Just diagnosed with advanced PC

User

Posted 12 Mar 2015 at 22:04

Hi, i have recently (Feb) been diagnosed with T3 N1 M1 Gleeson score 10 and PSA 12.5 i am 58 and reasonably fit if a little overweight!!!

It all started in early November having problems going to the loo (being embarrassed at the urinals) i finally decided to go see my doctor mid January when just as an afterthought he asked if i had ever had a PSA blood test (i answered no-never heard of it) i wish i had. Anyway i duly had it and the DRE then the same DRE with the urology consultant who told me i had a significant prostate cancer.Telling my wife was hard (as i had gone alone thinking it was just going to be a chat) but she was brilliant and supportive, i have since had the MRI, Biopsy, bone scan and xray as they found areas at the top of my spine and rib cage that they thought might be cancer (so in their considered opinion it is) I was started on on tablets for 28 days (Bicalutamide (Casodex) and had my first LHRH analogue injection on 13th February, my next is tomorrow. Apart from hot flushes etc i don't feel too bad on the HRT. I asked about going on the Stampede trials but my local hospital is full and i declined traveling to the next closest (1 hour away- and my wife doesn't drive) so the oncology passed me back to urology for a PSA test in three months. I know i can ring the Nurses number with questions and i am sure in time i will, but first i thought i would try those that have and are experiencing it first hand (god bless you all)

Are the benefits of taking part in the trials sufficient to warrant me traveling the 1 hr , when the oncologist said i could end up on the same treatment i am already on?

I want to plan ahead and i read so many different stories ( i know not everyone reacts the same) but i need to know something, like how long can i expect reasonable health?

Thanks for listening i am sure i will be back once i have my positive head on :)

AlfieJ

"Viva La Vida" Long Live Life (Frida Kahlo)

User

Posted 12 Mar 2015 at 23:14

Hi Alfie,

Well snap I don't drive either , well maybe I drive Trevor up the wall but that's another story. (I am his long suffering better half he doesn't post him self) Yes it does take awhile to get a positive head on especially after it has been knocked sideways after a cancer diagnosis.

I know everything seems bewildering and scary at the moment but there are many on here ourselves included that might just give you a lift and some hope, if you click on our individual names or avatars you will see different Bios. Allister (Allathays) has just celebrated 7 years since diagnosis , Devonmaid (Alison ) her husband John is 4 years since diagnosis with a high gleason and spread and last but not least Trevor had a psa of 13000 with ext mets and we WILL be celebrating 2 years in May since dx.

If you haven't already done so then down load the Tool kit on the top of the website it is very informative . Re the trials we were precluded due to Trevor's heart problems but I am sure that everyone here would advise that they are a good thing , you will get extra monitoring plus access to new drugs and that can only be a good thing.

My advice would be to go for the trials , we are a friendly bunch and you will get so much advice here on every level .

Stay positive, stay posting

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 13 Mar 2015 at 08:13

Hi Alfie, sorry you are here, I was diagnosed last October, similar to you, age 49 (then). I was asked if I wanted to go on the trial but then as you have been told you may not get the trial drug. My oncologist then rethought and put me on what you have plus chemo and then radiotherapy. I would ask the consultant if you have been considered for this, get the reasons and write it all down. So much is said in meetings if you don't prep your questions and make notes you may forget. This forum has been excellent support so ask anything or just rant about stuff, there are many ears who will listen to even your darkest thoughts. Take care and keep fit. 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 13 Mar 2015 at 09:50

Hi Alfie

Sorry that you find yourself here but you will receive a lot of support. I was asked to take part in a trial alongside the treatment I was having but it was a 'lucky dip' as to what one it would be so I declined, I wasn't in good health at the time and didn't feel I could add to the treatment I was having. My hospital was fine with this and didn't try to push me.My wife comes with me when I see the oncologist (especially when I was first diagnosed) as she may pick up on something I might miss. I've had radiotherapy and continuing with Prostap injections every 12 weeks. I don't drive either but the hospital I went to in North London provided transport every day, perhaps that's a question you could ask. Click on my name to look at my profile - hope this will encourage you in what can be done for you.

Arthur

User

Posted 13 Mar 2015 at 10:09

Originally Posted by: Online Community Member

Hi, i have recently (Feb) been diagnosed with T3 N1 M1 Gleeson score 10 and PSA 12.5 i am 58 and reasonably fit if a little overweight!!!

