I'm interested in conversations about and I want to talk about

Know exactly what you want?

Show search

Notification

Error

Running and exercise

Email this conversation Print this conversation

User

Posted 15 Jul 2015 at 20:55

Kev

I hope you start a new thread dedicated to your challenge you could call for ideas on what the title should be I will donate "a prize" of 50 quid in the name of the person who comes up with the best idea on your just giving page when you set it up.

User

Posted 16 Jul 2015 at 19:53

Hello all

I'm finding everyone's experiences so helpful so please keep posting on how your training for runs or just fitness are going.

I'm struggling a little at the moment with incessant upset tum and hourly hot flushes plus general tiredness and lack of energy.

Everything but bad tummy can be handled although I'm way behind on my training.

My next run is the GNR half marathon in September and I should be up to 7 mile runs by now but am struggling to get round a 4 miler without getting stomach pains and needing to find a loo.

I've been on HT plus Stampede J drugs now for just 6 months and they do apparently give these side effects. They are working though as my PSA is down from 235 to .06 (further results on Monday!)

My running is so important to me as it gives me something personal to aim for and I'm just getting so worried I'm going to lose it.

It does take my mind off what's going on as well.

Moan over and am going to try and get up early tomorrow for a run (again)

Paul

User

Posted 16 Jul 2015 at 20:36

Paul

I will let one of the serious runners answer your running issues.

The drugs you are taking or being injected with are all quite debilitating in their own right, all three of them used together is bound to be tough, that is the object of the trial though to see if hitting your cancer hard now pays dividends in the future, with chemo still an option further down the line.

Judging by your PSA levels it is doing a great job so far, both Abi and Enza can cause an increase in ALP levels. the effects of alcohol on top are not really proven as there has not been enough data or research there that I know of but it probably goes without saying that alcohol can impair liver and kidney function. These treatments can cause muscle weakness and wastage but if you can keep exercising I am sure that will help reduce that . The enza and Abi can cause tummy upsets. It might be worth talking to your onco about your running and why it is so important to you he may be able to vary your dose to minimise the SEs a bit.

I am sure the runners and running coaches will have some ideas on how you might vary your training to maximum effect.

I wish you well

User

Posted 17 Jul 2015 at 04:40

hi good morning

not sure on how many days you are running but I make it about 6 weeks till you need to taper, target should be at the moment with the way you feel is not how far you can run but time on your feet

is it possable to run loops or figures of eight courses so that you are close to home should you need the loo urgently, and then you may be able to get back out for some more

or is it possable to run morning then early evening

as long as you can get to do a couple of 10milers, then you will manage the GNR, but I would tell anyone if you can not get to 10miles or 100mins on a run then either defer place if possable or do not it

the first 10miler needs to be in about 3 weeks, and 2nd a week later, not in the last two before the GNR

do you own a roadbike so you could try a bit of cross training, or and these are not my fav places to run, is their a gym near by you could use the treadmill then the loo and back onto treadmill

if not able to go back on treadmill then use the x training machines

nidge

run long and prosper

'pooh how do you spell love'

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

User

Posted 20 Jul 2015 at 21:21

Hello
Thanks Nidge for your suggestions

I'm trying to get back into running at least 3 days a week. I've always followed the training plans in "the marathon & half marathon, a training plan" by Graeme Hildich.
I'm a little behind for the GNR but am now up to 4.6 miles although I did have to stop with stomach pain at a local Liberal Club. I was tempted to have a pint but just used the loo.
I do do loop runs but now take note of where the loos are.

Today I've discussed my medication (I'm on Stamped J) with my Onco and she has agreed that I can vary my medication to try and identify which drug is giving me the dicky Tummy and diahorea. I'm now hopeful therefore to be able to pick up the distances with my training runs and certainly get some 10 milers in well before the race.

Paul

PS The only bike I own is a Harley Davidson so that won't help much.

User

Posted 21 Jul 2015 at 10:27

Paul

I can't help with your running I have ony just started after donkeys years and I need all the help I can get myself!

