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Stampede Arm J my update

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User
Posted 11 Sep 2016 at 14:20
Hello everybody

I don't post too often but just wondered how everyone else on the Stampede J arm tests are doing.

I started in January 2015 with a Psa of 235. The J arm was Enzalutamide and abiraterone which I took besides the Prostap.

As mentioned before I dropped the abiraterone after it was identified as giving me extreme fatigue and very bad stomachs.

Since then I've just plodded along taking my medication with a Psa in the region .04 to .08. Last weeks blood test gave .04.

I've lost most of my body hair, I have small boobs, I do get more fatigued, my legs feel heavier, of course I still get the hot flushes every hour or so and I get a bit more fatigued.

I used to run half marathons but am now down to jogging for short distances which is quite saddening me but I have taken up hiking to compensate.

Whether it's been brought on by the medication I've now developed high cholesterol and may have angina and so am getting some chest pains.

I've not particularly had any emotional days but then I do try to get on with life and not worry too much what's happens next.

But as every 3 months passes and I wait for my next result I get more apprehensive - it's like approaching a tunnel and wondering when you enter the darkness.

Anyway sorry I'm rambling a bit .

I wondered how all you other Stampeders are getting on, hopefully well.

Paul

Edited by member 11 Sep 2016 at 23:01  | Reason: Not specified

User
Posted 12 Jun 2019 at 19:09

Well another 6 months gone and I have to say all is well or improving.
I'm still on the Stampede J Trial and over the 4.5 years the enzalutamide & Prostap have controlled my cancer in the region of .05. My next visit to my Onco is in 3 weeks so fingers crossed.
Is anyone else still on this trial since it appears that some trial results are now filtering out.

Other issues I've had recently are also improving.
I've no further problems with my ticker although my bp has gone up a bit.
The other big issue was the onset of Rhumatoid Artritis. The tabs for this are certainly working as I've now only got significant pain and swelling in my fingers.
So I'm building up on the jogging/running and motor biking which is great.
You never know I might try another 10K or more.

I know I've been very lucky so far and I'm not sure how long it will go on but I'm enjoying the days as they come.

Paul

Edited by member 12 Jun 2019 at 19:09  | Reason: Not specified

User
Posted 30 Aug 2020 at 12:34
ive just had my August consultation with my new Oncologist by telephone.

It's strange and the first time that I started the consultation without a copy of my bloods so I was a bit more apprehensive.

Anyway bottom line is that my cancer still seems to be under control with psa at .03 and all the bloods are in spec. I'm now 68 months since dx.

I have also had a testosterone check for the first time. This came out at .5 but I'm not quite sure what this means.

I must say I'm not as worried as I used to be and just get on with life.

After a bad 6 months with my RA I'm glad to say at the moment I'm feeling pretty well although I can still sleep on a plank but at least I can hike again.

IRUN is right about keeping fit and I'm recently back to hiking 6-8 miles and it's really toning me up.

Still trying to keep up with the organic and Mediterranean diets which I am positive are helping.

I'm just hoping!

Paul

User
Posted 20 Sep 2016 at 15:38

Hi Paul

I'm also on the stampede trial arm J, diagnosed April 2015 T3N1M1 Gleason 9, started trial June 2015 and so far so good PSA currently <0.05 (all stats on my profile) . I've got all the usual hormone treatment side effects as you mention the main one being tiredness, some days worse than others, but I've got a fairly active life with family and work so try not to let it get in the way. I know what you mean though about waiting for the PSA results.

Good to see yours and Glyns PSA are also undetectable and long may it continue

Ian

User
Posted 04 Dec 2018 at 10:43
Virtual man hug from me.

Ian

Ido4

User
Posted 21 Jul 2019 at 21:33
Well after 4 blood tests for my GP, my RA nurse and my oncologist I can report all is well on all my bloods stats.

.

Re my PCa things are ok and my psa remains as last quarter at .03. No additional side effects

Re my Rumatoid Arthritis the CRP measure of inflammation is in spec and pain is now only primarily in fingers.

Re my Cardio issues the blood platelets are down and back into spec which is good. BP is fine.

I seem to be borderline on being Diabetic so that something to watch.

So I am now starting my 55th month on the STAMPEDE trial and all is ok.

The various hiccups have been due to other issues like angina and Rhumatoid Arthritis.

In terms of medication I'm still on 4 tabs enzalutamide plus a 12 weekly jab of Prostap.

For the Cardio just aspirin and for the RA I have just changed from taking Methatrexate by tablets to Metoject (self injection) plus Hydroxychloroquine by tablets.

I've also just had my last steroid tablet after a lengthy dose reduction.

I'm not kidding my self (I think) that this will go on forever but day by day I'm comfortable and not over duly worrying about it..

I hope this drug works for many others and will soon become an approved starting prescription.

Paul

User
Posted 09 Aug 2019 at 17:17

Just a quick update (sorry to hijack your thread Paul!) ,Gary’s latest PSA still undetectable and also he’s had the bowel screening test results which thankfully are all clear . Still on  arm j of stampede with 6 weekly bloods and 12 weekly onco apps .Gary still working full time ,nearly 4 yrs since diagnosis.
One thing we’ve taken away from this is when you are offered a screening of any kind ,take it as you can never go back in time .
My dads just been diagnosed with oesophagas cancer ,so feeling a bit cr*p at the moment .
Debby

Edited by member 10 Aug 2019 at 06:52  | Reason: updated post

User
Posted 28 Jun 2020 at 13:46
Hello

Isn't Time flying, especially with the lockdown.

I thought I'd give an update on my trials and hopefully give some extra hope for folk using the enzalutamide.

My latest blood tests in May revealed a psa of .06 and for the first time all my blood stats were in specification.

I am still on the Stampede Trial J taking Prostap and Enzalutamide and am feeling pretty reasonable.

I would say that my muscles have wasted a bit and they ache when I do anything slightly more exerting than normal and I feel wearier but generally I'm ok and still walk and ride my motorcycle.

I also contracted Rhumatoid Arthritis about a year ago so sometimes I think most of my aches and fatigue are down to that.