I asked about going on the Stampede trials but my local hospital is full and i declined traveling to the next closest (1 hour away- and my wife doesn't drive) so the oncology passed me back to urology for a PSA test in three months. I know i can ring the Nurses number with questions and i am sure in time i will, but first i thought i would try those that have and are experiencing it first hand (god bless you all)

Are the benefits of taking part in the trials sufficient to warrant me traveling the 1 hr , when the oncologist said i could end up on the same treatment i am already on?

I want to plan ahead and i read so many different stories ( i know not everyone reacts the same) but i need to know something, like how long can i expect reasonable health?

Thanks for listening i am sure i will be back once i have my positive head on :)

[/quote

Hi Alfie,

I have no experience of Stampede trials and advanced PCa, fortunately, but thought i would comment on some points in your OP.

If you are a little overweight now, then do what you can now to reduce that. Any treatment options later are likely to make you put on weight, and if you are already overweight this will not help you.

Is it possible that you are not the first person to have been refused the trials at your local hospital? Have you considered asking them if there are any other men who have also been refused local access to Stampede but who travel to another hospital, with a view to seeing if you can share transport?

If it were me in your position, I would be aiming to speak and meet with as many experts as possible at this stage to determine what treatment options are available and what benefits might be achieved, so in short I would still look to see the oncologist at the other hospital as until they have a look at your symptoms and results who knows what might be offered or achieved potentially.

All anyone can say to answer your last question is a "guesstimation" based on everyone else in a similar position results, and you might be at the top end of that or not.

atb

dave

Edited by member 13 Mar 2015 at 14:21 | Reason: Not specified

User

Posted 13 Mar 2015 at 12:26

Dear Alfie

Sorry that you have had to join us, but welcome nevertheless.

My OH did enrol on the STAMPEDE trial (we were in 2 minds about it) and he got the Abiraterone arm. So the standard treatment plus the additional drug. Of course that brought some additional side effects such as high bp, that needed extra tablets to control and additional blood tests for Potassium monitoring and correction, which was even more tablets!

However the additional appointments that he had when on the trial were reassuring and meant we could build up better relationships with the Dr and nurses. Also any other worries that we had were checked out promptly (PCa related or not) so that gave us 'better service' in a way.

You could always see what arm of the trial that you are given and then make a decision whether to continue with it? You can withdraw at any time.

It is s difficult decision to have to make after the 'sledgehammer' that you have just have been hit with. It would be so much easier if the Drs just told you what to do and did not give any options....

We have all been where you are...take a little time to think it over and speak to a trial nurse to get more info...no harm in that.

All the best.

Alison

User

Posted 13 Mar 2015 at 16:42

Hi Alfie,

It may be helpful to ask if there are other trials in your locality as well as Stampede. Take a look at Cancer Research UK website. They have a section on Trials which probably covers everything available at present. Helps to have an oncologist who is really up to date with what's available and who is willing to fight your corner. Generally, being on a Trial means you have better monitoring and you are on the radar if something more suitable comes along. If diagnosed with advanced cancer there may be benefits you are eligible for which could fund traveling for a trial, there was a recent thread on the site about benefits and PCa. Worth checking out ! I wish you all the best,

Fiona.

User

Posted 13 Mar 2015 at 16:43

Hello Alfie and welcome
There is a lot of support on here.
Ask anything you like, however personal, somebody will know what you mean
All the best
Sandra

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

User

Posted 13 Mar 2015 at 17:07

Hi Alfie

Welcome to the forum, as the others have said we are a friendly bunch here and try not to dazzle with science (most of us can't anyway) but offer our opinions and experience, of course we are not medics and can only tell you how it is for us.

Alfie, my hubby was 61 when his scores on the doors were similar to yours, Gleason 10 and PSA 25, that was mo rthan four years ago and he is currently on a drug called Stillbestrill though we are expecting a change soon, he hasn't yet had chemo or any of the newer drugs.

We decided to join Stampede and we got the control arm, so had no additional treatment but did enjoy the additional attention and the opportunity to get to know our medics a bit better. Each time John's Cancer has started to grow again we have been given a different drug and that has confused the Cancer and kept it at bay. We are so lucky, I don't know why it should be that way but we are happy with the way things have gone for us.

I think you go to see the oncology team once every three weeks, then six weeks on stampede, eventually going to three monthly. I have been glad we did it because we are under an oncologist, a Cancer specialist rather than a urologist, but not every man prefers it that way.

Please feel free to ask questions and hopefully we will be able t support you along this journey.

With kindest regards

Allison

User

Posted 13 Mar 2015 at 23:13

Thank you all for your comments and support, i have talked it over with my wife and decided to see if i can get on the Stampede trial at the other hospital, will keep you posted
Adios
Alfie

AlfieJ

"Viva La Vida" Long Live Life (Frida Kahlo)

User

Posted 20 Mar 2015 at 14:25

This is the first time that I have joined in with a conversation on this site but felt that I wanted to share my husband's story and experiences so far.