There are two things I wanted to mention though,firstly have you got yourself a radar key and urgent loo badge from PCUK and disability rights uk ? These give you the access to or right to use any loo in a public facility (like bars and restauarants) so could be handy for you. The PCUK website has info on both and how to get them.

With regards to varying your meds, I hope the Onco gave you boundaries and limitations that will not impact on your trial input. I would think Enzalutamide is more likely to be the drug upsetting your tummy. Maybe you can change the time of day you take it initially rather than the actual dose.

I know there is also a school of thought that says Abi taken in the standard dose with food can be just the same as Abi taken in a reduced dose without food. Maybe you could ask about that too?

Good luck with your training

Edited by member 21 Jul 2015 at 17:44 | Reason: Not specified

User

Posted 21 Jul 2015 at 19:56

Originally Posted by: Online Community Member

Paul

I can't help with your running I have ony just started after donkeys years and I need all the help I can get myself!

I know there is also a school of thought that says Abi taken in the standard dose with food can be just the same as Abi taken in a reduced dose without food. Maybe you could ask about that too?

Good luck with your training

No I'd not heard of the radar key and will certainly send off for it. Thank you

Yes the ONCO gave me guidance on how to identify which of the drugs is upsetting my tum. I'm to refer weekly to the research nurse on how things are going.

I asked about which drug she (the ONCO) thought was the cause and she couldn't say.

I take abi (3 tabs) 1 hour before food then I tame 4 tabs enzo. The abi was reduced from 4 tabs to 3 when my ALT went skywards

Why do you say that you think that enzo is affecting my tum?

Thanks for your advice

Paul

User

Posted 21 Jul 2015 at 23:12

Paul

it is just something that happened to Mick, he was only on Enza for 8 days and he had horrendous tummy problems in that time, however he also had a myriad of other things that were going on so he was on so many meds I had to have a spread sheet to manage them all. I can't lie and say it cleared up when he stopped the Enza because at that point he was a very sick man and all urnary and fecal output was controlled by the hospital by using meds of one sort or another.

I know of quite a few men taking Abi alone and none have upset tummys as far as I know. At the moment I only know of you and Alison's OH who are on the combination.

It may just be the combination in your case. I do think the medical team need to give you a course of action that fits in with the trial, it should really be up to them to pinpoint what is causing this SE for you.

Maybe if it is a known SE they should suggest some sort of Imodium type drug to counter balance and give you a better way of dealing with this.

I hope they do

User

Posted 22 Jul 2015 at 16:15

Well I'm into day two off the abi and enza and already my tum feels better.

However I've still got to watch it
Eight days ago I could just manage 2.3 miles before griping tum stopped me.
Three days ago I got to 4.6 miles but with 2 walks with gripey tum
Today I managed 5.7 miles but had to walk twice with gripes and dashed for the loo when I got home.

However I'm thinking things are getting better so it's a 7-8 miler at the weekend and I'm on target for the GNR but I need to speed up. My best half is 8:48 average

Thanks all for the encouragement. It's also amazing what good
Psa results can do for you - yesterday was 0.04 my lowest yet.

Paul

Ps this year I'm running for Yorkshire Cancer Research

User

Posted 22 Jul 2015 at 16:39

Originally Posted by: Online Community Member

Paul

I know of quite a few men taking Abi alone and none have upset tummys as far as I know. At the moment I only know of you and Alison's OH who are on the combination.

Maybe if it is a known SE they should suggest some sort of Imodium type drug to counter balance and give you a better way of dealing with this.

I hope they do

Hi Mo

Thanks again for you advice and thoughts.

you are right of course that the medical team should give me a course of action that fits in with the trial and I'm sure this is what they are doing. All cases as you are aware are reviewed regularly and if the dosage ends up as being outside the guidelines then I guess I have a choice to make as to whether I live with the SEs or pull out of Srampede. I will mention Imodium to the research nurse when I talk to her next - thank you kindly for that suggestion.

