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 19:09  | Reason: Not specified

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

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)

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

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

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.