He was diagnosed with advanced prostate cancer at 49 years old with no symptons at all until later stages when he had back ache and was advised by the doctor that he had a slipped disc. Being very active he just put it down to sporting injuries but when it got really bad decided to pay for a private scan to check it all out. This is when it showed up. Nov 2012.

PSA was 4300 when diagnosed and had spread to the bone in a number of places. He was rushed into hospital and was not even able to turn over as they thought he may have spinal constriction. After a course of radiotherapy he was put on to hormone treatment, an injection once every 3 months.

That lasted for about 16 months which was great. He was on Stampede as the control arm, we had extra forms to fill in but also the added benefit of more regular visits.

He has now just finished 6 months of chemotherapy and as the PSA is rising again (over 300) he is now been put on to Enzalutamide. The consultant made us both feel a bit down when she said that this lasts around 6 months. We thought it was a lot longer?

I wondered if anyone else out there is at this stage or has some positive experiences to share with me about Enzalutamide? We have also been told that he will be put on Cabazitaxel (second line chemo) later and also has the option of Radium 223? So lots of future options.

Would really appreciate some positive stories/experiences. I know everyone is different, but good to know how other people are doing in a similar situation?

Many thanks,

Sharon.

User

Posted 20 Mar 2015 at 17:59

Originally Posted by: Online Community Member

Thank you all for your comments and support, i have talked it over with my wife and decided to see if i can get on the Stampede trial at the other hospital, will keep you posted
Adios
Alfie

Excellent move IMHO. Good luck with it.

dave

User

Posted 20 Mar 2015 at 18:03

My OH is on Stampede trial and has been since diagnosis in September 2012.

HT worked for about 14 months, then PSA started to rise and put onto chemo. Lasted 5 treatments as developed peripheral nerve damage. Been on Enzalutamide since July 2014 and, touch wood, PSA remaining low (see profile).

I would echo other comments in that Stampede is well worth it as you get the benefit of seeing an Oncologist.

Cheers

Glen

User

Posted 29 Apr 2015 at 15:02

Hi Alfie

I am glad that you have decided to go with the Stampede trial... we feel it was the best thing for my OH and more than likely one of the main reasons why he is still here today.

My OH was diagnosed on Xmas Eve 2011 after having no symptoms and going to his GP for a "check up". (I had been nagging him for a couple of years as both his father and grandfather had passed away from PC. He was 52 and I felt it was necessary for him to go for check ups to ensure all was ok...!).

His PSA was 229 and his Gleason was 9 but fortunately no mestastes and the PC was locally advanced, just outside the prostate and in a couple of lymph nodes.

He was put on to HT straight away, pills to start with and then 3 monthly injections ever since.

He was offered the Stampede trial and got the chemotherapy arm so his treatment entailed:

6 chemotherapy sessions (docetaxal) over a period of 18 weeks

3 weeks break

6 weeks of daily radiotherapy.

He had some side effects the main two being neuothrapy in both his hands and feet (still suffers slightly but is much better than at the beginning); and extreme fatigue. The tiredness has never really gone away but he has learnt to live with it (most of it is to do with the HT).

His PSA is down to 2.2 and he has been taken off the HT to see how he copes.

We are 3 years + down the line and he is relatively well, being able to play football with our 9 yr old son and manages to work 30 hours a week from home. He does get extremely tired and has to have a nap in the day but the main thing is he is still here and hopefully will be for many years to come.

Good luck with the trial.. and stay positive.

Cheryl

User

Posted 27 May 2015 at 20:17

Hi,

I have been accepted on the Stampede Trial and drawn the radiotherapy arm,i have a dose one day a week for 6 weeks and had my first yesterday.

The side effects are not too bad just hot flushes, feeling tired, lack of strength, slightly increased urgency etc.

I have learnt since first posting that i have further involvement in the lymph nodes in the abdomen and chest, but on the plus side my PSA went down to 4.2 in March

But i have been having persistent neck pain for the last 3 weeks coupled with a rise to 5.3 (advised today) i have to go see the consultant as i have cervical spine involvement and they need to check it.I am feeling somewhat down at the moment if it were not for my wife and family i would be struggling. Its just worrying as there never seems to be any good news (not for long anyway!)

Still taking the caravan to the coast for the weekend tomorrow for some R & R with be beautiful caring wife

Take Care

Alfie

AlfieJ

"Viva La Vida" Long Live Life (Frida Kahlo)

User

Posted 27 May 2015 at 20:33

Hi Alfie

I can't really offer any advise. I do know there are many men on here with similar or worse dx than yours who are living life to the full and have done so for many years.

