I am 49 and in august this year I noticed simultaniously an increase in my night no1s, a pressure feeling near my coxix and very reduced fluid when with my wife so to speak. after 6 weeks I went to the docs who did a rectal exam and said that I should have a blood test and an ultrasound scan.
the results of these was a lump on my prostate plus two more lumps on my arota, my PSA reading was 342.
i then was referred to a consultant who did the rectal thing , said although he usually waited for results of further tests was sure I had prostate cancer , I have since had a prostate biopsy, MRI and bone scan. I am seeing the consultant again on Thursday for the results of all that. He put me on male hormone suppressants straight away Before any of the tests.
i am now very scared, when having the bone scan I could just see a small moniter showing my skeleton, it was all dull until it got to my pelvis where everything lit up like a beacon and then went dull again in my legs, I know I don't know anything about scan images but it did not look right , Thursday seems a long time away.
my wife is very supportive but at the same time genuinely thinks I will be ok , somewhat misguided I think. My dad is 82 and has had prostate cancer for 20 years, his PSA has never been higher than 20' my grandad died of prostate cancer at 88.
I can't get the darkest thoughts out of my head although I have already resigned myself for the near worst.
there is so much unfinished business in my life and I don't want it to stop, I want to see my daughter go to uni, graduate , get married and have kids, my sons discovering what they want from life and grabbing it, my wife getting gracefully and beautifully old with me , be there for my dad and mother in law when they need me in years to come, watch my football team get promoted, carry on running ultra-marathons but the dark thoughts say I may experience none if them. I have always been rubbish with hospitals, just the thought of a needle makes me shudder , I get the feeling a needle will be the least of my worries.
i know that until Thursday I don't know anything but all that I read on web sites does not improve my own personal amateur prognosis.
If you have read this, thanks as knowing someone probably will makes a difference, I don't want to spoil my wife's expectations until I have to and try hard to live every second of the next 2 days outwardly positively.
I first wrote this 2 days ago and since then read so much more and had support from others but bizzarely it didn't occur to me to post this on the PCUK forum, shows how I am not thinking straight already doh! I am sure I will be back Thursday afternoon to find out from real people who have been there what it really means if I manage to pull myself together as I am sure I will be in pieces.
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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Following another month of friends passing I wanted to again inspire (I flatter myself) others to make the most of life as every day is a gift.
i am writing this on a bus following finishing a 250k (150mile) race across the desert in Jordan .
I am 54 , diagnosed T4n1m1a nearly 5 years ago , have had chemo, RT, been on abi for over 3 years and still run further than I did before I was diagnosed . For what it’s worth I came 29th out of 73 runners , most were much younger and fitter than me .
So if you have been newly diagnosed and think that life is over maybe think again , most cancers dont like oxygen so do whatever you can do to keep that blood flowing fast even if ultra running is not your thing .
On day 3 of my race on a non stop 43 mile section in soft sand and 42c it was thinking of our departed brother Si that kept me going as he always said I was mad and I aim to stay as close to being a hatter as I can manage for as long as I can just to prove the great man right .
Remember , yesterday is history, tomorrow is a mystery but today is the present and you should never waste a gift ! I for one intend to die living . Carpe diem.
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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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 doing the 600 mile Camino de Santiago May 2019 |
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Hi, it’s been a while since I posted but I wanted to share where I am and maybe inspire people to make the best of every day no matter where they are on the pca journey .
So it’s 8.5 years now since I was told I may only have 2 , I decided to run lots through chemo and just never stopped (bit like Forest Gump).
I remember thinking that my situation was hopeless but it dawned on me that at my end whenever that may be I won’t say “I wish I spent more time being sad and staying in” but I may regret not pushing life to the max every time I could .
first the scores, T4N1M1A on diagnosis , PSA 342 . Today , PSA 0.12. I had a blip last September when it rose yo 0.28 in a month. That followed 6 months when I did not run much due to injury , double hernia and food poisoning .
why the drop again ? Obviously I dont know but I started running every day again in December (minimum 3.3 miles for the 33 men who die every day in the uk of this bu@@er of a disease) and average about 6.
I gave up alcohol on 31/12/22. Why ? Because I wanted to run for as long as I can and I thought it may help . Do I feel better ? Not much BUT , I have lost 13 lb, sleep like a baby opposed to having broken sleep before and my “motions” have improved greatly and my running is getting better .
I have run over 15,000 miles in the last 8 years . Next up is the Brighton Marathon in 4 weeks and then off to Bhutan for a 200k race with 35,000ft of ascent.
I have been on abiraterone since January 2016, I have been lucky , it appears to be working still , not everyone is as lucky I know .
I hope anyone reading this will realise that what you do can be up to you to some extent . I am no athlete , never very good but every day as my wife says. “If I feel ok it’s going to be a good day” and just do stuff .
From almost day 1 , PCUK , this forum, fundraising , speaking , writing a book etc have given me a sense of worth and purpose so i guess my messages are live life the best your situation allows every day , don’t worry about what you can’t change and so something to stop others being where we all are in time to come . Thanks for reading
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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Another update , took on the three Yorkshire Peaks with Ian (prosectomy 5 years ago) , Paul (stage 4 diagnosis 2 years ago) , yours truly (stage 4 diagnosis 2014) and met Aiden (prosectomy March 2023!) for a few miles too . We covered the 24 miles and 5,200 ascent of climb in under 10 hours (and I ran 3.3 miles first thing as well keeping my 2023 daily running streak alive. Why 3.3 miles minimum? Because 33 men will die today of prostate cancer in the UK alone.
We raised over £4k, got a double page feature on what and why in the Daily Express plus loads of other local media coverage .
Our average age 55 all ordinary guys .
So if we can do that please believe in what may be possible for you ? Anything anyone can do to raise funds, awareness and personal joy with a sense of purpose and worth has got to be worth it .
None of know how long we have, be it fitness or friends so don’t waste a minute and try any of those aims above to help no man ever have to be stage 4 again . Live for the day .
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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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 doing the 600 mile Camino de Santiago May 2019 |
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Update , PSA has stabilised at 0-22 ish for the last year with no change in meds , zoladex, abbi and prednisone.
Weekend just gone rowed 22 miles along the Thames in the Great River Race Saturday , walked Jeff’s football marathon march Sunday and went for a 6k run today . I know I am lucky to be here but firmly believe exercise that makes you sweat bashes the cancer in conjunction with NHS stuff , more veg less meat , no booze (gave up 31/12/22) and a positive attitude . Even made BBC breakfast today ! Nearly 9 years from a T4 n1m1a diagnosis .
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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Okay, so the consultant is pretty sure you have prostate cancer and you are already prepared for that being confirmed on Thursday; what you don't know yet is whether it is contained in the gland and curable or whether you are looking at containment. I don't think you can read anything into being lit up on the monitor - that was probably just the dye they inject so that they can see the pelvic area clearly. It's the dark spots we all dread.
My advice would be to download the toolkit from this site (if you haven't done so already) and start writing down the questions you want to ask at the appointment. If it is contained:-
- what treatment options would the specialist think suitable for you?
- Is he only recommending his specialism and is it possible for you to also see an oncologist (if he is a surgeon) or a surgeon (if he is an onco)?
- If surgery is a possibility, should you stop taking the hormones?
If the cancer has already escaped the prostate:-
- where is the spread? Soft tissue, bone, lymph?
- what hormone treatment regime are they recommending? To continue with the one you have already started or change / add another?
- are there any trials at your hospital and are you a suitable candidate?
- if the spread is fairly local, is there any benefit in trying hormone treatment now with radiotherapy later?
In either case, you should also ask:
- your Gleason score and how that number is made up (a G7 could be 3+4, 4+3 or 5+2 and it makes a difference!!!)
