Stampede Arm J my update

User

Posted 04 Dec 2018 at 10:43

Virtual man hug from me.

Ian

Ido4

User

Posted 05 Dec 2018 at 09:26

Thankyou so much everybody for your replies, it does so help.

My next steps are an appointment with rheumatic nurse next week then my quarterly Onco visit in mid January

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 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 12 Jun 2019 at 20:00

Hi Debby

thanks for your update too on Gary.

sounds like things are going ok with him too. That is such good news.

I know how he feels about the loss of strength and the fatigue. I keep thinking I'll do more exercise and get back to somewhere near to where I was but no I still run out of steam. I'm sure he knows that all the gains now are small ones but it's still worth the effort.

Best of luck to you both and keep posting

paul

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 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 22 Jul 2019 at 02:11

Good news again Paul ,Gary has his check up on Tuesday so fingers crossed . He’s had to have a bowel screening as just before he was diagnosed he should have had one for his 55 age health check but due to everything else going on it was forgotten. I mentioned this in January to the consultant and they’ve given him a full colonoscopy and mri so just waiting for those results as well . He has been suffering from stomach bloating ( he has put on about 20lbs ) and excess wind ,not sure if the meds can cause this or we’ve anything to worry about .

best wishes and long may your results stay low

Debby

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 22 Jul 2019 at 21:47

Hi Paul very pleased that everything is going well. So many ups and downs.

I am on arm J - enzolutomide + abiraterone + prednisolone. Also Zoladex injection every 12 weeks.

Have been suspended from the trial for 8 weeks due to high blood pressure- 200+. !!!!!!!!!! Not happy about it but have to accept oncologists decision. Put on blood pressure tablets to try and stabilise the blood pressure.

However good news at my 4 weekly meeting this morning 22/7. Blood pressure down to acceptable level and am now back on the trial. Yippee !!!!!!!!

Also my PSA is still undetectable. Good news all round.

Am now on month 54 and feeling pretty good. Ok get a bit tired and fatigued so have to adjust accordingly. My biggest gripe and this may seem petty to some people but I wish I could lose some of the 3 stone I have put on. My clinic nurse has informed me that I will probably never be able to lose it. Oh well look on the bright side I am still here and able to work part time.

Good luck Paul and hope both of us are here for another 54/55 months.

User

Posted 23 Jul 2019 at 08:25

Glyn

Great to hear from you and how well you are doing.

We seem to be on similar paths and long may we be so.

My wife tells me not to do as much because of the fatigue but I still hike and today am trying a 6 miler from Heiden Bridge. I know I will suffer for the next two days with fatigue but I think it's worth it.

Good news about you blood pressure. I've had two times where I've been off the Trial for a few weeks but gone back on again.

What's your thoughts at 5 years. I ponder about giving it a rest but if I do I can't get back on the trial. The other alternative is to reduce to 2 tablets.

Meanwhile it's a lovely day and I'm off to Ilkley Moor baht at.

Paul

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 24 Jul 2019 at 19:21

Peterco

Hi as you appear to have completed your treatment I assume you are in remission. It will take a long time to lose the excess weight as the drugs take a long time to leave your system. You are obviously going about it the right way by exercising. It is also important to watch your diet. All the best to you.

Glyn.

User

Posted 26 Jul 2019 at 18:47

Yes last of my treatment finished 12 months ago. Have had undetectable PSA for quite a while thankfully. Effects have started to fade e.g. got body hair back and shaving everyday although I was quite happy with the former. Told to expect 12-24 months for all most of stuff to get out of system, weight may be longer I guess.

Cheers

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 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 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 20:42

Well it's 2020 and I'm still on the Stampede Trial with enzalutamide and Prostap.

i had my quarterly Onco appointment on Monday and all is still well. My psa is at .03 and all other pointers are ok.

I am now 61 months since diagnosis so I'm pretty content with the results of the trial.

Side effects are pretty much the same. I still have mild flushes but these are of no real issue.

I'm pretty sure a good diet and exercise are helping with the control of the cancer and my wife and I are about to start a proper veggie diet plus fasting. I also want to try and up my exercise.

I'd like to think that this will help but am not sure how I will know.

Bad news is that my Oncologist is taking a break and moving on so I will have a new one from the next appointment in April. It's a shame as I've got so used to her, but then it'll be interesting how my new Onco will view my condition.

I am hopeful that others still on the trial are doing well and I'd love to hear how you are all doing.

Best wishes to you all

Paul

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 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 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 17:27

So glad you are doing ok still, we were both diagnosed around the same time , I was not put on Stampede but ended up on zoladex and abiraterone (same as you really just route a rather than b) , let’s hope we can both keep going for many years to come.

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 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 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 30 Aug 2020 at 14:47

Great to hear you update ,Gary still doing fine and working .

Missing our holidays due to lockdown 😬,should have been on the rocky mountaineer soon .

Keep well and enjoy your hiking .

Debby

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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