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I am a reluctant newby here

User
Posted 22 Mar 2015 at 11:48

Irun, if you work for the company I am thinking of, you certainly are very fortunate. A year off for your colleague!!! That would have been wonderful for my OH but hell for me.

Steve, bad news but I don't want to respond on Irun's thread. Can you move the bulk to yours?

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

User
Posted 22 Sep 2015 at 20:02
So following my last year of hell I had the results from my full body MRI to see what chemo, RT, zoladex, biclutamide and dietary changes had achieved.

Happy with result as Onco said no cancer traceable in my body which is the best possible outcome. My PSA was 0.4 5 weeks ago and another test due in a couple of weeks.

Sadly I don't think the results change anything long term but I guess it is great to have everything as small as possible for when things start to move. Apparently I remain T4M1N1a despite the news today.

A far better position than I thought in the very dark months at the end of last year.

Kev

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 22 Sep 2015 at 20:28

Kev
No cancer traceable must be the best outcome possible. I'd be happy with that.
Have faith , you're strong and doing the right things, that's all you can do.

I'm following behind you by 3 months and hope I'm same as you with no cancer traceable.

Good luck with your 2nd year and keep running and posting


Paul

User
Posted 22 Sep 2015 at 20:31
BOOM what great news Kev so happy for you

Now what about that drink 😜

Don't deny the diagnosis; try to defy the verdict
User
Posted 22 Sep 2015 at 20:37

Lots of news today and Kev yours is as good as it can be. Hope you celebrate the news, long slog worth it.

User
Posted 22 Sep 2015 at 20:53

Very good news Kevin,

Really pleased for you all.

How is the training going?

Looking forward to raising a beer with you at the next bash.

dave

Do all you can to help yourself, then make the best of your time. :-)
User
Posted 22 Sep 2015 at 20:55
Hi kev

Brilliant results, very pleased for you. Keep running and enjoying life.

Lesley

User
Posted 22 Sep 2015 at 20:58
Kev

fantastic ...amazing I think I need to decide which of the incredibles you need to be. I guess no-one can prove better that hitting this cancer with everything you can as quickly as you can really does work for some Men.

As for your staging I dont think they can change that but no trace of cancer sounds like you are in the best place possible.

Love to you and yours

xxx

Mo

User
Posted 22 Sep 2015 at 21:22

Hi,

That's really great news, Kev.

Keep fighting.

Steve

User
Posted 22 Sep 2015 at 22:03

I second that BOOM from Si way to go Kevla , I certainly know how hard you battled last year but look at those results well done you.  No it doesn't change your prognosis but TODAY IS A GOOD DAY.  Sending you much love .

BFN

Julie X

 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 22 Sep 2015 at 22:05

Just wanted to add for those of us in the mets club we are out in force today , we are popping up all over the place.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 22 Sep 2015 at 22:14

Originally Posted by: Online Community Member

Just wanted to add for those of us in the mets club we are out in force today , we are popping up all over the place.

BFN

Julie X

And long may that continue !!!

 

Well done Kev. Very very pleased for you

We can't control the winds - but we can adjust our sails
User
Posted 22 Sep 2015 at 22:22
Brilliant news Kevin,

Keep on running....

Arthur

User
Posted 22 Sep 2015 at 22:24
Great to hear that as of now there is "no traceable cancer". That sounds like good news to me.

No doubt you will keep up with your running - I am sure this has helped you with the outcome of your treatment.

Wishing you all the best and hoping the good results continue.

Kind regards.

User
Posted 23 Sep 2015 at 01:23
Well done you great news.

Carol

User
Posted 23 Sep 2015 at 09:29

Brilliant news Kev...you've been through a lot but you have achieved the best possible outcome. Sounds like you have a great medical team

Bri

User
Posted 23 Sep 2015 at 23:12

It makes a change to see some good news Kevin, well done mate.


Chris.

User
Posted 26 Sep 2015 at 21:23

excellent news ....

User
Posted 18 Jan 2019 at 22:34

Hi all.

There has been so much bad news on this site recently and far too many men being diagnosed with advanced prostate cancer that i thought i would  resurrect my first thread and update where i am to hopefully give a good story to balance some of the not so to encourage others not to give up if they have any control on their situation. i know i am luckier than many.

in a nutshell T4 n1 m1 a, psa 342 on diagnosis G9. early chemo and radiotherapy despite spread to lymphs in pelvis, aorta and throat, no bone mets.

reading my initial posts brings back memories of pure fear and sadness but...............

i have and continue to run some of the toughest ultra marathons in the world raising funds for prostate cancer uk all with advanced prostate cancer. in 6 weeks i set off for the arctic to race 380 miles non stop pulling a sledge solo, 2 weeks later i will be back in the Sahara racing 150 miles there.