It's now 5yrs6months since I was diagnosed with PCa with a psa of 199 (rising to 235) by the time I started on the Stampede Trial.

I hope things carry on for much longer and that this drug is successful for others too.

All the best to everyone.

Paul

User
Posted 11 Sep 2016 at 19:59

Hi Paul, not a stampeder but just wanted to say pleased that the latest result was .04.

The side effects are a B***Dy nuisance eh! but better than the alternative and I'm sure your get on with life attitude must help you a lot

****

We can't control the winds - but we can adjust our sails
User
Posted 11 Sep 2016 at 20:08

Stampede or not Paul , you are describing a lot of the side-effects , symptoms and changes ( both physical and mental ) that we are all going through at various stages of the disease. I've always enjoyed reading your posts , and the thing that strikes me most is your loss of energy for running which you obviously loved. You have my heart-felt sympathy for that. Stay strong brother, and I reckon the hiking will take up the slack
Chris

User
Posted 11 Sep 2016 at 20:25
User
Posted 11 Sep 2016 at 23:12

Thank you everyone for your comments.
It does get tricky sometimes to just get on with things but I keep going.
Interesting report on statins, I hope starting them will prolong the control of the PCa longer again.
I'm also on aspirin now for blood thinning which also is reported to help slow the PCa.
Let's hope the labs keep finding more solutions.

Paul

User
Posted 15 Sep 2016 at 20:52
Hi Healey

Just joined - my first post.

Am also on Arm J plus Zoladex injection every three months.

I was diagnosed in March 2015. PSA 88 Gleason score 4+3=7. Spread to one lymph node in pelvis. 68 years old. Like you have had all the side effects. Although the hot flushes are much reduced. Still working part time which I think helps me cope. PSA has been undetectable for 9 months. For how long who knows - I just try and be positive.

Like you I get fatigue and sometimes could sleep for England lol.

All I can say to you is try to be positive and try to keep active. The hiking in my view is good idea.

Best wishes my friend.

User
Posted 16 Jun 2017 at 21:23
Hi Healey

Sorry have not replied to your message but have been on holiday. Cruise in med. and week in Corfu. Had great time although quite tiring. Tried to send this private but site would not let me!!!!. Am still going strong. PSA undetectable for last 18 months. Still on HT - Zoladex every 3 months. Still on Enzo. and Abira. Clinic every four weeks - bloods ok. Have asked clinic nurse about scans etc and told nothing will be done until PSA goes up . Some side effects mainly tiredness with occasional hot flushes. It is obvious from what you are saying that treatment varies from hospital to hospital. For example I have not seen my Onco. since I was diagnosed over two years ago. ,!!! Still working part time so overall life is pretty good.

User
Posted 16 Jun 2017 at 23:05

Hi glad your getting on well ,my OH is also on arm j ,he also had early chemo after being diagnosed Dec / Jan last year ,
It's been a year since on trial still managing the whole dosage but as with others say main side effects are fatigue which is frustrating as Gary was such a strong manual labourer building marinas and driving piles ,but now has to take a back seat and supervise which he struggles with as he's always been a worker .im so proud of how he has coped and is coping even though our life has Changed we will grow stronger together as I'm sure all you will .
Great news about abi trial hopefully abi/Enzo trial will give equally if not better results and will be worth all the side effects .garys PSA has been 0.01 for a year now ,next onco visit on Tuesday .
Best wishes to all on this journey
Debby

User
Posted 19 Jun 2017 at 21:47
Hi Merrivale

The only thing I can offer in respect of advice is for you to support your OH as best you can. It is great that he is continuing to work. Although I am a lot older I still work 2/3 days a week. This arm J can knock the stuffing out of you but the side effects will probably get better- they have for me. Saw my clinic nurse today - PSA still undetectable. I wish you both all the best for the future.

User
Posted 26 Jun 2017 at 13:23
Hi Debby

Great news with your Hubs continuing low psa.

I suppose not having the choice of IHT doesn't really matter as long as the control continues.

Sometimes a choice makes it a bit harder.

Yes I've fired off a load of questions to both the PCaUK nurse and to my Onco about the options of stopping Enzalutamide and of going on IHT. .

I don't particularly want to stop the regular full monitoring now that the Trial has finished but don't as yet know whether that will be an option.

I'm just waiting for my Onco to reply then I'll peruse some more.

I've still lots of time to ponder as my next Onco appointment is not till August.

All the best to you both

Paul

User
Posted 15 Aug 2017 at 20:12

Great news ,I've been looking out for your update . the extra monitoring is reassuring ,gary had his onco app today and alls well still . Did you have to ask for a scan update or was it part of the trial ending? As we've been told only if PSA rises or any other problems .
Keep us updated
Best wishes
Debby

User
Posted 15 Aug 2017 at 20:18
The PSA number is really good and the fact your scans reinforce this even better. Long may it continue.

Ido4

User
Posted 15 Aug 2017 at 22:12
Hi Healey good to here that after 30 months on the trial things are stable. I have asked for scans but told that these will only be given if things change. My PSA has been unditectable for 30 months but at my meeting with nurse on Monday my PSA had risen to 0.085 which came as a bit of a shock. She said not to worry as the PSA will fluctuate and the MDT team were not concerned - but I was !!! The nurse questioned me if I had done anything different prior to my blood test . I told her that 12 hours before my blood test I had been on my exercise bike for about 20 minutes. She then informed me that it is possible that this may have had an influence on my increased PSA reading. Has anyone else heard or read that this is possible. I will not be riding the bike before my next blood test in 4 weeks time so will see what my PSA reading is then.
User
Posted 15 Aug 2017 at 23:03

Yes it is common knowledge that cycling, a hard gym session and orgasm can all cause a small temporary rise in PSA.

However, a) 0.085 is still officially undetectable and b) the ultra sensitive test has been brought into question and an increasing number of hospitals have stopped testing to 2 or 3 decimal places so I don't think you should be concerned yet.