I hope you don't think I'm going gung ho into changing my medication it is all at the suggestion of the medical team.

I would add that when my ALT went skyward they told me to stop enza and a I for one week until it started reducing then restarted me on enza and a reduced abi dosage.

My stomach is certainly feeling better after only 2nd day.

I've got to say that in terms of the flexibility in the trial there does seem to be some

I don't know where I read it one person said he was on enza only as the a I was giving him too bad side effects but he kept on the trial.

Thanks Again Mo

User

Posted 23 Jul 2015 at 04:25

good to read that you are feeling better, it will help mentally as well whilst running.

just entered another 10k, wifey not to sure I should be doing it as its 3500 feet above sea level, and worried I may struggle with their being less oxygen, but hey when will I get chance to run this again, and its in support of the local firemans burns unit, its at Sprucemeadows which is one of the big international show jumping arenas, just hope you are not expected to do any of the jumps, watersplash maybe or dressage so best start practising my high knee lifts

nidge

run long and prosper

'pooh how do you spell love'

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

User

Posted 23 Jul 2015 at 19:04

Paul

I hope you do not mind me posting this here but the PM service is kaput and I know you want to get this

radar key ... can be provided free by some local council offices

can be purchased for about a fiver from

https://crm.disabilityrightsuk.org/radar-nks-key

you do not have to be registered disabled but may need to declare it is for personal use due to a medical condition to be VAT exempt.

Hope this post gets seen by you it is so frustrating having to report errors on something so widely used.

User

Posted 10 Aug 2015 at 16:46

I'm now 5 weeks to go to my Great North Run and am am only 1-2 days behind my training plan.

My upset stomach due to abbi + enzalutamide is much improved.
Ive had one week off both tabs and my bad tum improved, then I had one week on abbi only and my tum worsened a little and I was able to run up to 6.5 miles with no trouble. I'm currently nearing the end of my third week which is back to no drugs (except of course the HT jabs) and my tum is much improved. Im due to run an 8/9 miler to keep on schedule.
From Wednesday I'm onto enzalutamide only so might get the bad tum back again.
After that I'm back with the Stampede team to consider dosages.

I'm finding the training very tough and am 1 minute/mile slower than last year.
But got to plod on and finish it I've a lot of sponsors backing me.
Curse this PCa.

This race I'm running for Yorkshire Cancer Research as I deferred my place with them from last year.

Keep faith all you runners and I hope to see at least LynEyre there in Newcastle or en route.. 😀

Paul

User

Posted 10 Aug 2015 at 21:04

So glad you have not given up despite everything my friend. What you are doing is so important for you and others. The sense of achievement when you finish will be overwhelming and as for the time, it really is not important, as Nike says! "Just do it"

Sorry I am too far away to cheer you on by put my thoughts will be with you.

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 11 Aug 2015 at 07:29

Kev
Thanks so much for your encouragement and thoughts.

I guess you're right about the time but it's still so annoying. I've always tried to improve on my times but I guess I've got to be satisfied with just finishing.
I suppose it's just lowering the goalposts and starting another target, I always wanted to do a second London Marathon but in under 5 hours when I got to 70 (which is next January) because then you get automatic entry for the subsequent years as a good for age - that's if I get in.
Who knows stranger things have happened?

anyway best go I've an appointment with my GP Nurse for my next quarterly Prostap jab in the tum.

Paul

User

Posted 11 Aug 2015 at 20:35

Please don't get annoyed with the time. I bet if you wrote to London marathon and said what your situation ips they may give you a place as under 6 hours with cancer is good for any age.

I am in MDS next year, I have a coach who makes me run at less than 127 bpm, that is slow but over 156 miles that will be fine, I have already envisaged the smile on my face when I finish!

Stay strong, remember running is having both feet in the air at some stage, that is an achievement in itself for many able bodied people. I saw an old friend tonight coincidently who was a better rugby player than me in our 20's but has recently self harmed and wants to end his life as he has severe depression, it made me bith sad and envigourated as despite all that I (we ) have , I have never wanted to end it , all I want is to extend it any way I can and running is a way of feeling alive despite all the what ifs.