I hope your break away will cheer you up and you have a lovely time with your wife.

I wish you all the best

Bri

User

Posted 27 May 2015 at 21:34

Hi Alfie,

It's a tough old ride this PC I have often as have others described it as a roller coaster, it is good that you have had minimal side affects I can't advise about your psa rise as we are not on that treatment but I do recall others having a rise in the early days of RT . Hopefully someone will come along to put your mind at rest.

Have a lovely weekend in your caravan with your lovely wife.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON

User

Posted 28 May 2015 at 01:32

Hi Alfie,
when you go to see the consultant, ask whether they are testing your Testosterone levels when they do the blood tests. Sometimes the HT makes your PSA rise a bit at first which is why you had the Casodex for a couple of weeks before. But if you were my brother or OH i would want them to check the testosterone regularly to make sure the hormone treatment is working correctly

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

User

Posted 28 May 2015 at 14:27

Hi Alfie,

A lot of recent publicity over research showing HT and chemo may give significant benefits if started early in diagnosis if the man is up to early chemo. One of these was the CHARRTED Study. Worth mentioning to your onco. My partner was G10, bone, lymph and soft tissue involved at first diagnosis. So wish we had gone for more aggressive treatment, he had HT and RT to prostate but the tumour became castrate resistant and spread within months. Everyone with PCA is different and their disease responds differently of course but it's worth keeping track on any results of research We have had a few recent threads about assertive treatment for advanced disease. may be worth a look. Best of luck,

Fiona.

User

Posted 29 May 2015 at 17:43

Fiona is right, early chemo is an option you shold ask about. Since the US trial, there has been a very recent report on an earlier arm of Stampede, which is mainly UK-based and a larger sample. This suggests that for newly diagnosed men with advanced, metastatic Pca, it can bring an extra 22 months (mean figure) of survival. When you're looking at just a few precious years, this is a huge benefit, so do ask about it. It wouldn't entail joining Stampede, you'd just be having chemo (6 x 3-week cycles of docetaxel). It is very new research, and the full report is in the current edition of the journal "Cell" if your onco wants details.

Marje

User

Posted 30 May 2015 at 13:01

Hello, Alfie,

My husband, Pete, was diagnosed with advanced prostate cancer in July 2013. He had all the usual tests, and was put on 3-monthly Prostap injections. He was placed on the Stampede trial at the same time, and has greatly benefitted from the consistent attention he has received from the hospital.

His PSA continued to rise, and in February he was asked to take Casodex. This made him feel exhausted and miserable, and it was withdrawn in May. In June 2014, he was started on Aberatirone, and since then has felt reasonably well. His PSA initially went down to 7, but in the last few months, it has continued to rise, slowly but surely. His specialist nurse has told him not to worry about, "its only a small aberation!" but obviously we do. His major side effect is tiredness and low mood, but these don't last long.

We've decided to get our consultant and GP to refer Pete to Professor Johanne de Bono, who has recently been a leading member of the research into diagnosing what type of prostate cancer you have by doing genetic testing. As we look at it, there is nothing to lose, really, and maybe a lot to be gained.

I would always go for a trial, if offered, even if you don't get the arm you want. You still get the care and support, and information, if you ask for it

You have to be assertive with the doctors, and push for answers about alternative treatments etc.. If you don't push you won't get ! Use the internet as uch as you can cope with it, and don't give up.

Best of Luck

P&J

User

Posted 30 May 2015 at 17:52

Originally Posted by: Online Community Member

This is the first time that I have joined in with a conversation on this site but felt that I wanted to share my husband's story and experiences so far.

That lasted for about 16 months which was great. He was on Stampede as the control arm, we had extra forms to fill in but also the added benefit of more regular visits.

Would really appreciate some positive stories/experiences. I know everyone is different, but good to know how other people are doing in a similar situation?

Many thanks,

Sharon.

I am bumping this for Sharon.

Actually Sharon it is probably best if you re-post your questions as a new thread.

As you can see, replies to your post have gone astray.

It isn't that we ignored you but people tend to follow the original post.

If you post your questions in your own right I guarantee somebody will reply to you with info you need. (I can't help unfortunately)

A belated welcome by the way and sorry that you find yourself here. But, we really are a nice, caring bunch so please give us another chance to answer you.

All the best

Sandra

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

User

Posted 02 Jun 2015 at 20:16

Hi,

Thanks again for all the advice and encouragement, the weekend away was great even the weather did us proud :)

Today back to reality, i had my second dose of radiotherapy (Gamma Rays!!) but whilst there i was seen out of the blue by another oncology doctor who arranged for me to have a CT scan to target my neck pain (caused by metastasis) after today's appointment.