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

User
Posted 16 Aug 2017 at 07:06

Hi Glyn
Yes I agree with what Lyn says
My own PSA has varied between .04 and .07. Strangely my .07 readings also had a high bone phosphate reading which went back into spec later.
I don't worry about such variations.
Paul

User
Posted 16 Aug 2017 at 16:34

Hi Paul ,garys doing really well with treatment ,mainly just fatigue .he's still getting up at 6am every morning to go to work .
Since having our two gorgeous grandsons Gary seems to have got renewed energy . I think I'm with you as in pushing for a scan update even just for my mental wellbeing ! Gary never asks questions unlike me .
I've booked two holidays ,one in October sailing the med which Gary will have to relax on and a transpacific cruise in April which I've had many a sleepless nights over as have I booked to far ahead . Are your bloods only taken every 3/4 months because of the trial ending ?
Keep us updated on your progress
Best wishes
Debby

User
Posted 16 Aug 2017 at 22:24

Thanks for that info ,our trip is Tokyo to Vancouver stopping at Russia ,not looking forward to the flights but Heyho will be worth it.
Best wishes
Debby

Edited by member 17 Aug 2017 at 05:42  | Reason: Not specified

User
Posted 17 Aug 2017 at 16:57

Hi Glyn thankyou for info ,at the moment I'm with nationwide flex plus account which is £10 a month ,when I told them garys info they charged us just £129 extra a year world wide .but if it gets to expensive then I will certainly give it a try .
Hope all of your treatment is going well .
Enjoy your next holiday
Best wishes
Debby

User
Posted 18 Aug 2017 at 06:21

My wife has travel insurance as part of her current account which also covers me.
We've kept them informed of all my conditions.
We've just added angina and the cost has just gone up to £140 per year.

User
Posted 01 Mar 2018 at 09:45

Congratulations.

Thank you for the update Paul. 

They are always good for giving people a lift

We can't control the winds - but we can adjust our sails
User
Posted 01 Mar 2018 at 09:57

Great news Paul.

User
Posted 01 Mar 2018 at 13:21
That’s very encouraging news Paul. Best wishes, Ian.

Ido4

User
Posted 01 Mar 2018 at 18:27
Hiya Paul,

This is really good news mate. I'd certainly greet 6 monthly appointments with positivity, especially when you can put apprehension on hold and relax in that knowledge. Plus....springtime will soon be upon us to make a lot of us feel better. Take care.

Paul

User
Posted 01 Mar 2018 at 20:31
That's wonderful news, Paul. You deserve it.
User
Posted 01 Mar 2018 at 23:30
Great news Paul. Am also on stampede trial arm J. Now 36 months on HT Zoladex, enzalutimide and abiraterone. PSA reading still undetectable. There are obviously big differences area to area as I have not seen my onco since I was diagnosed. Also I have blood test every 4 weeks and attend clinic every 4 weeks and complete a “lifestyle” questionnaire every 3 months. Like Debby I don’t think I would be happy with 6 monthly appts. You would think as this is a clinical trial that all hospitals would follow the same procedures but it is obvious from the posts on this site that they don’t.

User
Posted 02 Mar 2018 at 11:46

Gary currently has 4 weekly blood tests with onco every 8 ,and as with Glyn fills in a lifestyle questionnaire,as well as extra bloods and mouth swabs going to the trial for research (DNA I think) .he had been told that he will eventually be on 3 monthly then 6 monthly onco apps but not really sure if the blood will continue to be taken every 4 .its a couple of months till the 2 year trial milestone so maybe that’s when it will change .
Best wishes to all on trial and it’s great to hear follow ups
Debby

User
Posted 02 Mar 2018 at 20:32

Gary still working full time and suffers with fatigue but finds that working does help keep him going ,as for flushes he still gets them daily but strangely after I moaned about having to change the bedding more often he started to wear PJ’s and has found they’ve stopped at night !! Only gets really hot feet .a small price to pay for the results he’s getting at the moment ,long may it continue
Debby

User
Posted 02 Mar 2018 at 21:19
Originally Posted by: Online Community Member

Gary still working full time and suffers with fatigue but finds that working does help keep him going ,as for flushes he still gets them daily but strangely after I moaned about having to change the bedding more often he started to wear PJ’s and has found they’ve stopped at night !! Only gets really hot feet .a small price to pay for the results he’s getting at the moment ,long may it continue
Debby

That's odd Debby I get really cold feet

User
Posted 02 Mar 2018 at 21:22

My acupuncturist told me that he also works for the NHS giving acupuncture to men on HT for their hot flushes. He works out of the regional urology / oncology department. I might send J along because he spoils all my lovely bedding. The odd thing is that he stopped HT 5 years ago but the flushes have never left him.

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

User
Posted 03 Dec 2018 at 21:27
Big virtual hug Paul

Fingers crossed everything settles down

🤗

User
Posted 03 Dec 2018 at 22:20
Man - hug from me ! My leg pain from thigh to ankle on both legs is blamed on arthritis and I’m only 51. I’m convinced it’s something more sinister but tests say it isn’t.
User
Posted 03 Dec 2018 at 22:41

Big hug from me Paul. Keep your chin up and try and be positive. You have had various tests which are all clear. The problem is if you are like me any aches or pains you immediately blame them either on the drugs or the Pca. The problem is the mind is very good at pointing you in the wrong direction. Perhaps you do have rheumatics. Is it treatable.? 

User
Posted 04 Dec 2018 at 06:08
Just read your profile Paul. Wow, you're an inspiration to us all. Well done.
User
Posted 04 Dec 2018 at 08:30
Sending a big hug and best wishes to you ,

Take care

Debby (x)

User
Posted 12 Jun 2019 at 19:27
Hi Paul ,great to hear your continued good results .as you know Gary is also on the stampede arm j but he’s been fortunate to continue both Abi and Enzo ,there’s been lots of snippets in the press about the good results .im not sure if the data for arm j is maybe due later in the year .

Gary had early chemo which saw his PSA go down to <0.01 and it has continued to be that 3 years on .

It will be coming up to 4 yrs diagnosis later this year and we are eternally grateful for the stampede trial.If any one is in any doubt about going on a trial I would say go for it as you can always pull out if it’s not working .

Gary’s still working full time in a manual job .His strength is nowhere near what it used to be and fatigue still a major down side .

Good luck to you and keep us updated on any news .

