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cancer gone to bone

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User
Posted 06 May 2015 at 21:43

hi all

had a phone call from nurse to give me some info before seeing consultant this saturday 9th may, basically all she wanted to say was to remind me I have high grade cancer and it has gone to bone, that I would be put on hormone theropy and we would look at stampede trial, didnt want to say much more over phone

been trying to read between the lines come to conclusion it will be T4 cancer at best T3, as it has broken out, roll on saturday and lets get this sorted

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 07 May 2015 at 06:48
Sorry to hear about your bones BR, I am T4 and can still run. Last chemo Tuesday and my consultant said that there is a paper due to be released next week confirming what has been said above, hit it hard and fast, chemo and radiotherapy will stop/delay plus HT. I have had virtually no bad side effects. wish you well, 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 07 May 2015 at 12:08

Bladerunner

 

I was diagnosed in 2008 aged 51 with similar stats to you and I'm still here http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif. I had loads of bone mets from day 1, all over my spine, pelvis and ribs http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif. Although not a natural runner, I am very sporty and ran in the 2009 Belfast Marathon for PCUK. Check out my profile - I'm into year 8 and still feeling fine. Keeping fit and mentally alert is a real plus. I also took part in the STAMPEDE trial where I met my current brilliant oncologist who is keeping me this way http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif

Nil desperandum

Allister

User
Posted 07 May 2015 at 06:29

Hello Bladerunnner.
Just to say all the best for Saturday. I'm away for the next few days so will not be able to keep my eyes on site's posts to see how you get on.
Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 07 May 2015 at 06:43

Sorry to hear this BR. Lots of questions to ask the consultant. Please feedback on here as there are lots of men who are/have been in similar situations and who can share treatment experiences.

IMO Being proactive is essential

Bri

User
Posted 07 May 2015 at 15:11

Sorry to hear your news BR,

But as you can read above all is not lost by any means.

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 07 May 2015 at 19:18

Hi Bladerunner
I'm a T3b N0M1. Diagnosed jan 2015 with psa of 234. I was told that the PCs couldn't be removed since it's broken out of prostate and gone to hip bone.
I was started on HT quarterly injections after month on tablets and invited to join Stampede Trial which I did. I was randomised to group J (abiraterone and enzalutamide) it's been 3 months now, I've had no symptoms at all, my running has not been affected , so it's carry on as normal.
My next run is Sunday Leeds Half Marathon.
I'll let you know how I feel after that.

You sound like you're being positive about things, I'm sure this has got to be the right way
Best of luck for Saturday

Paul

User
Posted 07 May 2015 at 23:25

Hi Blade runner,

I saw your post earlier but I have only just had the chance to add my farthings worth, I wish that I had replied earlier as I am now feeling slightly inadaquate with all of the super duper runners replying. Hats off to all of you guys http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif, I have run for buses a couple of times but that is about my limit , OH I did do a pretty good sprint in my head when Trevor was diagnosed but I suppose that doesn't count. I probably did a four minute milehttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif.

Take heart from people on here that are doing well several YEARS ON , keep that in your thoughts. 

BFN

Julie X

 

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 10 May 2015 at 18:22
BR

sorry that the cancer has spread to your hip, I am a firm believer that when this happens the best chance you have is to go at it all guns blazing. A Gleason 9 is a very different picture to a Gleason 7 but your Onco will explain all this in much better detail and more accurately than I can.

Stampede is one really big trial and any of the Men on this forum have been involved at some stage in their battle with this disease.

I just wanted to say that with your physical fitnees, mental strength and all that goes with being a marathon Man you have some major assets going for you.

I hope soon that we will have another of our Newark gang get togethers soon where you can meet up with others in a similar situation. If you have not booked to go to Leicester I think there is still a late possibilty due to cancellation a lot of the people you have talked to so far on this forum will be there in June.