Now i know how the "man in the iron mask" felt!! anyway they are going to zap it to relieve the neck pain in the next few days or so.

And then to my main point which was mentioned earlier by "Piglet" he said about the results of the Stampede Trial with a chemotherapy drug called Docetaxel which i am going to start a couple of weeks after the radiotherapy ends.

So after all this talk has anyone had this particular treatment, if so what was your experience like?

Many Thanks

Alfie

AlfieJ

"Viva La Vida" Long Live Life (Frida Kahlo)

User

Posted 23 Jul 2015 at 13:58

Hi all,

Latest update in my "circle of life" i have finished RT on the Stampede trial still got all the follow ups to go through. PSA readings seem to be going the wrong way (original PSA 12.4 went down to 4 now up to 18)

so just as well i started Chemo (Docetaxel) on the 21/7 one down 5 to go, some side effects already nothing to bad though.

John

VIVA LA VIDA

POST TENEBRAS LUX

AlfieJ

"Viva La Vida" Long Live Life (Frida Kahlo)

User

Posted 23 Jul 2015 at 15:14

Good to hear from you with an update alfie.

Sorry have no experience of chemo etc but I'm sure somebody will give an insight on the chemo.

Edited by member 24 Jul 2015 at 05:40 | Reason: Not specified

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

User

Posted 23 Jul 2015 at 22:31

Hi Alfie

I had 6 x 3 weekly chemo, I am Gleson 9'T4 M1N1a, side effects were, some hair loss ( mainly legs and chest!), finger and toe nails strange/black and on occasions painful to type, nosebleeds in the night, loss of taste, felt sick for a few days after each dose ( but never was), tired ( nay have been hormone injections), sore throat ( for a few days after each dose) however all just annoying, still ran a lot and made myself get out of bed early every day to enjoy life. Ran 2 marathons whilst on chemo (slowly) but apart from week 1 had few disabilitating physical issues.

I know it sounds cheesy but if you believe you can get through it you probably will!

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 30 Jul 2015 at 09:29

Hi, Thanks for your experience Kev, i have never been a super fit person like yourself but good on you it must have taken guts. I am trying this from day two in hospital with low neutrophil count and a temperature whilst feeling unwell. i did the right thing by following advice of the Macmillian nurses and after lots of saline and antibiotic drips i am just waiting for bloods to be done again and i might go home tonight!!!

Just in case any one else is about to start this i have had all side effects in differing degrees except hair loss at present, which is a bonus i am nearly bald anyway.

Cheers for now

AlfieJ

"Viva La Vida" Long Live Life (Frida Kahlo)

User

Posted 30 Jul 2015 at 10:41

Hello, I am now dying of prostate cancer and I should not be. I and the GP did all the right things, but I was unlucky enough to be referred to two urologists who got it wrong. My first advice is always demand to see an oncologist. They generally have a different approach. My next advice is be very careful of Active Surveillance. Sometimes it is not very active and can be known as intentional neglect - although one hopes that things have improved since I first saw the urologists. Also beware of advice that the tumour will be slow growing. Too many consultants still get that wrong.

My first consultant missed the tumour and the second one, two years later, was an Active Surveillance man. He believed that too often prostate cancer is over-treated. I knew that I was going to have surgery as soon as cancer was found and I kept telling my consultant. He kept saying that it was unnecessary. Well, by the time I demanded it, about six months later, it was all too late and I have been living with the result of that foul-up ever since. I swapped doctors and hospitals at that point and the new one has been great, but he has now almost run out of treatments to extend my life.

So, I am old-fashioned; there is still only one proven cure for prostate cancer. Get it out before it spreads. (I know Brachytherapy can have good results, but you get no second chance if it goes wrong.) If you are in your early sixties it might well be aggressive and provided that you are reasonably fit, you will recover well from surgery and get the incontinence sorted pretty quickly. I did both of these things, but, of course, I continued to die.

Finally, as I have discovered, living with cancer for five years is nowhere near the same as living without it for five years. My friend had a more understanding consultant. My friend went for surgery and he is now in his seventies, enjoying life and much fitter than me. He has also been signed off from regular cancer checks. You must make your own choice obviously, but do not be put off the surgery path if that is your choice. I have not mentioned erectile problems, but my wife and I made the decision that my long-term health outweighed sex problems. Just a shame that it was all too late due to very poor advice from a urologist!

Sorry if this a little pessimistic, but take control and sort it quickly in the way that is best for you.

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