Best wishes

Debby

User
Posted 13 Jun 2019 at 18:49

Hi Paul

Glad that all going well for you. I have been on arm J for 4 years. Zoladex injection every 12 weeks. Am also on Enzo and Abi and pernisolode on the trial arm J.  PSA has been undetectable for 3.5 years. Have to attend clinic every four weeks for lifestyle and blood test results. Completion of lifestyle forms fine and blood test results have been excellent.

Until recently things have been going along nicely but 2 weeks ago my blood pressure went through the roof for the second time - 194 and 236. Suspended from trial for 3 weeks last year but then it was ok. Have been suspended again and prescribed blood pressure tablets. Going back Monday 17 June to see if blood pressure has stabilised so that I can resume the trial -  fingers crossed. 

Otherwise all is pretty good. Am 70 years old and still work work part time. Get bit of fatigue . Biggest problem is weight gain - 2.5 stone and cannot shift it no matter how hard I try. All the best to everybody.

 

 

User
Posted 13 Jun 2019 at 20:35

My primary treatment was rt and 3 yrs zoladex, rt completed Dec 2016 and last Zoladex implant June 2018. My arm J plan was 2 yrs intrauterine, enzalutimide & prednisolone which I completed Jan 17 or thereabouts (had a short break to sort bp out). Can't say exactly what treatment is more responsible for what, prob a bit of everything but still tired, still trying to get some muscle back, weight still too much currently 80kg when less than 70kg before treatment, getting bits of exercise in, achilles tendons sore (due to prednisolone) trying physio for that. However, I'm sure things will improve in time. Peter.

Should add that still get hot flushes as well but not as bad, have trouble sleeping (tried sleeping tablets, melatonin & acupuncture, the acupuncture seems to help and sometimes have an unavoidable emotional day. However, psa has remained undetectable practically throughout I think.

Edited by member 14 Jun 2019 at 18:51  | Reason: Added I fo

User
Posted 22 Jul 2019 at 10:10

 

Hello Debbi

Thank you for your good wishes.

I've also had periods of bloating and put on weight by three quarters of a stone about 6-9 months ago.

Im pretty sure it was down to my diet in my case. I think my system has got used to fish and salad so if I have a curry or full english I get an upset tum. It can also happen when I start another medication (not necessarily for PCa).

When I first started my medications I also took abiraterone but this gave me some terrible bloating and stomach problems. It stopped when I stopped taking the Abbi.

I do hope all goes well with Gary

 

Paul

Edited by member 22 Jul 2019 at 10:12  | Reason: Not specified

User
Posted 23 Jul 2019 at 21:11

Paul

I have same problem as you in that my wife is always telling me to slow up . I still work as a driver - you name the car I will have driven it. I work part time - 2/3 days a week. The problem is although I will be 71 in a few weeks I enjoy the job and the company of my fellow work mates.  I also enjoy gardening and that can be quite tiring especially as the medication gives me fatigue. My view is I don’t know how long I will be around so I am making the most of it. We holiday either abroad or in this country 4/5 times a year plus many days out.

In respect of your query in respect of the 5 year bit I have discussed a couple of things with clinic staff. One being can I get a MRI scan to see how the PCa is doing and being told no scans will be done in the foreseeable future. Secondly taking a “holiday” from treatment is in their view not an option and as far as they are concerned I will be on my present treatment including the trial until such time as it becomes ineffective. 

I am presently sitting in the garden with my wife enjoying a alcoholic drink as it is a little cooler as it is now past 9pm. 

All the best to you and your wife. As my wife keeps telling me be positive and enjoy life.

Glyn

User
Posted 24 Jul 2019 at 18:13
I was on stampede arm j for a planned 2 yrs which ended Jan 2018 approx with a brief break with high bp caused by abiraterone I understand. Main treatment rt completed Dec 2016 & 3 yrs Zoladex completed Jun 18. An earlier comment about not losing the gained weight isn't good is it. I put on a fair bit of weight and again being petty that was/is pretty depressing for me. My oncologist did say that the weight would go but will take a while. I've always had a good diet and exercised & still exercise and just about to pick the exercise up a bit as the side effects, I did seem to get them all, wear off so really hoping weight will go especially as it all seems to be around my stomach. So here's to losing the extra kilos.

Peter

User
Posted 03 Aug 2019 at 20:35

 Hi Debby

Just wanted to say thanks! I was diagnosed 2 years ago, had a (very) radical prostatectomy but a subsequent PMSA scan showed it had spread in a similar way to Gary’s - hence my interest in following your posts on Stampede J. I I had doxetaxel and am now on 6 monthly  Decapeptyl. My PSA has remained at < 0.05.  And I hope that continues but it is reassuring that once my PSA starts to rise there are other treatments which are being trialled on Stampede! Best Alan (Nevis)

 

User
Posted 05 Aug 2019 at 20:46

Hi Paul

 

Just wanted to say a big thank you for your informative and descriptive posts which help give me hope.  I am fairly new to the website and am not on Stampede but have been in this same Metastatic Cancer Club (MCC?) for 2 years!

Best

Alan

User
Posted 10 Aug 2019 at 10:19

Hi Debby

I have been looking around the forum for a few weeks now and have now joined (though I don't really want to). Your story is of interest as its a positive one with your husband doing well and still working etc. Long may it continue.

I am sorry to hear about your dad though.

Take care

M x

 

 

 

Mrs MAS

User
Posted 04 Feb 2020 at 21:12
Great news Paul ,Gary is still on trial and working hard .The main side effect is the fatigue which he struggles with and weight gain .PSA is still undetectable so we can’t ask any more than that . Unfortunately today he saw a dermatologist and has 3 cancerous lesions on his face which we’re hoping will be sorted by cutting them out .

Keep posting as its great to hear from fellow trial members .

Best wishes

Debby

User
Posted 05 Feb 2020 at 16:01

High Debby

I'm  so glad to hear that Gary is still doing well on the trial and am hopeful that the face lesions are but a minor issue.

i keep thinking of you both and drawing strength from knowing another is progressing well.