- your staging (a number and usually a letter as well so T2b or T3a for example) ... you might get this along with an N symbol and M symbol as well
- what kind of prostate cancer it is (adenocarcinoma being the most common)
You are young but by no means the youngest - we have members in their early 40s. My husband was 50 at diagnosis and he was horrified to be sitting in a clinic where all the men seemed so old and all the nurses and doctors just kept saying 'you're very young for this'!!! It would be helpful to know a bit more about your dad and if you have never really discussed it properly, now is the time. He was young at 62 so I assume that he either had a low-risk type which has behaved itself all these years or he had radical treatment and managed to reach the magic of remission? Or maybe he has been on hormone therapy all these years? If you don't know the details, ask him about his story - does he know what his Gleason was? If he had treatment, how has that affected him since? We were fortunate when John got diagnosed that my dad had already been there and was willing to talk frankly to help us make sense of it all.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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I don’t post much but I read all the posts and I have seen so many recently that reminded me of how I felt when I started this thread in 2014 so I thought it may help newer reluctant members here ( as I was then) have some hope. I do understand that not everyone is like me but on diagnosis I too had no idea what the future would be but did have my urologists prognosis of maybe only 2 years hanging over me.
I ran a bit before I was ill, maybe two plodding marathons a year , diagnosed T4n1m1a but since diagnosis running is what gets me through the day.
I have run every day for the last 420+ days but due to covid all my overseas ultramarathons have been cancelled.
on March 1st I started a 9 day 386 mile virtual race and ran/shuffled/walked 42 miles a day every day until I finished on Tuesday and somehow coming 4 th in the process and raising a few more £ thousand for PCUK. I am no athlete but prostate cancer has given me an inner strength I never knew I had to just go for it and live for the day whenever there is the opportunity to do so.
i have been very lucky, I have had abiraterone for over 5 years now, my PSA went from 342 to 0.1 which is where it has roughly been for years now, I know it won’t last forever but life is now so please if you are in a dark place mentally but have the physical ability to do something you like please do it as one never wants to look back on a wasted day in time to come.
make the most of it
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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Kev
to me it sounds like you have landed a really proactive Oncology consultant. Just about everything I have read in the last 6 months has suggested that at your stage of the disease and at your age and as you are strong and in otherwise great shape hitting the cancer with a baseball bat, quickly followed by chemical warfare and then a radioactive bomb is giving it the worst chance of surviving and you by far the best.
I wish you all the very best as you start on your treatent path
xx
Mo
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We havecavfriend that has just completed his chemo and his tongue turned dark green and everything tasted vile.
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Hi Kev
Sounds like you are tolerating the chemo really well so far. I can't advise you on the rise in your PSA as Mick's PSA was all over the place through chemo and he was far from a typical case fullstop. I do remember reading a lot of reports about PSA bounce in particular in relation to starting out on Bicultamide. I hope Si, Roy, Rob, Lyn or one of the other regular experieced posters will come on and comment. Have you tried texting Si for a chat?
I am sorry I am not able to offer sage advice but I just want you to know I am thinking of you and wishing you well.
xx
Mo
Kev I just checked back on my journal notes as I had something at the back of my mind. I had recorded this.. chemo 3 due and Mick's PSA has risen which has worried us both, especially as Mick is feeling so much better, however we were assured that this is quite common during the early stages of chemo as the cancer is doing everything it can to fight back against the chemo drugs ...
hope this helps a tiny bit
Edited by member 25 Feb 2015 at 10:37
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Brilliant Kev, you are an inspiration mate.
Im sure you will get to that finish line. Donated and shared on Facebook
Today is a good day mate
Bri
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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
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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
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Apparently, you can get a signed copy directly from Irun although it will cost a bit more because he doesn't have the buying & negotiating power of a multi-national distribution company 🤷♀️
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Thanks for the post irun. Whatever your doing you're doing it right.
P822 Welcome aboard.
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I am 49 and in august this year I noticed simultaniously an increase in my night no1s, a pressure feeling near my coxix and very reduced fluid when with my wife so to speak. after 6 weeks I went to the docs who did a rectal exam and said that I should have a blood test and an ultrasound scan.
the results of these was a lump on my prostate plus two more lumps on my arota, my PSA reading was 342.
i then was referred to a consultant who did the rectal thing , said although he usually waited for results of further tests was sure I had prostate cancer , I have since had a prostate biopsy, MRI and bone scan. I am seeing the consultant again on Thursday for the results of all that. He put me on male hormone suppressants straight away Before any of the tests.
i am now very scared, when having the bone scan I could just see a small moniter showing my skeleton, it was all dull until it got to my pelvis where everything lit up like a beacon and then went dull again in my legs, I know I don't know anything about scan images but it did not look right , Thursday seems a long time away.
my wife is very supportive but at the same time genuinely thinks I will be ok , somewhat misguided I think. My dad is 82 and has had prostate cancer for 20 years, his PSA has never been higher than 20' my grandad died of prostate cancer at 88.
I can't get the darkest thoughts out of my head although I have already resigned myself for the near worst.
there is so much unfinished business in my life and I don't want it to stop, I want to see my daughter go to uni, graduate , get married and have kids, my sons discovering what they want from life and grabbing it, my wife getting gracefully and beautifully old with me , be there for my dad and mother in law when they need me in years to come, watch my football team get promoted, carry on running ultra-marathons but the dark thoughts say I may experience none if them. I have always been rubbish with hospitals, just the thought of a needle makes me shudder , I get the feeling a needle will be the least of my worries.
i know that until Thursday I don't know anything but all that I read on web sites does not improve my own personal amateur prognosis.
If you have read this, thanks as knowing someone probably will makes a difference, I don't want to spoil my wife's expectations until I have to and try hard to live every second of the next 2 days outwardly positively.
I first wrote this 2 days ago and since then read so much more and had support from others but bizzarely it didn't occur to me to post this on the PCUK forum, shows how I am not thinking straight already doh! I am sure I will be back Thursday afternoon to find out from real people who have been there what it really means if I manage to pull myself together as I am sure I will be in pieces.
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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Irun, welcome as Bri says welcome even though it sounds a bit odd
You will find as much or as little support as you think you need on this forum,
Lyn has posted an amazing reply for you, just about all you ever need to know for that vital meeting on Thursday.
I know you said you were holding back from your wife as you maybe do not want to distress her unnecessarily but Roy also made an extremely valuable suggestion. Have her with you at that next meeting, and if you can have that chat with her and you Dad too. Oncologists, urologists or surgeons all expect you to have someone with you.There will be way too much information and a lot of questions you might forget having an extra pair of eyes and ears and a hand to hold is really helpful. You have told us she is very supportive so she probably really wants to be there with you anyway.
The Gleason score that Lyn mentioned is about the most important piece of information at diagnosis but from the info you gave us I don't think you have had a biopsy yet, you will only get that score once you have had the biopsy.
Finally until you have an actual full diagnosis be very wary about reading too much on the internet it is extremely useful as a tool once you know what you are dealing with but quite dangerous before then.
I will be thinking of you on Thursday ad wishing you all the best
xx
Mo
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Hi Kev,
No answers to your questions today because i hope you do not need the answers. it would be great to sit here in a few months time looking at your postings about pelvis floor exercises.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif
Give the kids a big hug as they go to school, they do pick up on things.
We both wish you all the best for today and really do know how your feeling.
Will be looking for your post later.
Best wishes
Si
Don't deny the diagnosis; try to defy the verdict |
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Kev
just to lt you know I am thinking about you today and wishing you all the very best.
xx
Mo
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Hi Kevin,
Just wanted to wish you luck for today. I, like most of us here, know what you're feeling right now.
I have been really helped by joining this site, there's always someone with good advice.
Keep in touch.
Steve
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Fair questions to ask & it shows consultant you are being pro-active. Although usually best not to mention the internet.
Make notes to all answers & don't be afraid to ask " why ".
Get as many bio details as you can. These can be useful later on even if not apparently appropriate now.
For example, I would be asking for a copy of the biopsy report.
Let us know how you get on & Best wishes.
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Kev
I am on a course all day tomorrow but will be thinking of you and hoping that you are able to get much more information and action. It must have been really hard telling your Children and even your ex wife but now that there are no elephants in the room you may feel a bit more at ease in dealing with all that is to come.
Stay strong, take lots of notes, ask as many questions as you can think of and try and get the name and telephone number of the clinical nurse specialist assigned to your case, if they say there isn't one,ask them to give you one so that you can contact her/him whenever you need to.
xx
Mo
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Good Luck today Kev
Get the staging sorted, then the choices of treatment become easier.
Best wishes
Si
Don't deny the diagnosis; try to defy the verdict |
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Well that's an oncologist on a mission, very proactive response.
I'd be delighted if it were me as he is giving you the best possible chance here.
Good news, if a little daunting.
