2018 at 23:22

Thanks kev


 


You are an inspiration, but marathon running will was not and will not be something my OH does.  He does go to the gym to.. And we have a dog which makes us go out for nice long walks. He usually works abroad but whilst having his chemo he's able to work from home., So more family time.


 

User
Posted 17 Jun 2018 at 23:54

Originally Posted by: Online Community Member
Kazzy, oh the perils of Dr Google. We can all search for worst case scenarios and scare ourselves half to death. That doesn't help at all. How long on HT? Well, I have a cousin who has been under treatment for 20 years. Nobody can answer your question, because it all depends on the individual. In my case, it worked for a few years before other treatments became necessary, but I still have 12 weekly Zoladex jabs 11 years on, because they provide some benefit; not enough on their own to keep the PSA low but useful anyway. There are lots of different scenarios for the use of HT, as I hope I have shown.

Your OH has had a very good initial response to HT. The PSA will probably continue to fall. Hold on the the facts and stay positive.

AC


Dr Google can also find LOTS of examples of guys with the awful PSA / staging who are still here 15 years later. Keep proactive, keep googling and don' t let high and mighty consultants ever palm you off if you are not happy with treatment.  If in doubt you can always float ideas on here and other similar forums.


 

User
Posted 21 Jun 2018 at 17:21

Quick update..OH has blood test on Monday saw consultant on Tuesday and the result is PSA 0.5 . Couldn't be happier. His start PSA was 26.3 this went down to 8.2 after 4 weeks of prostap. He has now completed 10 weeks Prostap and 1 docetaxel cycle.


 


Staying positive.


Regards Kazzy

User
Posted 21 Jun 2018 at 19:50
Glad alls going well,my OH Gary also had positive results .we’re 2 years after finishing chemo (21/2years from diagnosis) and PSA is still undetectable.
Best wishes for the future
Debby
User
Posted 21 Jun 2018 at 22:01

Hi Debby


 


That is good news.  Was shocked to say the least when they said OH was 0.5 didn't expect such a drop in such a short time.


 


Staying positive. OH is on the stampede trial.


Regards


Karen

User
Posted 10 Jul 2018 at 17:53
Another update.. Had blood test pre chemo tomorrow and PSA down to 0.2 . Very happy with this.

Can anyone tell me what figure it is to be undetectable and what it should be for a 53 year old. I've read many different numbers.

Thanks kazzy
User
Posted 10 Jul 2018 at 21:48
You don't really need to think about undetectable PSA since your OH still has a prostate. It is more relevant to men that have had the surgery and so should have hardly any PSA in their body.

A 53 year old should be referred to a urologist if his PSA is over 3.0 but 'normal PSA for a man in his early 50s could be anything from 0.5 - 3.0
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 10 Jul 2018 at 23:14
The "old" undetectable threshold that is still in use in many places is 0.1.. Ultrasensitive PSA testing has now reduced that to 0.001 potentially but as Lyn says your other half still has a prostate so it will never get down to 0.001.


User
Posted 12 Jul 2018 at 13:59
Hi, it's two years since I finished chemo and my PSA is still under control and I'm in a good place and still working. there are no guarantees with cancer but Prostap seems to work longer after chemo. My PSA was 68 with mets in my lymph glands and pubic bone,
I hope this gives you some hope.
Stay strong, Michael
User
Posted 12 Jul 2018 at 17:37
Thank you Michael

I'm very positive about his outcome but sometimes have a wobble when you realise it isn't going to go away and it's something that will always be on your mind.

He's coping with chemo brilliantly and apart from the hot flushes he's doing ok on the prostap.

Before diagnosis he wasn't ill, working abroad going to the gym and walking dog regularly, so was a shock when diagnosed.

His has spread to semenal vesicles and 3 tiny dots on pelvic bone.

He's able to work from home during his chemo then hoping to go back abroad in November.

Staying strong and positive
Kind regards
Kazzy
User
Posted 23 Sep 2018 at 18:02

Update on O/H he had now finished his 6 cycles of docetaxel and his PSA is 0.1. due his 3 monthly Prostap injection tomorrow. He had tolerated his chemo brilliantly worst side effects being the bone pain forf about 3  days then the fatigue, he had been lucky enough to work all the way thru his chemo (able to work from home). He had booked his flight back to Sweden for the 8th October, to go back to normal work.


Has a CT scan on the 20th October and next appointment with consultant is 6th November.


As a result of O/H diagnosis his brother got tested and was diagnosed in August, fortunately was caught in time diagnosed on the 14/8 had surgery on the 4/9 and hopefully cured. 


Also would like to praise my sin who had raised £2436 for prostate cancer UK by throwing himself out if a plane 


Finally I would just like to thank everyone and this site couldn't if got thru the last 6 months without it .


Thanks Karen

User
Posted 23 Sep 2018 at 19:11
Great update
Best wishes
Debby
User
Posted 02 Jan 2019 at 23:34

Hi everyone just a quick question. O/H finished his chemo is September, PSA in December 0.1


He had his latest Prostap injection in the 17th December, for the last couple of weeks he has had a really bad back, so much so he's on about going to doctors tomorrow. I know he's worrying that the cancer is spreading all over (I totally understand).   But could this back ache and tiredness be due to all the treatment he's had so far this year, or should I be worried.


I'm the optimist the one who usually keeps everyone's spirits up but am having a wobble 


Thanks kazzy

User
Posted 03 Jan 2019 at 00:25
With only a few hotspots on the pelvis, a recent scan and a stable PSA it is unlikely that the back pain is spinal mets suddenly appearing. Could be the ligaments & muscles softening as the HT really starts to affect his body (the HT can lead to something akin to a girl going through puberty - hips widen, muscles lose strength & tone) or he may be more restless at night or he might have a bit of an infection. Has he done any lifting / moving recently without realising that the HT will have made him less strong?

No harm in seeing the GP and getting checked for UTI.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 03 Jan 2019 at 08:45

Thank you Lynne... .only lifting/stretching he's done is putting Christmas light up outside so could be that. I've told him it's like going through the menopause like myself..I ache all over am tired, think he's still coming to terms with the fact he will never be cured.


Thank you for your quick and reassuring reply.


Katen

User
Posted 08 Feb 2019 at 18:28
I've had this a few times and put it down to the HT. I'm on Prostap too and have been for a year and 4 months. After thinking it's the cancer spreading and having my good wife try to put my mind at rest of course :-)

I've noticed that when I lower my excercise rate as you need to when having treatment (or a few lazy days) muscle wastage is so much faster now than when not on HT. With all the muscles in your back it's hard to keep them all active and he's been through a lot.

I've found falling asleep on the sofa at a funny angle, sleeping in bed funny or this week building a snowman with my son caused some real unusual back ache and weakness which can last for days.

Hope it's cleared up for him

Matt

User
Posted 08 Feb 2019 at 22:23

Hi Matt


Thank you for your reply...his backache has cleared up but he still gets the odd aches and pains and very tired, but he is working full-time and this involves a lot of traveling to Sweden so the tiredness can be caused by this aswell. Saw the consultant on Tuesday and everything still the same so she's really pleased.


Hope you are well


 


Thanjs


Karen

User
Posted 08 Feb 2019 at 23:10
He’s 6 months behind me with his chemo, I found the tiredness, while always there thanks to the HT, does get better over time after the treatment. I found chemo tough particularly for days 3-7 but otherwise ok, managed to work from home too.

It’s still early days. Sounds like he’s doing really well.

 
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