I wish you all the very best

xx

Mo

User
Posted 10 May 2015 at 20:13

Hi Blade Runner,

Just seen your messages and thought I would say hello. My Husband is 47 and has a stage T3 Pca, diagnosed Nov '14. I am 35 and we have a 5 year old daughter. The original scans showed it was contained in prostate, so he had the prostate removed in Jan '15- however, they then found it had spread, and a lymph node dissection chowed 1 lymph node involved, as well as bladder neck and seminal vesicles.
To cut a long story short, even though they removed the prostate, he too is now on hormone therapy. Has had one injection and has second tomorrow. May need radiotherapy, but there are two further suspicious nodes outside of pelivc area as well.

Anyway, it's just to say please carry on with hope and be encouraged by the positive stories you will read. Every day tell the cancer it will not win! Even in your situation (my husband also is gleason 9), I do believe there is much that can be done and much to hold on to. Pete had a PSA of 46 at the beginning.

We also have a family froend whose PSA was originally 200. He went straight on to hormones, and that was 2 years ago and he is still absolutely fine, working, looking and feeling healthy.

SO please take heart. It is such a support to have this forum! All the very best xx

'Sorrow looks back, worry looks around, but faith looks up'
User
Posted 06 Jun 2015 at 17:35
Hi Bladerunner,

Sorry to hear the news of the spread to the hips. Not what you wanted to hear. I hope that they can sort out a treatment plan that will make things easier for you and allows you to keep running. I know how important that can be to keep your spirits up. I know if has helped me.

Keep in touch with everyone here. I'm sure the support here will help greatly. It helped me get through most of my worse moments.

Keep in touch.

Steve

User
Posted 07 Jun 2015 at 10:28
Hi BR

Sounds like your Oncologist is comfortable with your current treatment especially if he is happy for you to go visit your grandchildren in Canada. Make sure you check out health care reciprocity and travel insurance just in case. We found it prohibitively expensive to get full travel cover but for Europe or countries with any reciprocity we took the chance.

When you go onto Stampede trials you will have the option randomly selected by a computer. You may get additional and potentially harder hitting treatment or you may just get control. That gets you more regular check ups.

The findings from early trials are suggesting that in a case like yours the gold standard treatment will be HT + chemo asap and possibly followed by RT ..check out Irun's profile as Kev seems to have many similarities to you. I would say look at siness too but his profile is still reporting an error which the IT department seem unable to fix.

Hope to see you soon

Best wishes

Xx

Mo

User
Posted 12 Jun 2015 at 14:42
Hi BR

Hope the trial selection goes well for you even the control arm gives you closer and more frequent monitoring.

As fo the lump amd rash from the zoladex implant are you sure the lump isn't just the implant it goes just into the first layer of subcutaneous tissue it is a little bit larger than a standard painkiller capsule you can sometimes feel it if you feel around the area it was implanted.

A rash is quite a common side effect but should only last for a week at most. If it is still troublesome I would ring the clinical nurse specalist in the urology department.

Best wishes for 23rd.

Xx

Mo

User
Posted 12 Jun 2015 at 16:01

BR
Oh by the way is that jab you refer to the HT prostap cos I had my second 3 monthly jab and had a nasty lump there for about 2 weeks followed by a feeling across my stomach as if a horse had kicked me, Onco said its nothing to be concerned about. I guess it's just the drug dissipating into the body.

Cheers
Paul

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User
Posted 06 May 2015 at 23:19
Hi again

The spread is not the best news for you and it will limit your options. Everything I have seen or known from this is to hit it as hard as you can with whatever is offered you are young and really fit so your body should cope well.

No easy way to say that but I am thinking of you.

Xx

Mo

User
Posted 07 May 2015 at 00:18

Hi Bladerunner,

Just wanted to say that I'm thinking of you and hope the appointment on Saturday will provide some answers for you. 

Your level of fitness will be a great help with any treatment offered.  Being a very good runner, you will be used to facing very great challenges and beating the odds. 

Never give up, we'll all here for you.