Good luck
Allison
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Hi Irun
Sounds like he is going to throw all at from the start, and hit it hard, which is good news. Did you sort out the confusion with the M1?
Good Luck
Roy
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Hi Kev,
Sounds good to me. I was concerned about the Stampede lottery which might have given you HT only for example.
Your Onco sounds a good one !
You will still have the heavier duty HT treatments if ever required in the future.
When you say all lymphs, can you ascertain if they mean pelvic ones or more widespread. The R/T treatment suggests such ( locally ) but worth checking. Also, will the prostate be treated with full radiotherapy ?
I'd be very pleased with this pro-active approach which actually is more in line with the longer & better researched breast cancer approaches. Hit it hard and fast.
Should you be happier ? Yes, you should. It will be a bit of a rough time for a while but do-able. And there will be support & tips here to help you along I'm sure.
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Thanks again everyone, very reassuring. The n1m1 bit is about the cancer being in my groin area lymphs and outside my groin area lymphs as it apparently refers to any cancer spread outside the groin, luckily it's not in my bones though. Feeling good about it, am getting tired easily though, is that the cancer or the hormone drugs?
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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Could well be the HT kicking in + the aftershock of diagnosis which drains you for a wee while. Your body should adjust to the hormone changes but some fatigue can be part of the territory. Try to get sufficient rest time as that does help the body overall.
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Hi Kevin,
Glad you had a good day and everything went well, you also sound very positive which is a very good attribute to have when fighting this disease. Hope everything continues to go well for you, good luck with the rest of your treatment.
Regards,
Gerry
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Good for you Kevin for being so positive.
Wishing you a good night of restful sleep.
Best Wishes
Sandra
We can't control the winds - but we can adjust our sails |
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Great news mate, hope it continues.
Keep in touch
Si
Don't deny the diagnosis; try to defy the verdict |
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Great news Kev on all fronts long may that continue.
xx
Mo
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Glad it went as well as it could Kev
All the best
Bri
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Good stuff Kev,
glad to hear you are responding well to the treatment to date.
Hopefully chemo will be another tool to push things onwards.
Thinking of you,
Kevin
p.s. Kev / Kevin, one of us is going to have to change our names :)
User
Hi Kevin,
Really pleased everything went well for you today. Great news about your PSA figure too. Hope everything continues to go well for you.
Good luck with your plans for the Brighton Marathon, I'll certainly support you, if I ever get chance to earn any money again. I'm still sulking about having to cancel my Reading Half Marathon entry due to my heart problems.
Anyway, hope the treatment continues to go well.
Steve.
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Hi Kevin,
It sounds all good so far congratulations on the psa result that's brilliant news. You are doing tremendously well keep going forward.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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Think I've read that sore feet can happen with the Taxols. Using skin treatments such as Palmers cocoa butter might help.
Tongue & throat sound like reactions & they may play with the steroids to help you.
User
Kev bit of info here. It mentions something in this link about numb and or tingling hands or feet and also soreness to the soles of the feet. Just go on the link and scroll down
Hope u feeling ok
bri
https://www.google.co.uk/url?sa=t&source=web&rct=j&ei=Pki9VPa2LIvlUor0gagO&url=http://m.macmillan.org.uk/article/name/cancerinformation-cancertreatment-treatmenttypes-chemotherapy-individualdrugs-docetaxel&ved=0CB0QFjAA&usg=AFQjCNGeKh9vwu9tmlyBRxCzPBKFnGO5iQ
Edited by member 19 Jan 2015 at 18:19
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Kev
Mick had tingly hands and feet at times during chemo, he did not have the black tongue thing but that is a very common side effect of 2 groups of drugs that I know of, one is certain antibiotics and the other is from drugs containing Bismuth (commonly used in indigestion/acid reduction treatments)
Anti biotics are often given with chemo as a preventative measure so if you were given these it may be them not the Docatexel itself. Definitely worth checking with your Oncologist tomorrow as he may be able to change that about a bit.
I believe it is caused when drugs iterfere with the naturally formed bacteria in the mouth and can produce changes in clolour from greeny brown to black and a furry sort of feel to the tongue. I am also fairly sure it is harmless just a bit weird and should fade in between treatments and go completely at the end of treatment.
Good luck tomorrow
xx
Mandy Mo
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Hi Kev,
So you had Chemo and so far have run 12 K, well if i had done that i would have sore feet and sore knees as i would have been crawling home.
Black tongue, yep i have just eaten a bag of Thornton liquorice toffee and you know what my tongue is black.
Sore throat, loads of bugs going around, if i stubbed my toe it was all cancer, shut my finger in the car door it was cancer.
You are doing great my friend, when you messaged me to say you was hoping to come to Newark i said to the wife he has Chemo on Tuesday and we are meeting on that Saturday, no chance. You know what i think you will be there, probably you will run there with your wife in a trailer (because she does like a wine http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif)
When i look back at my first Chemo and how i felt you are doing just fine, 12k, 12 bloody K.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif
Ring anytime
Si
Don't deny the diagnosis; try to defy the verdict |
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Kev,
Hope you're getting treatment soon. Not right that you are getting so much pain. Try to focus on ignoring the pain as you do when you're nearing the end of a marathon.
Praying that you are sorted soon. There are drinks on the bar in Newark waiting for us !
Steve
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Sorry you're in such pain from the stimulation of your bone marrow. (to combat your neutropenia). I think about 40% of people do get bone pain as a side effect. Often it can be managed by paracetamol, as long as your chemo team/ oncology say its OK to take. I hope you got the sister's phone call...it sounds blooming uncomfortable.
I do hope you're feeling a bit better this morning...
Sue
Edited by member 22 Jan 2015 at 09:18
| Reason: Not specified
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Kev
your WBC count is very low indeed at 1.4 a condition called Neutropenia .. very common in high dose chemotherapy I hope your doctor also told you that it is very important that you follow the chemo advice and do not eat fruit that does not have to be peeled, brie and other soft cheese that is made from unpasteurised milk etc etc. during spells of neutropenia you become very prone to infection. The drug you are being given belongs to a group of human growth factors their job is to stimulate bone marrow to produce more white cells for some people this can produce really bad pain usually in the back, hips and long bones of the arms and legs. It can be counter treated with specific pain medication. The slightly better news is that the growth factor is a natural substance and as soon as treatment stops the side effects should go.
It may just be your very fit body reacting strongly to the alien chemo, from the sound of it your Onco has gone for the highest dose and after the first 2 or 3 sessions all of these things may ease off. He may decide to reduce the docetaxel dose a little bit. Is your Oncologist aware that you are still running? you may need to curb back a little until things settle down.
The main thing here is you should not have to suffer, there is pain relief medication that can help.
When you started chemo you should have been given a special booklet with all the numbers to contact in the event of problems. If they do not ring you go to the chemotherapy suite or ward and someone will have to talk to you then!
I will be thinking of you today and wishing you speedy relief.
xx
Mandy Mo
User
Kev I've taken a look at the info on the Macmillan site and it sounds like the pain is likely to be a side effect of the Zarzio. Makes sense really if the pain started following your first couple of injections. I've tried to put link below
http://m.macmillan.org.uk/article/name/cancerinformation-cancertreatment-treatmenttypes-supportivetherapies-haematopoieticgrowthfactors
bri
Edited by member 22 Jan 2015 at 07:46
| Reason: Not specified
User
How's it going Kev?
Better I hope.
Steve
User
Sorry for the delay in response, following my last post I ended up at A&E, so much pain I could only just walk, my temperature was 38.1. They gave me morphine and about 2 hours later the pain went, I had two types of intravenous antibiotic and a chest X-ray , my blood abc had increased to 2.1 so they sent me home at 5-00 am with co- Codamel. , went to bed till 12-00 then had call from Marsden who were concerned about another blood count and that A&E had not given me further antibiotics. Asked me to come in and then admitted me overnight for 4 more shots of antibiotics and lots of regular blood tests. My consultant agrees that I probably had a bad reaction to the jabs as I have had no pain relief apart from the morphine and have had no pain since my evening in A&E. So I am fine I think, they only panicked because my temp spiked for about an hour and I am convinced that was because I had a hot water bottle strapped to my back and was in so much pain I was white knuckle gripping furniture. Just been told I can go home so that is good news!!!