Good luck in the GNR, you don't need it though.

Kev

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User

Posted 13 Aug 2015 at 19:40

Great work on the running guys. I've ran all through my treatment. The only time I stopped was whilst wearing the Catheter. It was just too painful. I ran a trail marathon 3 days after having my Catheter removed & have continued to run a marathon every 2 to 3 weeks since. 11 since November last year. I've had life issues to cope with along the way & have to work full time too but I do what I can. Pre cancer I was averaging 3.40ish per marathon, now I'm more like 4.20. I've had to battle with my brain & reset my targets. I'm also a stone up. I've lost the competitive fire in my belly but over the moon to be an 'also ran' as opposed to fighting for good for age.

I love the marathon. It has everything for me. Highs, lows. Utter elation, despair all in a few hours. I find them so relaxing though at a 9 minute ish pace & enjoying a chat & the scenery along the way.

My run Britain ranking has dropped from 9.1 to 16 in a year, I've suspended my speed sessions with the club but I'm the happiest plodder going & delighted to still be part of the wonderful running community.

Would be great to meet on a race line somewhere & stick 2 fingers up to cancer together.

Life's a Marathon. Run in peace.

User

Posted 13 Aug 2015 at 21:22

Carlos
It's amazing what you've done are doing. I wish I could feel relaxed at a 10m/mile pace this year.
Last year my best half marathon was at 8:45 pace and 10k at 8:18 but so far this year I'm so far down to 9:24 for the half and 9:29 for the 10k. Mind they were both hilly W.Yorkshire routes.

You are right about the battle with the brain though it's sometimes like "what's the point"

I wish sometimes I'd started running earlier cos I only started seriously when I retired at 63.
Anyway I got the bug and hope to carry on.
Unlike you and many of the other runners I've had not surgery or RT or chemo but only Ht and experimental drugs so who knows what the future will bring.

Great post and so inspiring.

It would be good to all meet up. From my point I usually enter Leeds and GNR half but would like to do London again

Cheers

Paul

User

Posted 19 Sep 2015 at 17:45

I had my Prostate removed in April 2015 at the age of 70. For a number of years before this date I was an almost daily off road runner, running between 3 - 5 miles a day, rain or shine throughout the year.

After my operation my running days just ended. By June I felt OK and returned to my other passion, long distance hiking, camping and backpacking. I tested myself at the beginning of June by hiking Offas Dyke Path, fine except I leaked a bit on some of the steep downhill bits. That depressed me a bit but over the next few weeks my confidence grew, so from mid july to September I hiked across the Pyrenees for over 40 days. I had no further problems with leakage, I was so relieved! A couple of weeks in to the hike and I realised that I now had a hernia. I nearly came home but managed to buy a truss, which worked and was comfortable so I just carried on walking to the finish.

I have been kicking my heels around and about at home now for a couple of weeks and was becoming restless and irritable. On the spur of the moment this morning, whilst my wife was having a lie in, I decided to go for a run in the woods. I tightened up my truss, drove to the woods and gave it a go!

Brilliant! I thought I would really find it really difficult but I ran just over 2 miles and felt really great. I was not out of puff, my legs worked well, my legs and feet were soaked by the early morning dew but I did not care. I just felt like a kid again! I just cannot explain how good it made me feel but I have been in a really good mood all day. I'm going out again tomorrow as well.

User

Posted 19 Sep 2015 at 19:15

Dear gunwharfman
That's brilliant
I read about your hike along the pyrenees - that's some feat. I know the Pyrenees as I have a holiday home on the French south side.
I did a days hike in the Odesa National Park in the Spanish Pyrenees in July which was hard enough for me never mind about 40 days of hiking - wow.
At the moment I prefer running. I've just done my 4th Great North Run and hope to carry on next year after I'm 70 (in January 2016)

I wish you well with your treatment, your hiking and your running.

Paul

Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.