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
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
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
|
User
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
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
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
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
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
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
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
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
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
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
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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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
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
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
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
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
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
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
|
User
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
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
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
Hi Bladerunner
I'm new to the site diagnosed with PC last year , just like to wish you all best for Saturday.
Alan
User
User
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
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
Originally Posted by: Online Community Memberok 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
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
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
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
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
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
Hi Bladerunner
I'm the same with spread to left hip bone. Im 5 months now into stampede group J which includes abiterone + enzalutamide. My PSA is now down from 235 in January to .06 so somethings working.
Trouble with going stampede is you might get the control group which is just HT but then if you don't like it you can come off the trial.
There seems to be a lot of new thinking coming out of the earlier stampede trials about starting chemo earlier and RT so I'd certainly ask whats latest offerings to hit the cancer earlier.
Im still running but I'm not keeping my paces due to tummy upsets and loss of stamina.
I also go away to France for long periods but keep check on things there with blood tests and phone calls to stampede nurses.
All the very best and enjoy the trip to Canada
User
seems the result from stampede trial has not yet been adopted by NHS, so going n the trial will be my best outlook at moment
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
User
strange day yesterday 11th, developed a lump where the jab was done also a rash, spent most of the day feeling like I was covered in ants constantly itching
went to see my GP nice bloke gave me some antibiotics and allergy tablets to see if they help
also a tick box form on depression and anxiety where you add up the score at the end seems I am not depressed just very anxious, no suprise their then
going back next week as he wants to have a chat re how I feel so am going to make a list cause if I dont prob will not tell him owt
nidge
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
User
had phone call to day to attend Doncaster hospital 23rd june to find out what part of stampede trial I will be offered, it will be a big relief to get this sorted.
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
User
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
Hello Bladerunner
Best of luck with meeting in Doncastor.
Don't forget whichever group you get if it doesn't suit you can pull out.
I'm on Stampede J since a to January. I think I wanted the Rt group but got the a I and Enzo tablets but I'm happy to continue because of the close monitoring and number of blood readings they take ie everything is monitored.
My PSA is down from 235 in January to 0.07 now
All the best
Paul
User
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
User
Had second jab today
Because of reation to prostap have been given Zoladex
Will have to see what side effects come with this
Edited by member 22 Jun 2015 at 19:02
| Reason: Not specified
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
User
just back from my visit with the onco, had a BIG spanner chucked in the works, apart from going on stampede trial I have been ofeed the docetaxel treatment from the stampede trial
after discussing with family I think it will be the docetaxel and HT which wil start after we have had our holidays in august
never had to make such a tough choice, but its between what has been proven and what may be
nidge
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
User
Nidge
I did try to post yesterday but the French WiFi was giving me the run around.
It is a good you have been offered this outside of Stampede, it shows to me that the results that have just been published have got through and are being used by the more advanced thinking Oncologists.
At Leicester the amazing guest Onco did say that this was the best news in a long time for anyone with spread and possibly even for some men with locally advanced PCa.
He also said that in the year or so to come the take up may cause some admin problems with funding and balance between budgets of Urology and Oncology departments as well as pressure on the chemo suites. So it is good that you are getting started in August and have already been signed up so to speak.
Best wishes
xx
Mo
User
well changed my hormone treatment from prostap to zoladex, must say how much better I feel with zoladex, my running is easier dont feel like my lungs are going to bust, and just feel better altogether
nidge
Edited by member 28 Jun 2015 at 16:23
| Reason: Not specified
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
User
Glad the change of meds is proving beneficial. Run long and prosper nidge!!
We can't control the winds - but we can adjust our sails |