Steve 

 

 

 

Edited by member 07 May 2015 at 11:02  | Reason: Not specified

User
Posted 07 May 2015 at 06:29

Hello Bladerunnner.
Just to say all the best for Saturday. I'm away for the next few days so will not be able to keep my eyes on site's posts to see how you get on.
Best Wishes
Sandra

We can't control the winds - but we can adjust our sails
User
Posted 07 May 2015 at 06:43

Sorry to hear this BR. Lots of questions to ask the consultant. Please feedback on here as there are lots of men who are/have been in similar situations and who can share treatment experiences.

IMO Being proactive is essential

Bri

User
Posted 07 May 2015 at 06:48
Sorry to hear about your bones BR, I am T4 and can still run. Last chemo Tuesday and my consultant said that there is a paper due to be released next week confirming what has been said above, hit it hard and fast, chemo and radiotherapy will stop/delay plus HT. I have had virtually no bad side effects. wish you well, 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 07 May 2015 at 10:34

just been talking with one of support nurses, about what may/will be discussed, the hormone theropy I thought would just be tablets but it seems you can have an injection, they say stampede is a good trial to get on, but if you find you dont like it then you can opt out.

also said my age (just love being called young)and fitness level are a big plus.

so onward and upward

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 07 May 2015 at 12:08

Bladerunner

 

I was diagnosed in 2008 aged 51 with similar stats to you and I'm still here http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif. I had loads of bone mets from day 1, all over my spine, pelvis and ribs http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif. Although not a natural runner, I am very sporty and ran in the 2009 Belfast Marathon for PCUK. Check out my profile - I'm into year 8 and still feeling fine. Keeping fit and mentally alert is a real plus. I also took part in the STAMPEDE trial where I met my current brilliant oncologist who is keeping me this way http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-innocent.gif

Nil desperandum

Allister

User
Posted 07 May 2015 at 15:11

Sorry to hear your news BR,

But as you can read above all is not lost by any means.

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 07 May 2015 at 19:18

Hi Bladerunner
I'm a T3b N0M1. Diagnosed jan 2015 with psa of 234. I was told that the PCs couldn't be removed since it's broken out of prostate and gone to hip bone.
I was started on HT quarterly injections after month on tablets and invited to join Stampede Trial which I did. I was randomised to group J (abiraterone and enzalutamide) it's been 3 months now, I've had no symptoms at all, my running has not been affected , so it's carry on as normal.
My next run is Sunday Leeds Half Marathon.
I'll let you know how I feel after that.

You sound like you're being positive about things, I'm sure this has got to be the right way
Best of luck for Saturday

Paul

User
Posted 07 May 2015 at 23:25

Hi Blade runner,

I saw your post earlier but I have only just had the chance to add my farthings worth, I wish that I had replied earlier as I am now feeling slightly inadaquate with all of the super duper runners replying. Hats off to all of you guys http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif, I have run for buses a couple of times but that is about my limit , OH I did do a pretty good sprint in my head when Trevor was diagnosed but I suppose that doesn't count. I probably did a four minute milehttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif.

Take heart from people on here that are doing well several YEARS ON , keep that in your thoughts. 

BFN

Julie X

 

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 09 May 2015 at 00:10
Hi Bladerunner

I'm new to the site diagnosed with PC last year , just like to wish you all best for Saturday.

Alan

User
Posted 09 May 2015 at 13:43

Good luck Bladerunner

dl

User
Posted 09 May 2015 at 17:50

ok info from hospital visit.

the cancer has only gone on to my left hip, this may seem strange but felt great relief that it was only the one place, had visions of it being everywhere, got prescription for hormone tablets casodex ( bicalutamide), these first then injections every 3months, next step is to see an oncologist at doncaster, then to discuss if they will acept me on to stampeded trials, told that my gleeson score was 9, and not what I thought of 7.

told him I had just run london marathon wish I had my camera to hand the look of shock on his face was funny. said to keep doing my running

 

Edited by member 10 May 2015 at 08:25  | Reason: Not specified

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 10 May 2015 at 17:51

Hi Bladerunner
Well done on the London Marathon, I know you're in a different league to me but having done the race 2 yrs ago I know how hard it is.