i was put on abiraterone as my psa was rising again after chemo/rt/biclutamide less than a year after initial treatment. i was told that abiraterone may or may not work however this week , 3 years after starting abiraterone, my psa was its lowest ever 0.05, i have had minimal side effects from this or any of my treatments to date.

yes this is a rubbish disease, yes it messes with our bodies, heads, hearts, family and friends but if you are lucky enough to be able do things please do them and plan to do them. i could have easily given up 4 years ago, i know at times i wanted to but i look back now and realise how much of life i would have missed out on if i had given up. we can control more than we think most of the time.

i know the ride for me will end one day all too soon but i will have no regrets when it does by loving the life i have whilst i have it.

if i could have given one piece of advice to me 4 years ago in hindsight early on it would have been plan something good for tomorrow every day no matter what the day is going to be so that you never wake uo with the thought "what shall i do today" as thats when you leave space for the dark and sad thoughts and those do no good for anyone.

i hope you are able to enjoy something this weekend, www.makethemostofit.org never give up.

kev

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 19 Jan 2019 at 07:37
Thankyou Irun ,my husband Gary had a very similar diagnosis PSA 23 G9 N1M1a just over 3 yrs ago and has the same mind set as you ,unfortunately due to needing 2 knee replacements can’t quite do the running bit !!! . His PSA has remained as undetectable for 21\2 years and he continues to work , sometimes it’s good to be reminded that life is such a precious thing and make the most of every day .

You are a great inspiration and I wish you well in your next adventure.

Best wishes

Debby

User
Posted 19 Jan 2019 at 11:05

Thank you Merivale and Irun! Your posts are really inspiring.

My husband had his results on Thursday 17/1/18 - PSA 90.5, Gleason 9, spread to bones -pelvis and clavicle, spread to lymph nodes. Not what we wanted to hear! Obviously we are still getting over the shock and having some very dark times but we are also managing to have moments of 'normality'. We have wonderful family and friends and we are all in this together. 

I have read some of your posts/profiles to my husband and we have looked at your website Irun. He is starting to get the message that life can go on, so thank you!

He is 58, a retired PE teacher and has always kept himself fit. He played football and he still coaches volleyball. He has always been a runner and he is now inspired to carry this on and can see the great benefit of it both physically and mentally.

The hospital phoned on Friday (the day after his results) and he is seeing an Oncologist at 9am on Monday morning. They certainly dont waste any time! He has been on hormone tablets since 17th December when he first saw the urologist. On Thursday they gave him his first hormone injection. I'm not sure if anybody can give us some idea about what may happen next. Is he likely to be given radiotherapy/chemotherapy anytime soon or just left on hormone therapy? Would you say that he is classed as advanced and t3 or t4? We couldnt take it all in the other day as much as we tried.

User
Posted 19 Jan 2019 at 12:17

Great post Kev, as always. Very uplifting despite the hell that is PC. I hope your Arctic trek goes well.

Ian

Ido4

User
Posted 19 Jan 2019 at 14:51
Hi Deblc

If you post your husbands details and questions on your own post you will get a lot of information and help from other members.it may get lost on someone else’s post .its usually pretty quiet at the weekend but others will get back to you .

Sorry you find yourself and hubby in this position but as you can see from iruns post and mine there is hope that a relatively normal life can continue .

Best wishes

Debby

User
Posted 19 Jan 2019 at 15:55

Thank you Debby, will do.

User
Posted 19 Jan 2019 at 15:58

Hi Kev, 

Great idea to post your original thread.  You have done so much to inspire others, including me ar

Thanks  

Take care 

Steve 

User
Posted 20 Jan 2019 at 12:06
As you know Kev, I follow you closely through your FB posts on your running and will say here what I say to you there.

Hackneyed word these days as it is used for silly little things sometimes but Inspiration is what you are to me and to many others.

Keep up the good work young man!!!!

We can't control the winds - but we can adjust our sails
User
Posted 16 Apr 2019 at 07:57

So here I am again hoping to give hope for some having read such sad news on the site this morning so my apologies if I unintentionally offend anyone.

Last night I returned from having completed the Marathon Des Sables 250k foot race across the Sahara for the 4th time in 4 years all since I was diagnosed with T4 prostate cancer. I realise from my years reading most posts on this site that I am lucky for so many reasons but also want others on the pca rollercoaster to see that the way ahead is not always only sadness and fear but if you want something enough and circumstances allow you still can achieve so much. 

I wanted to run this race since I was 20 and read of the first ever one. It took 30 years and (sadly) pca for me to achieve that dream and now it’s x4 ( I also believe I am the only person to have done the race 4 times with any T4 cancer). 

If you are reading this with despair of life perhaps think about what you too may be able to achieve despite being where you are and make the most of today and every day you can.