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
User
Kev,
Been worried about you, hoping they were sorting you out. Hope you're feeling a bit better now.
I thought they would admit you as you seemed to be in so much pain. It's a bit scary when you just wonder when it is going to stop but at least, when you're in hospital you're in the best place to get sorted.
I hope after the last couple of days you have a really nice weekend.
Hope it gets better for you.
Best Wishes,
Steve
User
Good news Kev
I am really pleased that you are now home and back on track. Just try and take it a little bit easier I worry that you may be pushing yourself a bit too hard during your chemo.
xx
Mandy Mo
User
So Glad that you are back home Kev and things are easier but I have to agree with Mandy Mo , taking things a little easier for the time being doesn't mean giving up on your old way of life , it just means taking care of yourself and slowing down for now. These are strong treatments that you are having. Be kind to yourself.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
So in similar words of the great Nikkon Steve, Today is an important day as I am 50.
5 months ago my wife asked what I was doing for my 50th and at that time 50 was just another number, I had plenty more to follow and as nothing was changing I was not that fussed.
Now of course this birthday has significance as with my realistic prognosis this needs to be my 50th, 60th, 70th, 80th and all those in between too only without the special events that go with or around getting older (retirement, grandchildren, kids special birthdays, weddings, graduations etc).
So today I have a good day planned with by best mate, brother and wives (all our wives not multiple for my brother!) but it will be hard not to get sucked into what will probably not be in the years to come.
I know that right now I am in lucky in so far as I feel ok, chemo has so far been kind (too kind perhaps, is the dose not strong enough), I ran 16 miles yesterday in training for the Brighton marathon in 7 weeks, have raised £14k so far for PC UK in the process (which makes me feel it's worthwhile as it may help others) and still have a normal life much of the time but dark thoughts are never that far away.
Reading most posts on this forum I can see that there is both hope and sadness and even with the hope goes much pain and effort along the way. I hope that like many others that staying fit and having an improved diet it will give me the best outcome however I can see that there are no guarantees.
So today is an important day, it will be a good day but due to the PC will have more significance, it may help me enjoy it more of course as time, especially feeling good time is not to be wasted ever again.
Thanks for reading if you got this far, 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
Hi Kev,
I just wanted to say that I think you're amazing training for a marathon while having chemo.
My dad's just been diagnosed with aggressive PC. He has a Gleason score of 9 and we're just awaiting further scans to see if it's spread. He is 75 but runs regularly. He did his last half marathon in October. One thing that upset him was that he might have to give up running but you have given me hope that maybe he can carry on, but maybe at his age, stick to the 5Ks and 10Ks :)
I've just read through the whole thread and am pleased to hear that after the awful time you had when you first started chemo, you are now doing really well.
I hope you have a really special 50th birthday. You deserve it! Look after yourself.
Chardonnay
User
Lovely post Kev. HAPPY BIRTHDAY. You are doing so well keep it going I am still not sure about the running and the chemo together but one thing for sure you are doing it your way and doing it in stylehttp://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif
BFN
Julie
NEVER LAUGH AT A LIVE DRAGON |
User
Happy 50th Birthday, Kev.
What a great post! I hope you have a fantastic day. Enjoy every moment. Sorry I can't be there to buy you a drink, perhaps on your 60th? That would give me a great deal of pleasure, for obvious reasons.
I will raise a glass to you this evening. Here's to many more Happy Birthdays !
Remember... Today is the first day of the rest of your life... can't think where I've read that before.
Steve
User
HAPPY HAPPY BIRTHDAY Kevin.
After all you've been through the past few days it's great that you are better enough to enjoy your milestone, the first of many !!
Best wishes for your special day. I know you will enjoy every minute of it and not just because you feel you have to because you have PC.
We can't control the winds - but we can adjust our sails |
User
Happy birthday Irun - have a lovely day.
Perhaps, as you may not live to be 100, you could cram some extra life in now while you are still fit & healthy ..... take a leaf out of your brother's book and get a few extra wives while you still can!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Kev
HAPPY BIRTHDAY or even Happy half centuary better than any England cricketer can achieve right now.
Wonderful post has made me smile as I am doing a 5k run in May with Ness Scott and the twins, expecting Si to be there to chuck revolting paint stuff at us. I ran 2k yesterday and walked the other 3 so each month I need to go up a gear. I could have done this without thinking about it 30 years ago!!
You are tolerating your chemo really well and that is probaby down to you being very fit and having no other medical issues. Positive Mental attitude is also important and I think all athletes have that in bucket loads. I only have to look at Usain Bolt and I get a serious mental attitude and me having a nickname like Mo makes that even more amusing.
Have a fabulous time with your famiy and their many wives and of course with your good Lady too.
xx
Mo
User
Hi Lynn, sadly? I beat my bro as I am on wife 3 (all my doing) and my bronips on wife 2 however the happiest I have ever been in a relationship. Just got back from wild night out so still behaving like I am 19, football tomorrow eight a few mates Si mire Kaddish behaviour before back to reality of a long run followed by chemo. Thanks did bothering to post, I love this forum as it may not change reality but I never feel alone. 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
Happy belated birthday kev...hope the football goes well...I'm just off to the gym then this afternoon j will be on the terraces watching the rugby and knocking Bristol for six...finish off my going to the pub as the house will be full of cooing ladies at a baby shower.....another American folly..
Sounds like you are doing really well
Any advice for a knackered achilles tendon
Bri
User
Hi Kevin,
I was diagnosed just before my 60th and found myself hospitalised on the actual day due to a bad UTI! So I do know the poignancy of a birthday. Each birthday that has followed is greeted with much enthusiasm and that positivity keeps bringing the birthdays on, soon be by 63rd so managed to survive with bone mets for three years so far which is great. Maintaining your running whilst undergoing chemo says loads about your overall levels of fitness which will help you deal with the down times as well as can be expected. Wonderful fund raising too.
I recall celebrating my fiftieth as it was around 20 years since I had had testicular Cancer and for the first time saw light at the end of the tunnel. Within ten years that light was extinguished but looking at the quality of my birthdays and my life sustains me well and this is so important if you can keep those dark thoughts at bay.
Hope to meet up in June. I know you wanted to get to Newark but were not well enough then. Glad to see you are now thriving much better.
User
Hi Kevin,
I'm really sorry to hear about your PSA rise, especially at a time when you were least expecting it.
I'm pretty much a novice when it comes to PSA levels with various treatments, but I know how worrying a rise can be. Hopefully, a change of medication will sort things out. My PSA almost doubled just before I started radiotherapy, so I know how you feel.
You have been such a good friend and always helped me through difficult times with your supportive posts, I only wish that I can do the same for you now.
I just wanted you to know that I wish you all the luck in the world that things will get back on course, you were doing so well with your treatment. I'm sure it will.
Try not to worry.
Your friend,
Steve
Edited by member 24 Feb 2015 at 23:11
| Reason: Not specified
User
Hi Kevin,
That's really good. Fantastic publicity for the cause. I'm sure you will raise more money in sponsorship for the marathon. I envy you being able to complete. My plans to run the Reading Half Marathon on Sunday had to be shelved months ago when I had the heart attack. My cardiac consultant told me I wouldn't be able to run it and he was right, not fit enough. He said he might agree to me doing it next, providing treatment goes well.
Anyway, have a great day tomorrow and I hope your team wins.
Steve.
User
Good man Kevlaa,
you were floating around on twitter earlier tonight as well, posted up by the PCUK feed.
All the best
Kevin
User
Well done Kev, Proud of you mate
Si
Don't deny the diagnosis; try to defy the verdict |
User
Well done and good luck in the Marathon!
Best wishes,
Trish
User
OMG another super hero, now I see what the running is all about. You see for me it's a bit difficult to get my head around running as I have only done this twice in my life, once was for the 5c Bus along the London rd (heading into Southend)http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-kiss.gif the other time was when I nearly missed the 5c back in the opposite direction. http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-kiss.gif
What I am saying is if you are running for a purpose IE you might miss your Bus then I get it, but running for the sake of running this really doesn't make sense to me.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-kiss.gif.
I am only joking (not about running for Buses that bit is real ) but WELL DONE YOU. all I can say is , we need runners like you in life the £13000 raised also struck a chord as this was Trevor's starting psa.
So as long as you feel well enough KEEP RUNNING.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
User
Well done Kev you are an inspiration to us all,keep it up.