Paul

User
Posted 28 Jun 2020 at 16:48
Great news
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 28 Jun 2020 at 17:24
Good to hear from you Healey , as you know Gary’s on the same arm j and is equally doing well .He’s been on the trial 4 years now And still working (apart from lockdown) . It would be nice to hear from any other arm j participants and also to see any data that has come out of it .

Best wishes Debby

User
Posted 28 Jun 2020 at 20:36

Hi Debby

I'm so glad to hear that Gary is still doing well and take hope from hisprogress.

I also suffer the fatigue and hot flushes but seem little compared to other possibilities.

I too would like to hear some results from the Trial but we might have to wait a little longer.

keep in touch

 

paul

User
Posted 28 Jun 2020 at 20:46

Hi Irun

i remember my first post when I had just been diagnosed and your reply. At the time I was concerned about being able to continue running. I've been so heartened about your progress and physical feats. I'm afraid an onset of Angina and RA put paid to my competitive running but I still try to keep fit.

Best of luck with you future runs and treks and thanksso much for your thoughts.

 

paul

User
Posted 28 Jun 2020 at 22:24

Good news Paul.

Ido4

User
Posted 30 Aug 2020 at 15:34
Nice news Paul and a great mind set. Sadly we have all missed holidays this year. I’ve had 2 cruises cancelled and I fear it was my last chance saloon insurance wise. Keep keeping fit !
User
Posted 30 Aug 2020 at 15:55

Really good news Paul. Keep hiking!

Ido4

User
Posted 30 Aug 2020 at 16:31

Hi Debby

It's great to hear that Gary is doing so well

Please give him my best Regards

I'd love to do the Rocky Mountaineer. And itll still be there for you next year. So something to look forward to.

I cant wait for the restrictions to ease but were fairly flexible here in Holmfirth

Paulx

 

User
Posted 30 Aug 2020 at 20:27

Great news for you , Paul. I am so pleased for you and for me!  Your situation gives me hope - I am also 74 but ‘only’ 3 years from dx and also did a 5 mile hike today in 32 degrees and 90% humidity - I am currently living in the Caribbean. Not quite got to the stage when my 3 monthly psa test is just a hiccup rather than an anxiety riven hurdle just yet. But am hopeful I will become more accepting knowing that there are more treatment options available. 

User
Posted 31 Aug 2020 at 07:56

Fab news , glad numbers are low and that you are getting out hiking, it’s not just the physical side but the mental benefits too. You are proving that it’s posdible to still do exercise but we both know it takes effort and persistence.  Overseas holidays and races are out so it is about finding what you can do here, my next challenge is to run for 24 hours non stop ( for PCUK of course).  Keep going , you have brought a smile to my face again, thank you for posting.

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 31 Aug 2020 at 19:33

Hello Irun

its good to hear from you and to hear you are still achieving the almost impossible. I'm in awe as to what you achieve and reading them always helps me push that little bit more.

Thanks so much for your kind words and let us know of how you manage to run for 24 hours.

 

paul

User
Posted 31 Aug 2020 at 20:22
Great results Healey - keep on doing whatever you are doing 👍
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Sep 2020 at 06:23

Hi Paul, 

Great news that your results are going really well. 

Long may that continue. 

Steve 

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User
Posted 11 Sep 2016 at 19:59

Hi Paul, not a stampeder but just wanted to say pleased that the latest result was .04.

The side effects are a B***Dy nuisance eh! but better than the alternative and I'm sure your get on with life attitude must help you a lot

****

We can't control the winds - but we can adjust our sails
User
Posted 11 Sep 2016 at 20:08

Stampede or not Paul , you are describing a lot of the side-effects , symptoms and changes ( both physical and mental ) that we are all going through at various stages of the disease. I've always enjoyed reading your posts , and the thing that strikes me most is your loss of energy for running which you obviously loved. You have my heart-felt sympathy for that. Stay strong brother, and I reckon the hiking will take up the slack
Chris

User
Posted 11 Sep 2016 at 20:25
User
Posted 11 Sep 2016 at 23:12

Thank you everyone for your comments.
It does get tricky sometimes to just get on with things but I keep going.
Interesting report on statins, I hope starting them will prolong the control of the PCa longer again.
I'm also on aspirin now for blood thinning which also is reported to help slow the PCa.
Let's hope the labs keep finding more solutions.

Paul

User
Posted 15 Sep 2016 at 20:52
Hi Healey

Just joined - my first post.

Am also on Arm J plus Zoladex injection every three months.

I was diagnosed in March 2015. PSA 88 Gleason score 4+3=7. Spread to one lymph node in pelvis. 68 years old. Like you have had all the side effects. Although the hot flushes are much reduced. Still working part time which I think helps me cope. PSA has been undetectable for 9 months. For how long who knows - I just try and be positive.

Like you I get fatigue and sometimes could sleep for England lol.

All I can say to you is try to be positive and try to keep active. The hiking in my view is good idea.

Best wishes my friend.

User
Posted 15 Sep 2016 at 23:54

Thanks Glyn and my very best wishes to you.

User
Posted 20 Sep 2016 at 15:38

Hi Paul

I'm also on the stampede trial arm J, diagnosed April 2015 T3N1M1 Gleason 9, started trial June 2015 and so far so good PSA currently <0.05 (all stats on my profile) . I've got all the usual hormone treatment side effects as you mention the main one being tiredness, some days worse than others, but I've got a fairly active life with family and work so try not to let it get in the way. I know what you mean though about waiting for the PSA results.

Good to see yours and Glyns PSA are also undetectable and long may it continue

Ian

User
Posted 16 Jun 2017 at 21:23
Hi Healey

Sorry have not replied to your message but have been on holiday. Cruise in med. and week in Corfu. Had great time although quite tiring. Tried to send this private but site would not let me!!!!. Am still going strong. PSA undetectable for last 18 months. Still on HT - Zoladex every 3 months. Still on Enzo. and Abira. Clinic every four weeks - bloods ok. Have asked clinic nurse about scans etc and told nothing will be done until PSA goes up . Some side effects mainly tiredness with occasional hot flushes. It is obvious from what you are saying that treatment varies from hospital to hospital. For example I have not seen my Onco. since I was diagnosed over two years ago. ,!!! Still working part time so overall life is pretty good.