You can if you wish see what I have been lucky enough to achieve in the last 4 years on my site www.makethemostofit.org together with my personal hopes for the next adventure. 

I have my monthly blood test next week but then, I am off walking the 500 mile Camino De Santiago with my brother in memory of my late father who also had pca, it’s another impossible dream that may now become possible for me. Thanks for reading, never give up, Kev 

 

 

 

 

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 16 Apr 2019 at 11:55

Keep it up Kev. As you said previously plan something for everyday or the dark voices take control.

I feel a bit inadequate running a mere 5k Tough Mudder but hoping it will inspire me to do the full 10 mile ones. Reading of your exploits does give me strength to carry on and do more.

A little like yourself it was the PCa which shook me up and made me take a look at my life.

We mustn't let this disease take control.

Thank you

Phil

User
Posted 16 Apr 2019 at 16:21
I love watching your achievements on social media - what a star you are. Dad did most of the Camino last year and although he doesn’t have the extensive mets you have and probably took longer, he is about 30 years older so we were very proud of him. He is going back in June to do the stretch that he missed last time!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 16 Apr 2019 at 16:45
So envious Kev— I’m on industrial strength painkillers for my knees at the age of 51 and struggle to do my 15 hrs a week caretaking. I actually can’t even jog anymore nor kneel down :-((

I have worked my ass off for 30 yrs though. Good for you and enjoy every minute. I’m doing the same but in other ways lol

If life gives you lemons , then make lemonade

User
Posted 16 Apr 2019 at 17:18

Originally Posted by: Online Community Member
So envious Kev— I’m on industrial strength painkillers for my knees at the age of 51 and struggle to do my 15 hrs a week caretaking. I actually can’t even jog anymore nor kneel down :-((
I have worked my ass off for 30 yrs though. Good for you and enjoy every minute. I’m doing the same but in other ways lol

Chris I assume you have had the bad knees for ages and they are not related to your PC?

I ask because I am really struggling with hip pain at the moment and despite having had it looked at twice and being told it's arthritis it seems to get worse to the point it now disturbs my sleep if I lie on wrong.... 

User
Posted 16 Apr 2019 at 17:37
I’m nearly 4 yrs post op and this has been last 2 yrs. Had X rays etc and they checked the PET scans also. Just said it’s Osteo Arthritis but sadly my 9 yr old boy said I look like an old man walking yesterday. As Lyn says , I’ve been on daily Cialis for 3 yrs but I’m immensely enjoying the ‘up’ side to that way too much to stop ;-)).

I feel it may be cancer related — even lymphatic fluid pressing on nerves etc , but who knows ?? But I’m a proper grafter and I ain’t giving up easily although in proper daily pain. Just built a new Ikea double bed with draws and kitchen table and chairs etc. I feel like I’ve been in a car crash so can’t wait to get in lol

If life gives you lemons , then make lemonade

User
Posted 21 Apr 2019 at 08:45

I was sent this link from a lady I know in NZ who I ran the marathon des Sables with in 2018 and now has breast cancer.

there are many links to pca in the text and video so it’s worth a read/watch. Whilst I still run big distances it indicates that exercise in general is good to fight cancer ( under supervision if you are new to it or are upping what you do)

i went for a run the day after my first chemo, this video indicates I could have done something straight after chemo on the same day! If nothing else if you are starting chemo don’t be sedentary if you have the ability to do something.

get out and enjoy the sunshine today if you can 

kev https://fitness.mercola.com/sites/fitness/archive/2017/03/24/exercise-benefits-for-cancer.aspx

 

 

https://fitness.mercola.com/sites/fitness/archive/2017/03/24/exercise-benefits-for-cancer.aspx

 

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 22 Apr 2019 at 00:08
I’ve read quite a lot about the benefits of exercise. But I have stopped running as my knee can’t take it anymore so I do High intensity interval training. However I draw the line at weight training as I have also read that this increases testosterone which may be ok for a normal bloke but not so good if you have PCa.

Bri

User
Posted 22 Apr 2019 at 12:00

Resistance training is good for bone density. I think “gym bro” levels of lifting with supplements and whatnot will have a significant effect on T but mid range weights and reps won’t have that much of an impact especially for us older gentlemen 😀

User
Posted 22 Apr 2019 at 12:55

I clearly am no doctor but if there is any truth in the video /papers it appears that even moderate exercise has some positive effect. May be hogwash of course however I think most would agree even forgetting cancer a less sedentary lifestyle is probably good for most.

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 22 Apr 2019 at 20:19

Agreed.

Heart healthy yada yada.

So I need to put aside the four days of post bereavement drinking I have just done and pull my finger out.

I have two stone to lose and at least 10 beats per minute on Fitbit!!

 
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