Stampede Arm J my update

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 18:09  | Reason: Not specified

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

.

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

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

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

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

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.

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.

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

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

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 04:42  | Reason: Not specified

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.

Great news 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

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

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.

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

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 17:51  | Reason: Added I fo

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

 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)

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

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

Best wishes Debby

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

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

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.