Roy
User
Hi Kev,
Hope it all goes really well today, and you have a great day! Thanks for posting the link so we can all see the amazing things that are being done to raise the profile of PCa.
Well done for making a difference,
Miss x
User
Kevin, it is a great article and the thing that struck me most was that you have a proper best mate and clearly think the world of each other. But I am going to be a bit of a party pooper - with an HR hat on, I wonder did you speak to work about going to matches and completing a marathon while signed off sick? In some companies, this article would be a huge flag to gross misconduct - I hope that your company are supportive?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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brilliant Kev
another superhero you rock i hope you have a fantastic day. i know you are careful not to push yourself too hard.
xx
mo
User
I think if kev did a manual job some questions may be asked but maybe not.....but he doesn't.
We all know that cancer effects us all individually and we all cope and deal with it individually. It is clear that one of Kev's strategies is running....He even admits himself he may not be well enough when it comes to the day but it's also obvious he is going to do his upmost to do this.
As a manager I would certainly not have any issues with this as it's not just our physical well-being that has to be considered
Bri
User
Yes Bri but you work in a culture of wellbeing - I think banking may be a different kettle of fish. All I was saying to Kev was had he had that conversation with his employer to avoid getting a stage 1 letter from HR! I worked in local authority, like you, and this would have triggered a disciplinary investigation without a shadow of a doubt, although you would hope the outcome of the investigation would be in the employee's favour.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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I understand where you are coming from Lyn and if someone was off with an undiagnosed condition for example, I won't give an example or I risk putting my foot in it...then I would question it. But an employee going through chemo for an aggressive cancer I'm not so sure.
But I concede I may be naive regarding other institutions procedures
Bri
User
I really hope my comment hasn't come across as critical of Kev .... it wasn't meant to be. I just suddenly foresaw a potential problem and wanted to be helpful.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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No I don't think it did Lyn.
I was just throwing my twopenneth in :)
Anyway, on with the rugby
Bri
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You are amazing Kevin and hope all goes well. Will donate to your page tho you wont recognise the name.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif El
User
Hi Kevin,
Well done for yesterday, you've helped all of us by your efforts. I think your employer would be proud to have you within their organisation for the determination and strength of character you have shown in fighting this disease. You are a very good advert for the quality of employee they employ. It nice that they acknowledge this.
I'm feeling rather sick because the Reading Half Marathon takes place today. Feel as if I'm missing the party. Still, I'm going to enter a couple of shorter distance races a soon as I'm able.
I'm probably not going to be posting much until I sort certain things out. I've got a feeling that my internet has just been cut off, maybe the phone too and I don't want to use the data limit on my mobile too much because I've already gone over my limit while in hospital. I plan to return to work next weekend and I've just been told that my benefits will stop straight away, it's just the Department of Work & Pensions way of helping you out: to live with no money for a month or so after being on very limited benefits for four months. We've decided to put the house up for sale this week.
Kevin, keep up the fight, you're showing all the way to battle this horrible disease.
Hope to see you in June?
Steve
Edited by member 22 Mar 2015 at 16:15
| Reason: Not specified
User
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
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
Lots of news today and Kev yours is as good as it can be. Hope you celebrate the news, long slog worth it.
User
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
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 kev
Brilliant results, very pleased for you. Keep running and enjoying life.
Lesley
User
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
Hi,
That's really great news, Kev.
Keep fighting.
Steve
User
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
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
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
Brilliant news Kevin,
Keep on running....
Arthur
User
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
Well done you great news.
Carol
User
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
It makes a change to see some good news Kevin, well done mate.
Chris.
User
User
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
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
Great post Kev, as always. Very uplifting despite the hell that is PC. I hope your Arctic trek goes well.
Ian
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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
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
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
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
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
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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
User
Originally Posted by: Online Community MemberSo 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
Dear irun,
Reading your post and history has really helped me. I have only recently posted on the forum about the shock and worry following my husbands diagnosis which is similar to yours (T3aM1N1, PSA 287 and Gleason 8).
He was diagnosed in July and I still feel very much as you describe in your first posts. So, thank you for your update and advice which I am sure will help others feel more positive, it has certainly uplifted me today.
Mrs MAS
Edited by member 15 Oct 2019 at 14:12
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I agree wholeheartedly Irun. Carpe Diem
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I follow your ultra running, it gives us great strength. David was diagnosed 4 yrs ago Gleason 9 Tb3 N0 M0. He is 69, we have an acre of garden, grow our own food, swim twice a week over an hour each swim, he sings and plays every day. We are also have a house gym we use in the winter. He does charity gigs to raise awareness about PCa and works with a local charity. Keeping active is good for each one of us, live each day to the full. It ain’t no good sitting in deaths waiting room is it.
Thank you Irun, you are an inspiration to many.
Leila.
User
Pleased to see you are still in there kicking ar** Kev.
Keep doing what you do best and get some more overseas marathons under your belt as soon as this global lockdown is over.
Keep safe and well
Roger |
User
Lovely post Kev and great inspiration. Good luck for the marathons to come and keep well !
User
Great update Kev. You are an inspiration.
Stay safe and keep well.
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Thanks for that Lyn, ordered and look forward to reading Kev's book.
Roger |
User
Thanks Lyn, I’ll be buying it when it comes out.
User
Thanks for the 'heads up' Lyn, just pre-ordered my copy.
Kev is an inspiration to us all.
User
Look forward to reading Kev’s book.
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Hi irun
Your update has prompted me to post my first post! The reason being that I want to say a massive thank you to you for everything you are doing. I got diagnosed last November and it has been a bit of a roller coaster so far as I think it is for most on this forum immediately after diagnosis. As someone who has always run a bit through adulthood though, I have found reading about what you have done massively uplifting and a big help to me in keeping up my running, which in turn has helped me to get through the first few months of this new path I am on.
Interesting to hear you have given up alcohol all together. I have been tempted, but enjoy a few beers watching sport etc., and is such a big part of my social life so have gone for moderation post diagnosis rather than cutting it out all together. That being said I can imagine cutting it out entirely some day for similar reasons to you.
Anyway, thanks for the update, keep up the good work and good luck with Brighton - a cracking Marathon - and then Bhutan.
User
Great to hear Kevin your still doing your crazy challenges. Positive mental attitude you have it in spades.
User
Well done chaps, a truly inspirational effort and an example of how you can show how life goes on unfettered by PCa.
Roger |
User
Congratulations Kev ét al. Truly inspirational and so helpful for the cause. Many of us have been so lucky with an initial T4. Keep going brother !
User
Hey Irun,
What an achievement! Well done to you and your mates. Thanks for all you do for the cause.
Best wishes,
JedSee.
User
Thank you for all the work you do Kev, and thanks to the other runners. Our men deserve the best.
User
Very well done to you all. A true inspiration, you should all feel so proud.
I think I’m doing well just going to the gym 🤣but what you did was amazing.
I bought your book Kev and after reading it bought another copy for my friend with PCa. Being a runner himself he truly understood the remarkable achievements you have made.
Phil
User
Absolutely amazing you are an inspiration and give hope to so many people
best wishes Ann
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User
Hi,
Sorry to see you here, but welcome to the site. You don't say what the urologist? gave you as " male hormone suppressants" [your words] ? Your PSA, although high is not the highest on here, and I know that it is easy to say but try not to worry until you know more on Thursday, be positive, there are many more treatments now available to help. Have you downloaded 'The Tool-kit' from PCUK, it comes with a wealth of knowledge.
Ask away at any time as there are lots of knowledgeable guys and Gals on here willing to help.
Good luck for Thursday.
Chris.
PS. When you have some figures, can you up-date your profile, as it helps us to help you, after we know what treatment you are given / offered.
PPS. If you click on anyone's profile you can see what treatment they have had and are still having.
User
Hi,
So sorry you find yourself here, but rest assured this site gives me nothing but comfort, It's difficult to offer any advice until you know if and what you are facing, try to remain optimistic and positive re Thursday and once you know and your ready to share then there will be plenty of support and guidance from the folk on here, maybe speak to one of the specialist nurses on the helpline to get you through the next couple of days.
wishing you well, Joanne.x
User
Hi Irun
Firstly welcome to the forum that non of us wish to be members of but we are where we are, the members here have a wealth of experience so ask any questions you have, and remember nothing is taboo.
