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Just diagnosed with advanced PC

User
Posted 30 May 2015 at 12:01

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 This made him feel exhausted and miserable, and it was withdrawn in May.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 16:52

Originally Posted by: Online Community Member

Hi

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.

 

 

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 19:16

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 12:58

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 14:14

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 04:40  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 23 Jul 2015 at 21:31
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 08:29

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 09:41

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.

User
Posted 30 Jul 2015 at 10:07
So sorry to hear of the missed opportunities for you Bennyboy, , you don't say where you are in terms of prognosis as all of us with advanced PC are in the same boat. You are right about how you feel re living with incurable cancer, I am only 9 months with the knowledge, I hope I have 5 more years + with that knowledge painful that it is everyday for both me and those around me. Like you, there is no point getting hung up on sex v life there as there is no contest.

If I had had the option if surgery to remove it I would have done it as a period of time with incontinance v living again, no contest.

I hope anyone reading this can rationally weigh up what is more important in their life whilst they have a choice.

Alfie, I am sorry chemo has given you so many aggressive side effects, hopefully your onco will reduce the dose for the second one as I too had low blood scores and ended up in hospital although that was after injpections to boost my red blood cell production, we just have to trust in their best guess as that is all they can ever do. Hope you get strong again soon, rooting for you, 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 15:23

Hello Benny boy and welcome.

I'm sorry that not only do you qualify for our community but that you should have had the delays and incorrect diagnoses/treatments that you did.

We went down the permanent seed Bracytherapy route and for us it was the right choice, in fact it was our choice.

We may well have problems in the future, but then we may well have had problems with what ever treatment path we took.

It's all a bit of a lottery of you ask me.

Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 30 Jul 2015 at 15:24

Sorry the treatment is knocking you for six alfie.
I hope the bloods come back with a good enough result to allow you to go home.

All the best
Sandra

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