You're on same medication as I with similar PCa spread to hip bone.

I wondered how if at all your running has been affected by the HT. I started on bicalutamide then onto quarterly Prostap injections plus abi & enzo from Stampede J.

I've just done Leeds half marathon and i struggled.

All the very best for your next challenges.

Paul

User
Posted 10 May 2015 at 18:00

Originally Posted by: Online Community Member

ok info from hospital visit.

the cancer has only gone on to my left hip, this may seem strange but felt great relief that it was only the one place, had visions of it being everywhere, got prescription for hormone tablets casodex ( bicalutamide), these first then injections every 3months, next step is to see an oncologist at doncaster, then to discuss if they will acept me on to stampeded trials, told that my gleeson score was 9, and not what I thought of 7.

told him I had just run london marathon wish I had my camera to hand the look of shock on his face was funny. said to keep doing my running

 

 

Oh I bet.  Can't imagine he gets many patients with bone mets in the hip doing marathons.#

 

Well done all of you runners who are not letting cancer get in the way of living

We can't control the winds - but we can adjust our sails
User
Posted 10 May 2015 at 18:22
BR

sorry that the cancer has spread to your hip, I am a firm believer that when this happens the best chance you have is to go at it all guns blazing. A Gleason 9 is a very different picture to a Gleason 7 but your Onco will explain all this in much better detail and more accurately than I can.

Stampede is one really big trial and any of the Men on this forum have been involved at some stage in their battle with this disease.

I just wanted to say that with your physical fitnees, mental strength and all that goes with being a marathon Man you have some major assets going for you.

I hope soon that we will have another of our Newark gang get togethers soon where you can meet up with others in a similar situation. If you have not booked to go to Leicester I think there is still a late possibilty due to cancellation a lot of the people you have talked to so far on this forum will be there in June.

I wish you all the very best

xx

Mo

User
Posted 10 May 2015 at 20:13

Hi Blade Runner,

Just seen your messages and thought I would say hello. My Husband is 47 and has a stage T3 Pca, diagnosed Nov '14. I am 35 and we have a 5 year old daughter. The original scans showed it was contained in prostate, so he had the prostate removed in Jan '15- however, they then found it had spread, and a lymph node dissection chowed 1 lymph node involved, as well as bladder neck and seminal vesicles.
To cut a long story short, even though they removed the prostate, he too is now on hormone therapy. Has had one injection and has second tomorrow. May need radiotherapy, but there are two further suspicious nodes outside of pelivc area as well.

Anyway, it's just to say please carry on with hope and be encouraged by the positive stories you will read. Every day tell the cancer it will not win! Even in your situation (my husband also is gleason 9), I do believe there is much that can be done and much to hold on to. Pete had a PSA of 46 at the beginning.

We also have a family froend whose PSA was originally 200. He went straight on to hormones, and that was 2 years ago and he is still absolutely fine, working, looking and feeling healthy.

SO please take heart. It is such a support to have this forum! All the very best xx

'Sorrow looks back, worry looks around, but faith looks up'
User
Posted 06 Jun 2015 at 14:10

had my first onco visit today 6/6/15

told cancer is in both hips smaller in the right, its the density not size which is important, puting me forward for stampede trials.

says will be ok to go on holiday to see grandkids in canada

some of what I was told had worked out already

no plans as yet re radio therapy or chemo

told to keep on running

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 06 Jun 2015 at 17:35
Hi Bladerunner,

Sorry to hear the news of the spread to the hips. Not what you wanted to hear. I hope that they can sort out a treatment plan that will make things easier for you and allows you to keep running. I know how important that can be to keep your spirits up. I know if has helped me.

Keep in touch with everyone here. I'm sure the support here will help greatly. It helped me get through most of my worse moments.

Keep in touch.

Steve

 
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