We all remember the start of our own journeys and can relate to the emotions you are going through, but once you know the whole picture ie the results,then things will ease as you come to terms with it all and have made your decision on your treatment path. Beware of trying to interpret the bone scan as I did the same and was convinced it had spread everywhere but found to my relief it hadn't so wait for the results and remember to plan what questions you want to ask your specialist and either write down the answers, or ask if you could record the conversation for future reference, also take someone with you, as it is a stressful time and you will forget what was said as your brain will find it hard to take it all in.
A PSA of 342 is high but the hormones you are on should bring that down, there are people with PSA into the thousands on the forum and still going strong, mine was 94.4 at the start 2 years ago and am doing OK. Order the toolkit from the site as it will help once you know the full picture.
Also something to consider is your diet, now I must stress this is a personal choice, but some of us have cut out dairy, red meat, eggs etc even though it might only give you a feeling that you are doing something to combat this, I found it helped me feel empowered and I lost weight so a bonus.
All the best
Roy
Edited by member 04 Nov 2014 at 10:04
| Reason: Not specified
User
Welcome, but sorry for the reason that brings you here. It's devastating to be told you have PCa and one is likely to think of the worst scenario. However, your consultant has started you on HT to restrain the cancer and this along with others treatments if appropriate, could give you many years - how long could depend on the type of PCa you have and how well treatment works for you. Also, refinements to existing treatments and new ones being trialled or about to become available can be expected to extend lives of men with PCa. So do try to set aside those negative thoughts and be positive. Do keep us advised.
Barry |
User
Hi and welcome if you know what I mean. Re the bone scan it is quite possible that what you saw was the radioactive contrast that they injected gathering ready for you to get rid of it...
As already advised download the toolkit as it provides invaluable advice..
This without doubt is the worse time. Once you have the full results you will know what is happening and you will be able to gain an element of control.
Keep posting...everyone here will provide support
Bri
User
Okay, so the consultant is pretty sure you have prostate cancer and you are already prepared for that being confirmed on Thursday; what you don't know yet is whether it is contained in the gland and curable or whether you are looking at containment. I don't think you can read anything into being lit up on the monitor - that was probably just the dye they inject so that they can see the pelvic area clearly. It's the dark spots we all dread.
My advice would be to download the toolkit from this site (if you haven't done so already) and start writing down the questions you want to ask at the appointment. If it is contained:-
- what treatment options would the specialist think suitable for you?
- Is he only recommending his specialism and is it possible for you to also see an oncologist (if he is a surgeon) or a surgeon (if he is an onco)?
- If surgery is a possibility, should you stop taking the hormones?
If the cancer has already escaped the prostate:-
- where is the spread? Soft tissue, bone, lymph?
- what hormone treatment regime are they recommending? To continue with the one you have already started or change / add another?
- are there any trials at your hospital and are you a suitable candidate?
- if the spread is fairly local, is there any benefit in trying hormone treatment now with radiotherapy later?
In either case, you should also ask:
- your Gleason score and how that number is made up (a G7 could be 3+4, 4+3 or 5+2 and it makes a difference!!!)
- your staging (a number and usually a letter as well so T2b or T3a for example) ... you might get this along with an N symbol and M symbol as well
- what kind of prostate cancer it is (adenocarcinoma being the most common)
You are young but by no means the youngest - we have members in their early 40s. My husband was 50 at diagnosis and he was horrified to be sitting in a clinic where all the men seemed so old and all the nurses and doctors just kept saying 'you're very young for this'!!! It would be helpful to know a bit more about your dad and if you have never really discussed it properly, now is the time. He was young at 62 so I assume that he either had a low-risk type which has behaved itself all these years or he had radical treatment and managed to reach the magic of remission? Or maybe he has been on hormone therapy all these years? If you don't know the details, ask him about his story - does he know what his Gleason was? If he had treatment, how has that affected him since? We were fortunate when John got diagnosed that my dad had already been there and was willing to talk frankly to help us make sense of it all.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Sorry Bri - my post crossed with yours!
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Irun, welcome as Bri says welcome even though it sounds a bit odd
You will find as much or as little support as you think you need on this forum,
Lyn has posted an amazing reply for you, just about all you ever need to know for that vital meeting on Thursday.
I know you said you were holding back from your wife as you maybe do not want to distress her unnecessarily but Roy also made an extremely valuable suggestion. Have her with you at that next meeting, and if you can have that chat with her and you Dad too. Oncologists, urologists or surgeons all expect you to have someone with you.There will be way too much information and a lot of questions you might forget having an extra pair of eyes and ears and a hand to hold is really helpful. You have told us she is very supportive so she probably really wants to be there with you anyway.
The Gleason score that Lyn mentioned is about the most important piece of information at diagnosis but from the info you gave us I don't think you have had a biopsy yet, you will only get that score once you have had the biopsy.
Finally until you have an actual full diagnosis be very wary about reading too much on the internet it is extremely useful as a tool once you know what you are dealing with but quite dangerous before then.
I will be thinking of you on Thursday ad wishing you all the best
xx
Mo
User
Hi Mo, he says in his first post that they have done a biopsy.
Irun, I was thinking about your wife last night and although she is being upbeat in front of you, I bet she understands just as well as you do. It is our job as wives, partners and supporters to be positive and she will perhaps be doing her best not to show you how worried she is. As Mo says, having her at the appointment will be much better for you both in the long run
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Fantastic thorough advice from Lyn, as usual.
User
Lots of good advice above Irun, as I'm sure you will appreciate at this tough time.
Just to mention; be wary of trying to cover the whole internet for information etc. Some is dubious. Here is good . Take it one step at a time & learn gradually but thoroughly the best information.
Be wary of any gloomy predictions you may be given by some medics. There are many men who exceed their predictions incredibly well. Your psa may seem on the higher side but it can be dropped dramatically under treatments.
Like yourself, I was started immediately on treatments before all scans were done. Actually before a biopsy was done. So it's not unique, just an experienced urologist knowing their job.
There has been a big leap forward in treatments available over the last couple of years or so . These will be available should you need them. So focus on what can be done rather than negative thoughts as best you can. There is plenty of support here as Mo has mentioned.
User
My bad Lyn I missed that, sorry Irun, no doubt you will get the Gleason score on Thursday
xxMo
User
Thank you al so much for responding to my (initial sadly) cry for some noise.
Such calm advice and I am sure that your advice and words will be relevant, I just have to get through tomorrow morning.
Sorry if I mislead you about my wife, she was there at the first consultant meeting and will be there tomorrow, she knows what I probably have but does not want to do any research or discuss with me until she knows what I actually have. I do get that but as you all know I may or may not be listening properly to everything that is said or hang on the wrong word and whilst I am a novice I do know a bit now about some of the treatments and side affects however it will all be new to her so that was my aim but that's too late now anyway.
I will stick some numbers on my profile as I get them and become an amateur expert about what they mean as time goes on but please please do give me any wise words you can think of.
One question I have is based on reading one of the other contributors notes on this site who over the last year or so has talked about getting the right consultant and if needs be going private? I have no idea who is good or not or if NHS v Private achieves anything other than a nice carpet on the floor? I do have private healthcare via work but have never used it as I have to have it in my job but have not been to a hospital for anything serious since I had my tonsils out age 6 and have not been off work sick for over 10 years so not being well is sooooo not me.
Lastly, am I expected to agree with what they say there and then or do I get time, how do I make an informed choice when I am not informed?
Sorry
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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Hi Irun
Once you have your results tomorrow you will be given your options, but usually surgeons will want to cut it out if appropriate, and oncologists will want to zap it, you will not be pressured to make a decision straight away, so take a short time to research and commit to the path you choose.
If I were you I would want to utilise the private sector as it will give you control of your treatment to some extent, and access to Surgeons and the latest equipment that may be in short supply in the NHS if having RT, Scans etc.
You have the option of a second opinion if you want it, and if you do go private as you will be given more time as you are paying for their time.
A while ago the top ten surgeons were published in the Daily Mail, so if that is your chosen path then you can google it, and make your choice, but with a high PSA it may not be an option, but until you know your results its hard to advise.
