Stampede Arm J my update

User

Posted 22 Jul 2019 at 20:47

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 07:25

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 20:11

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 17:13

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 18:21

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 17:47

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 19:35

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 19:46

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 16:17

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 05:52 | Reason: updated post

User

Posted 10 Aug 2019 at 09:19

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 12:46

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 15:48

Great news

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

User

Posted 28 Jun 2020 at 16:24

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 16:27

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 19:36

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 19:46

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 21:24

Good news Paul.

Ido4

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