User
Posted 16 Jun 2017 at 23:05

Hi glad your getting on well ,my OH is also on arm j ,he also had early chemo after being diagnosed Dec / Jan last year ,
It's been a year since on trial still managing the whole dosage but as with others say main side effects are fatigue which is frustrating as Gary was such a strong manual labourer building marinas and driving piles ,but now has to take a back seat and supervise which he struggles with as he's always been a worker .im so proud of how he has coped and is coping even though our life has Changed we will grow stronger together as I'm sure all you will .
Great news about abi trial hopefully abi/Enzo trial will give equally if not better results and will be worth all the side effects .garys PSA has been 0.01 for a year now ,next onco visit on Tuesday .
Best wishes to all on this journey
Debby

User
Posted 19 Jun 2017 at 21:47
Hi Merrivale

The only thing I can offer in respect of advice is for you to support your OH as best you can. It is great that he is continuing to work. Although I am a lot older I still work 2/3 days a week. This arm J can knock the stuffing out of you but the side effects will probably get better- they have for me. Saw my clinic nurse today - PSA still undetectable. I wish you both all the best for the future.

User
Posted 23 Jun 2017 at 14:47
Hi Debby

How did your appointment with the onco go.

I'm pondering now on whether to give all the Medes a rest and restart the HT as and when psa gets up to 10- I'm still pondering though.

Hope everything is ok with you OH.

Paul

User
Posted 23 Jun 2017 at 17:26

Hi Paul all good with the PSA level still at 0.01 .
Mentioned your case to onco but was advised Gary wouldn't be given that option ,only in the circumstances of toxicity ,failing or he didn't want to continue with trial .so it looks like garys on them for good as I can't see him giving up the trial willingly as all the time it's keeping it under control he'll stick with it .
I must say it's a hard call for you as it would be great to get some normality back but I'd be so worried that once it's unleashed it couldn't be tamed again . I really wish you well in your decision ,have you had any feed back from onco on which direction to take ?
Best wishes Debby

User
Posted 26 Jun 2017 at 13:23
Hi Debby

Great news with your Hubs continuing low psa.

I suppose not having the choice of IHT doesn't really matter as long as the control continues.

Sometimes a choice makes it a bit harder.

Yes I've fired off a load of questions to both the PCaUK nurse and to my Onco about the options of stopping Enzalutamide and of going on IHT. .

I don't particularly want to stop the regular full monitoring now that the Trial has finished but don't as yet know whether that will be an option.

I'm just waiting for my Onco to reply then I'll peruse some more.

I've still lots of time to ponder as my next Onco appointment is not till August.

All the best to you both

Paul

User
Posted 15 Aug 2017 at 19:53

Just had another Onco meeting and all is still going well on the Stampede Trial.
I'm now 30 months into the Trial and my psa is still down at .05 with all other blood stats ok.

None of my lesions are now showing on the bone scans and CT scans and my prostate is only slightly enlarged. I don't kid myself however that the Cancer has gone, it's just resting.

I did have an option of going onto IHT but I would lose the Enza so I have decided to remain on the current medications (Prostap and Enzalutamide).

I am remaining on the Trial even though the official trial is only over 2 years.
So I will still be monitored and have full blood tests every 3-4 months.
Hopefully the control will continue.

Interestingly I asked when the results of the Enza Trial will be reported but was told it's going to be a long time but she expects the same results as the recently reported Abiraterone Trials.

I hope this report give some people hope and would be very interested to know how others are getting on.

User
Posted 15 Aug 2017 at 20:12

Great news ,I've been looking out for your update . the extra monitoring is reassuring ,gary had his onco app today and alls well still . Did you have to ask for a scan update or was it part of the trial ending? As we've been told only if PSA rises or any other problems .
Keep us updated
Best wishes
Debby

User
Posted 15 Aug 2017 at 20:18
The PSA number is really good and the fact your scans reinforce this even better. Long may it continue.

Ido4

User
Posted 15 Aug 2017 at 21:27
Hi Debby

Great news about Gary, long may it continue. How's he feeling.

Re the ct and bone scans I pestered and pestered until at an appointment they agreed. They did say that I was very worried about things and that they would do the scans to placate me. I must say that I did get a bit emotional at the appointment.

I do keep saying that I'm not "worried" only inquisitive. For the same reasons I always ask for all my blood results.

One could argue that doing the scans was a bit pointless and that my Onco was right but for me it certainly helped.

All the best

Paul

User
Posted 15 Aug 2017 at 22:12
Hi Healey good to here that after 30 months on the trial things are stable. I have asked for scans but told that these will only be given if things change. My PSA has been unditectable for 30 months but at my meeting with nurse on Monday my PSA had risen to 0.085 which came as a bit of a shock. She said not to worry as the PSA will fluctuate and the MDT team were not concerned - but I was !!! The nurse questioned me if I had done anything different prior to my blood test . I told her that 12 hours before my blood test I had been on my exercise bike for about 20 minutes. She then informed me that it is possible that this may have had an influence on my increased PSA reading. Has anyone else heard or read that this is possible. I will not be riding the bike before my next blood test in 4 weeks time so will see what my PSA reading is then.
User
Posted 15 Aug 2017 at 23:03

Yes it is common knowledge that cycling, a hard gym session and orgasm can all cause a small temporary rise in PSA.

However, a) 0.085 is still officially undetectable and b) the ultra sensitive test has been brought into question and an increasing number of hospitals have stopped testing to 2 or 3 decimal places so I don't think you should be concerned yet.

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

User
Posted 16 Aug 2017 at 07:06

Hi Glyn
Yes I agree with what Lyn says
My own PSA has varied between .04 and .07. Strangely my .07 readings also had a high bone phosphate reading which went back into spec later.
I don't worry about such variations.
Paul

User
Posted 16 Aug 2017 at 16:29
Hi Healey and Lyn

Thanks very much for your responses makes me feel a lot better. My hospital measures 0.003 as the lowest measure able so above that is an increase. It is obvious that different hospitals work differently when measuring PSA levels. You all know that when something changes and although I am very laid back - horizontal my wife says - the old mind goes into overdrive and it's the end lol. Next blood test 3 weeks Monday so will see how it pans out. Once again many thanks.