All the best and good luck
Roy
User
Hi Kev,
No answers to your questions today because i hope you do not need the answers. it would be great to sit here in a few months time looking at your postings about pelvis floor exercises.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-laughing.gif
Give the kids a big hug as they go to school, they do pick up on things.
We both wish you all the best for today and really do know how your feeling.
Will be looking for your post later.
Best wishes
Si
Don't deny the diagnosis; try to defy the verdict |
User
Kev
just to lt you know I am thinking about you today and wishing you all the very best.
xx
Mo
User
Hi Kevin,
Just wanted to wish you luck for today. I, like most of us here, know what you're feeling right now.
I have been really helped by joining this site, there's always someone with good advice.
Keep in touch.
Steve
User
Hi
Probably the worst news.
My biopsy came back Gleason 5+5 ie 10
Doctor said I was T3BN1M1 but then said it was in my lymph nodes but bone scan was clear unusually (so I don't get the M1 bit?)
Said can only contain/slow but not cure
Apparently I should be able to go on the "Stampede" trial which my oncologist said was good.
Under no illusions now, not quite borrowed time but I guess I wont see another 10 years, not sure how I will tell the kids ( I have read the Macmillan stuff on it but it still wont be easy).
Need a CT scan now to see if it has spread to other lymph glands apart from my groin. Then on Goserelin/Zoladex 10.8mg 3 monthly, no idea if that is whats best but I was given no other options.
Just got to get on with it now I guess?
Kev
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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Hi Kev,
So sorry to hear your news, time to sit down a digest.
There are loads of options your oncologist has just mentioned one.
You have my number if you need a chat. you need to clear up the staging ring your GP and ask for a copy of the scan report and stay away from Dr Google.
Stay strong mate
Si
Don't deny the diagnosis; try to defy the verdict |
User
Kev, I am so very sorry about your results. I am not in a position to advise you medically but you do need a little time to digest what you have been told and to ask for guidance on the grading of your cancer. There are others on this forum like Lyn and Roy who will be able to explain what all those letters and numbers mean.Also you can call the team on the PCUK site and ask the to go through things with you.
Right now I think you need emotional support more than anything , please take up Si's offer and talk to him, his diagnosis was worse than yours as he has extensive bone mets as well, but he can tell you all about his experiences with private care as well. If your company pay for it then in your circumstances I would use it. First of all you will get seen so much quicker, your tests will be repeated more often and you will get more time to ask questions. Most important of all you may also be given more treatment options.
There are a lot of tretaments out there and starting you on Zoladex is one of the most common first line treatments.
If your wife feels that she needs some support to, then ask her to join in and post, It is how I first got involved when I needed support and help.
Stay strong and until you have had a human being explain everything to you as Si says keep away from Mr Google.
xx
Mo
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My OH did the STAMPEDE trial and found the extra monitoring on bloods and extra appointments reassuring - so that is worth considering.
A lot to think about at the moment, so take a bit of time with someone who can explain everything and it may not be as bad as it first sounds to you.
Some people are on HT for 10 years plus. Lots of stories on here may reassure you a little.
You need a good onco. Try to get recommendations if you are unsure about yours.
The main thing is that you have caught it NOW and can start to do something about it.
All the best
Alison
Edited by member 06 Nov 2014 at 16:23
| Reason: Not specified
User
Hi Kev,
Sorry to see you are dropped in towards the deep end . However , you have I suspect, more options of treatment which haven't been discussed until all the scans are done. Much depends on how adventurous your oncologist is prepared to be.
Really need to clarify that M1 part of the initial reports for a start.
If you are prepared to treat aggressively, then you could have many years ahead of you.
Once you get the full report it might be worth bouncing a few ideas around here. The trial might be a good step or it might restrict you from other approaches. Very hard to know at this time.
Meanwhile, you have to come to terms with this news & that takes a wee while to get your head around it all. Try not to overload on Internet info. It's like trying to catch a waterfall at the start.
User
Hi Kev,
I have been following your initial posting I am so sorry that you have received this diagnosis today. We have all been through the feelings and emotions that you are experiencing know. Some on here are more lucky than others ie some are in the cure camp. I hope that you continue to post (If you find it helps you) there is a whole heap of expertise and knowledge on here.
I would whole heartedly echo what Mo has said you need to take some time to adjust and find the emotional support that you will need, either from family , friends or on here or a mixture of all of those. What ever works for you.
There are many men on here with a gleason 10 and hopefully they will come along to give support and advice. Rob has already added about early aggressive treatment. We often say on here that this a rocky road and one thing about this forum is many men have trodden the road before you and are willing to help and guide you through .
There are only a few of us that have young children on here, mine are 10 and 14 and every parent has there own unique way of handling this sort of situation. If I can offer any advise on this subject it would be to wait until you are emotionally ready.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON |
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Thanks everyone, overwhelming support everywhere.
Still a bit unsure about options as posts say there are options but most online advice, does not focus on Gleason 10 with all my stuff, just confused. I can see me just going with whatever and hoping for the best.
Feel free to be specific and point me in the direction of anything that I can put to the quack to dismiss or consider when I see him next Tuesday?
Bless to everyone on this forum who are also suffering and have taken the time to divert their valuable time to me, not that I ever did anything really bad in my life but I don't know if I deserve such kindness.
Kev
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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Hi Kev
Sorry to hear the news but there are plenty of tools in the box. I totally agree with Rob, you have to clear up the confusion with the M1, as you rightly say if the bone scan was clear this should read M0, have you seen this in writing or could you have mistaken the word none for the word one, also did they say how many nodes were affected and where. Take time to digest then once your head clears ask your questions and hit it hard and if you want a second professional opinion then don't worry about upsetting people, go for it. You may be only offered the treatments that are available at your particular hospital so your private healthcare may come in handy to shop around but it is ultimately your decision.
Maybe click on this link as it explains I laymans terms Many aspects and treatments regarding PCA.
http://askdrmyers.wordpress.com
A few of us follow his blogs
Roy
Edited by member 06 Nov 2014 at 22:04
| Reason: Not specified
User
Hi Kev,
Until you have all the scan results & see what is offered it's hard to be specific. Don't want to raise false trails to follow which would just waste time.
You could certainly consider diet changes such as dropping any red meat; egg yolk, dairy produce and oil-cooked foods which many now believe slows progression. If you click on my name you can see some of what I have done to start you off. Which I'm convinced has helped.
Early chemo intervention is one possibility certainly. Our member Si here has shown excellent results with that. Or the Stampede trial might offer the Abiraterone + Enzalutamide hormone treatment option to hit it hard at the start. You just don't know the extent yet so ( as above ) it is pointless covering any other options as yet.
Get your results & consultant's advice. Then come back if you think we can help with choices. That's when further ideas can be discussed.
Sometimes, only treatments are offered which your local health authority agree to pay for. Approaches do vary so as Roy mentions a second opinion may be required. I found my local hospital very good & never went for second opinions. For others it appears to be worthwhile. It just varies it seems.
Get as much detail as you can. Biopsy & scan results ( print offs ). Can be useful in seeing details. Make good notes at meetings. Too easy to forget the odd sentence or remark .
User
Hi Kev,
First just to add my voice of support along with everyone else. My partner was diagnosed Gleason 10 last year with spread pretty well everywhere. If I could go back to last May, this is what I would have done in retrospect. I would have got my partner the skilled second opinion I sought out in April 2014 by which time the damn disease had become resistant to HT probably months before. The disease is so complex you aren't guaranteed to get the same treatment opinion from two different oncologists and our experience were that some were much more on the ball, aware of new treatments, trials and prepared to offer them than others.
The other thing I always say is never to be complacent about the disease though you need to find that difficult path between enjoying your life and coping with the diagnosis and treatment.
Although scans can not be entirely accurate, a scan three months post partner's diagnosis may have shown the disease was spreading despite low PSA and testosterone on the blood tests. Don't ever be afraid to ask or insist on something if you have concerns, sounds awful having to say that but sometimes it pays to shout !
If I'd known then about the CHAARTED Study, about starting men with advanced disease on chemo and HT instead of just HT when the disease is likely to be resistant to HT at some time, in our case much sooner than later, I would have hassled for the chemo and HT. Hindsight is such a wonderful thing ! You never know the outcome of treatments but you need to feel you have the best and most informed options available. Also , there are men on the forum who have done well, even with a high Gleason score, everyone is different.
In terms of emotional support for me, as a partner, I found the PCUK nurses very good, this community was an absolute lifeline. I have since found Macmillan are brilliant. The health service was less able to understand the strains on us as a couple whereas our local palliative care team were fantastic on that front. Well, these are just my observations.
I hope you will find a path for yourself which is the right one and wish you all the best,
Fiona.
User
Just wanted to say I am thinking of you. My husband was diagnosed at the age of 44 just before Christmas almost three years ago and we had lost both his parents to cancer, his Mum only 6 months before his diagnosis. Our children were 13 and 16. We waited until just after Christmas to tell them.
The hormone therapy does take the PSA count down drastically and its good to see those numbers dropping. The toolkit from this site is excellent, as is Macmillan support.
Humour has been the thing that has got us through the dark points. Some people have found this incomprehensible but it has worked for us.
Steph
User
Hi Irun,
the M1 is often linked to bone mets but actually, M denotes any spread to other parts of the body apart from lymph or nearby organs such as bladder so it could be that the M1 in your case refers to these two lumps you said you had on the aorta??? What did the consultant say about that at your appointment?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Thanks again everyone, I now have some good questions to ask my specialist Tuesday, I just hope he is open minded. I am lucky right now to not have any ill effects at all apart from libido wipeout! I am just confused about work as about every hour I get all emotional just by a thought or word or no reason at all and that is not going to be good in the office or with clients, seeing my boss Thursday so see what his view is.
Soo many drug names / tests and the chemo or rt but can't work out what to do still or what to push for but logic to me says zapping in some way has to be worth a go with ht at the same time but how don't know that is better in my case than just ht as whilst I want as long as I can I want as much as possible to be not a burden on my family and to be as happy as I can be, chemo appears to maybe offer a few more months but rubbish feelings/ health along the way, I hate being in this position. Time to cry again.
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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Told the kids yesterday (age 9,14 and16) lots of tears and hugs but had a normal afternoon. The eldest two live with my ex so I went round there when I dropped off last night and told her too, baring in mind we don't usually speak she was very sympathetic and concerned. I am worried about my oldest as she is the most sensitive and I think gets what the big C is.
Had a better day today although still get upset thinking about all the things I probably wont see or do that I had previously expected to.
I am seeing the specialist tomorrow and as at this time the plan is to just put me on hormone injections 3 monthly and see if he can get me on the stampeded trial I will also ask him about:-
Why no chemo
Why am I N1M1, I get the lymph bit but where else is it (they said the seamen sacks however I thought that was the B bit of T3B ?
Why no radiotherapy
Why no surgery to remove lymph and prostate
Why not Olaparib
Why not Xtandi
If anyone knows the responses to the above ie if I am using Dr Google too much tell me equally tell me if there are other things I should be asking now?
Thanks in advance
Kev
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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Fair questions to ask & it shows consultant you are being pro-active. Although usually best not to mention the internet.
Make notes to all answers & don't be afraid to ask " why ".
Get as many bio details as you can. These can be useful later on even if not apparently appropriate now.
For example, I would be asking for a copy of the biopsy report.
Let us know how you get on & Best wishes.
User
Kev
I am on a course all day tomorrow but will be thinking of you and hoping that you are able to get much more information and action. It must have been really hard telling your Children and even your ex wife but now that there are no elephants in the room you may feel a bit more at ease in dealing with all that is to come.
Stay strong, take lots of notes, ask as many questions as you can think of and try and get the name and telephone number of the clinical nurse specialist assigned to your case, if they say there isn't one,ask them to give you one so that you can contact her/him whenever you need to.
xx
Mo
User
Good Luck today Kev
Get the staging sorted, then the choices of treatment become easier.
Best wishes
Si
Don't deny the diagnosis; try to defy the verdict |
User
Hi , sorry I have been away, lots to think about.
Visit to consultant on Tuesday better, he now feels that going on the stampede trial is not the best option as I may not get the new drug and just be left on hormone injections 3 monthly. Says that at my age and fitness (still running 4 days per week x7miles easily).
Said that we should be more proactive and not risk stampede lottery at my age.
So now zoladex 3 monthly (to replace 3x cyproterone acetate per day plus one bicualutamide per day (says that this is kind of like the stampede drug but not quite so good) then 6sessions of chemo , 1 every 3 weeks starting jan, then when that has finished 6 weekly sessions of radiotherapy.
So I feel that we are doing something, I had a CT scan which confirmed that cancer in all my lymphs but not bones and consultant felt a much better prognosis than the oncologist had originally depressed me with.
I feel happier however no Idea if that is a false happiness, so after any opinions that anyone out there has regarding the suggested action?
Thanks in advance
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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Well that's an oncologist on a mission, very proactive response.
I'd be delighted if it were me as he is giving you the best possible chance here.
Good news, if a little daunting.
Good luck
Allison
User
Hi Irun
Sounds like he is going to throw all at from the start, and hit it hard, which is good news. Did you sort out the confusion with the M1?
Good Luck
Roy
User
Kev
to me it sounds like you have landed a really proactive Oncology consultant. Just about everything I have read in the last 6 months has suggested that at your stage of the disease and at your age and as you are strong and in otherwise great shape hitting the cancer with a baseball bat, quickly followed by chemical warfare and then a radioactive bomb is giving it the worst chance of surviving and you by far the best.
I wish you all the very best as you start on your treatent path
xx
Mo
User
Hi Kev,
Sounds good to me. I was concerned about the Stampede lottery which might have given you HT only for example.
Your Onco sounds a good one !
You will still have the heavier duty HT treatments if ever required in the future.
When you say all lymphs, can you ascertain if they mean pelvic ones or more widespread. The R/T treatment suggests such ( locally ) but worth checking. Also, will the prostate be treated with full radiotherapy ?
I'd be very pleased with this pro-active approach which actually is more in line with the longer & better researched breast cancer approaches. Hit it hard and fast.
Should you be happier ? Yes, you should. It will be a bit of a rough time for a while but do-able. And there will be support & tips here to help you along I'm sure.
User
Thanks again everyone, very reassuring. The n1m1 bit is about the cancer being in my groin area lymphs and outside my groin area lymphs as it apparently refers to any cancer spread outside the groin, luckily it's not in my bones though. Feeling good about it, am getting tired easily though, is that the cancer or the hormone drugs?
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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Could well be the HT kicking in + the aftershock of diagnosis which drains you for a wee while. Your body should adjust to the hormone changes but some fatigue can be part of the territory. Try to get sufficient rest time as that does help the body overall.
User
Hi all. My first chemo today.
First a big thank you to all the messages of support, big boost this morning when I was feeling low.
Next my just giving site for my Brighton marathon attempt is now over £3k for PC uk which is great to give something back
Next the consultant said my PSA had gone from 342 in October, 65 November to only 3.6 today, he we pleased too. My testorone was down from 7 to 1 too
Finally the chemo, by some fluke the nurse was the sister of a good friend of my wife's, went really well, no affects so far but am not naieve enough to think that I will be 100% for the next few days.
So a good day all round, can't think it could have gone better.
Thanks again everyone.
Kevin
Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019 |
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Hi Kevin,
Glad you had a good day and everything went well, you also sound very positive which is a very good attribute to have when fighting this disease. Hope everything continues to go well for you, good luck with the rest of your treatment.
Regards,
Gerry
User
Good for you Kevin for being so positive.
Wishing you a good night of restful sleep.
Best Wishes
Sandra
We can't control the winds - but we can adjust our sails |
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Great news mate, hope it continues.
Keep in touch
Si
Don't deny the diagnosis; try to defy the verdict |
User
Great news Kev on all fronts long may that continue.
xx
Mo
User
Glad it went as well as it could Kev
All the best
Bri
User
Good stuff Kev,
glad to hear you are responding well to the treatment to date.
Hopefully chemo will be another tool to push things onwards.
Thinking of you,
Kevin
p.s. Kev / Kevin, one of us is going to have to change our names :)
User
Hi Kevin,
Really pleased everything went well for you today. Great news about your PSA figure too. Hope everything continues to go well for you.
Good luck with your plans for the Brighton Marathon, I'll certainly support you, if I ever get chance to earn any money again. I'm still sulking about having to cancel my Reading Half Marathon entry due to my heart problems.
Anyway, hope the treatment continues to go well.
Steve.