User
Posted 16 Aug 2017 at 16:34

Hi Paul ,garys doing really well with treatment ,mainly just fatigue .he's still getting up at 6am every morning to go to work .
Since having our two gorgeous grandsons Gary seems to have got renewed energy . I think I'm with you as in pushing for a scan update even just for my mental wellbeing ! Gary never asks questions unlike me .
I've booked two holidays ,one in October sailing the med which Gary will have to relax on and a transpacific cruise in April which I've had many a sleepless nights over as have I booked to far ahead . Are your bloods only taken every 3/4 months because of the trial ending ?
Keep us updated on your progress
Best wishes
Debby

User
Posted 16 Aug 2017 at 21:33
Hi Debbie

I hope you enjoy your seafaring trips.

We've just done (April) a transpacific from Sydney to San Francisco and we both enjoyed it. Now planning Our next grand adventure.

When I first started on Stampede the blood tests and appointments were about every week but as time went they rose to 2 weeks then 1 month , 2 months. This year they have been 12 weeks but now they are up to 4 months.

My Onco is very helpful with agreeing appointments to suit our holiday arrangements as we can be abroad for long periods. In fact I' get blood tests and Prostap injections abroad sometimes.

I think my Onco is happy with all the results and so is happy to extend the time between appointments.

6am Work? What's that 😱

Paul

User
Posted 16 Aug 2017 at 22:24

Thanks for that info ,our trip is Tokyo to Vancouver stopping at Russia ,not looking forward to the flights but Heyho will be worth it.
Best wishes
Debby

Edited by member 17 Aug 2017 at 05:42  | Reason: Not specified

User
Posted 17 Aug 2017 at 10:20
Hi Debby

Pleased to see Gary is coping well and still working. It really is best to keep active and positive. Holidays are essential we have recently had a cruise in the med. and also a week in Corfu. We are off on a short break in this country next month. Just a piece of info. for you - I don't know who you use for travel insurance but it can be expensive. We use " Insurancewith " who are very reasonable. You can find them online but it is best to ring them - bit of a wait - they do ask a lot of questions lol. The company was started by a lady who had cancer but could not get insurance - the staff are well trained, polite and helpful. Hope you don't mind me passing on this info. All the best to you and Gary.

User
Posted 17 Aug 2017 at 16:57

Hi Glyn thankyou for info ,at the moment I'm with nationwide flex plus account which is £10 a month ,when I told them garys info they charged us just £129 extra a year world wide .but if it gets to expensive then I will certainly give it a try .
Hope all of your treatment is going well .
Enjoy your next holiday
Best wishes
Debby

User
Posted 18 Aug 2017 at 06:21

My wife has travel insurance as part of her current account which also covers me.
We've kept them informed of all my conditions.
We've just added angina and the cost has just gone up to £140 per year.

User
Posted 20 Aug 2017 at 20:06
I had insurance with my account at Lloyds but they would not cover me - not Lloyds fault it was Axa who provided the cover.
User
Posted 01 Mar 2018 at 09:13
Still pretty good news on the Stampede Trial I'm still on

It's now 37 months since I started on enzalutamide plus the standard Ht (Prostap) with a psa of 235.

I've just been for my quarterly review and my psa is still at .06 so fingers crossed the cancer is still under control.

My onco asked if I still want to carry on with the trial. I'm of the opinion that if it works don't try to fix it so am staying on.

I'm now going onto 6 monthly consultation which is great. It means I only get apprehensive twice a year.

I hope this helps folk starting on the journey.

Paul

User
Posted 01 Mar 2018 at 09:45

Congratulations.

Thank you for the update Paul. 

They are always good for giving people a lift

We can't control the winds - but we can adjust our sails
User
Posted 01 Mar 2018 at 09:57

Great news Paul.

User
Posted 01 Mar 2018 at 13:21
That’s very encouraging news Paul. Best wishes, Ian.

Ido4

User
Posted 01 Mar 2018 at 16:56

Great news as Gary’s on the same trial ,as with you he’ll being staying on it all the time it keeps it under control .
Not sure about the 6 monthly app after going every 8 weeks it sounds a bit scary !!
Best wishes
Debby

User
Posted 01 Mar 2018 at 18:27
Hiya Paul,

This is really good news mate. I'd certainly greet 6 monthly appointments with positivity, especially when you can put apprehension on hold and relax in that knowledge. Plus....springtime will soon be upon us to make a lot of us feel better. Take care.

Paul

User
Posted 01 Mar 2018 at 20:31
That's wonderful news, Paul. You deserve it.
User
Posted 01 Mar 2018 at 23:30
Great news Paul. Am also on stampede trial arm J. Now 36 months on HT Zoladex, enzalutimide and abiraterone. PSA reading still undetectable. There are obviously big differences area to area as I have not seen my onco since I was diagnosed. Also I have blood test every 4 weeks and attend clinic every 4 weeks and complete a “lifestyle” questionnaire every 3 months. Like Debby I don’t think I would be happy with 6 monthly appts. You would think as this is a clinical trial that all hospitals would follow the same procedures but it is obvious from the posts on this site that they don’t.

User
Posted 02 Mar 2018 at 11:46

Gary currently has 4 weekly blood tests with onco every 8 ,and as with Glyn fills in a lifestyle questionnaire,as well as extra bloods and mouth swabs going to the trial for research (DNA I think) .he had been told that he will eventually be on 3 monthly then 6 monthly onco apps but not really sure if the blood will continue to be taken every 4 .its a couple of months till the 2 year trial milestone so maybe that’s when it will change .
Best wishes to all on trial and it’s great to hear follow ups
Debby

User
Posted 02 Mar 2018 at 19:38

Thanks everybody for your inputs.
Seems like this trial is having some good results
I've likewise had the mouth swab for a DNA project and complete a questionnaire every visit.
I see the increase of the time between consultations as a show of confidence from the onco and her team.
I understood that the clinical trial actually only ran for 2 years but one can continue on the medication till they stop working or decide to cease taking due to the side effects.
I was told I could reduce the dosage of enzalutamide but couldn't then go back to a full dose so I decided to continue as is. I might review this agin in 6 months

How is everyone handling the side effects
Mine are 3 hourly hot flushes which last about 1-2 minutes.
Loss of strength in legs
Tiredness

What about exercises
I'm trying to get back to jogging/running but at the moment just hike 6/10 miles twice a week
Nikon Steve and irun are my inspiration

Edited by member 03 Mar 2018 at 09:52  | Reason: Not specified

User
Posted 02 Mar 2018 at 20:32

Gary still working full time and suffers with fatigue but finds that working does help keep him going ,as for flushes he still gets them daily but strangely after I moaned about having to change the bedding more often he started to wear PJ’s and has found they’ve stopped at night !! Only gets really hot feet .a small price to pay for the results he’s getting at the moment ,long may it continue
Debby

User
Posted 02 Mar 2018 at 21:02
I second Healeys post - this trial arm J seems to be producing some good results. Long may it continue. I’ve also given a swab. In respect of hospital visits when I questioned my clinic nurse she told me that discussions have been had but the oncologist has insisted they remain 4 weekly. My nurse told me that they have been told that they are over managing us patients. I am quite happy with the present arrangements.

In respect of side effects I get minor hot flushes two or three times a day and sometimes in the night.

I work two or three days a week and certainly feel tired by the end of the day.

The side effect that’s most annoying is the weight gain. I have had to replace my wardrobe. I have tried to lose the weight but nothing works.

Other than that everything is good lol.

User
Posted 02 Mar 2018 at 21:19
Originally Posted by: Online Community Member

Gary still working full time and suffers with fatigue but finds that working does help keep him going ,as for flushes he still gets them daily but strangely after I moaned about having to change the bedding more often he started to wear PJ’s and has found they’ve stopped at night !! Only gets really hot feet .a small price to pay for the results he’s getting at the moment ,long may it continue
Debby

That's odd Debby I get really cold feet

User
Posted 02 Mar 2018 at 21:22

My acupuncturist told me that he also works for the NHS giving acupuncture to men on HT for their hot flushes. He works out of the regional urology / oncology department. I might send J along because he spoils all my lovely bedding. The odd thing is that he stopped HT 5 years ago but the flushes have never left him.

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

User
Posted 02 Mar 2018 at 21:38
Originally Posted by: Online Community Member
I second Healeys post - this trial arm J seems to be producing some good results. Long may it continue. I’ve also given a swab. In respect of hospital visits when I questioned my clinic nurse she told me that discussions have been had but the oncologist has insisted they remain 4 weekly. My nurse told me that they have been told that they are over managing us patients. I am quite happy with the present arrangements.

In respect of side effects I get minor hot flushes two or three times a day and sometimes in the night.

I work two or three days a week and certainly feel tired by the end of the day.

The side effect that’s most annoying is the weight gain. I have had to replace my wardrobe. I have tried to lose the weight but nothing works.

Other than that everything is good lol.

Hi Glyn

Yes he weight gain is annoying. In one of my consultations my onco asked me about what bothered me most and I said that I now have a spare tyre and my waist had risen 2 inches. She and the nurses all had a chuckle at that since they all had put on weight themselves and were desperately trying to lose weight.

My weight did increase by a stone but I've since managed to reduce it by half a stone. I don't eat a lot but I do eat healthily and also exercise well which for me seems enough but I'm still a bit of a Michelin man.

Thanks for your input

Paul

Edited by member 02 Mar 2018 at 21:44  | Reason: Not specified

User
Posted 03 Dec 2018 at 20:58
I cant believe its March since I last posted.

In May/June I started to get a lot of chest pains and aching fingers, feet and arms.

I initially put it down to the after effects of jogging and motorcycling but it got worse and my fingers started swelling until I couldn't write.

I read up again on the side effects of Prostap and Enzalutamide and sure enough these are listed.

So at my next oncos appointment we discussed these symptoms she agreed to me stopping taking the Enzo for 4 weeks

to see if that made any impact. As it turned out it didn't seem to reduce the pains over the 4 weeks.

However on the whole my blood results were ok with psa at .05. so we carry on. I'm back on 3 monthly checks for now.

Later in July I had another blood test with a Rhumatologist and was diagnosed as having Polymyalgia Rhumatica and put on steroids. My ESR reading was high which indicated onset of Rhumatoid Arthritis

My next Onco appointment was October 2018 and again showed all was under control with the PCA and psa was .06

At that appointment I mentioned my sharp chest pain and she sent me immediately for X Ray, Blood Test and ECG. The tests were carried out within 90 minutes and I was back to be told all results were normal and my lungs were fine.

What an excellent NHS we have.

So all seems fine there but now I seem to be fighting another battle with the aches and pains of Rhumatics which has curtailed my jogging, my hiking and even my motor cycling, so I'm not in the best of spirits at the moment. I cant even keep up with my wife when shopping (mind you could I ever?)

So if anybody has any spare hugs I'm feeling sorry for myself

Anyway I'm still not convinced that the swelling and muscle pain isnt a side effect from the Prostap/Enzalutamide and will ask my Onco again at my next appointment in January.

Thanks for listening my ramblings

Paul

User
Posted 03 Dec 2018 at 21:27
Big virtual hug Paul

Fingers crossed everything settles down

🤗

User
Posted 03 Dec 2018 at 22:20
Man - hug from me ! My leg pain from thigh to ankle on both legs is blamed on arthritis and I’m only 51. I’m convinced it’s something more sinister but tests say it isn’t.
User
Posted 03 Dec 2018 at 22:41

Big hug from me Paul. Keep your chin up and try and be positive. You have had various tests which are all clear. The problem is if you are like me any aches or pains you immediately blame them either on the drugs or the Pca. The problem is the mind is very good at pointing you in the wrong direction. Perhaps you do have rheumatics. Is it treatable.? 

User
Posted 04 Dec 2018 at 06:08
Just read your profile Paul. Wow, you're an inspiration to us all. Well done.
User
Posted 04 Dec 2018 at 08:30
Sending a big hug and best wishes to you ,

Take care

Debby (x)

 
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