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[Curehunter]

Hello everyone. Looking for some inspiration. Diagnosed with metastatic pc two months ago, psa 216, gleeson 8. On adt (prosap) + abiraterone. Wish you well and keep safe.

[Magnus1964]

Didn't you have any surgery or radiation?

[Curehunter in reply to Magnus1964]

No - no surgery or radiation. Was told not useful for metastatic pc. Straight onto adt

[Tall_Allen]

That sounds like a good strategy. What country are you in?

[Curehunter in reply to Tall_Allen]

I'm in the UK.

[Tall_Allen in reply to Curehunter]

I'm surprised that the UK is letting you have abiraterone (although I'm glad you're getting it) - I thought NICE only approved docetaxel for newly diagnosed metastatic PC.

[Curehunter in reply to Tall_Allen]

Only choice offered was docetaxel so decided to pay for Abi myself. Hoping Nice approves it soon for current environment otherwise I will be bankrupt if I am on it for any length of time. Just wondering whether I should ask for germline and somatic tests?

[Tall_Allen in reply to Curehunter]

Germline tests are cheap - the only actionable result would be if you are BRCA+ (for PARP inhibitors), but you would have to get it on a clinical trial or pay a LOT for off-label use.

Somatic tests typically run around $3-4000. The only actionable mutation (other than BRCA) is for a rare mutation MSI-hi/dMMR.

A biopsy histology/IHC analysis can sometimes (rarely) be useful, but your hospital may cover the cost. Because your PSA is high and you are ADT-sensitive, there is probably no point. Save it for much later.

[Curehunter in reply to Tall_Allen]

Thank you for the advice, much appreciated.

[tom67inMA]

Welcome to the club nobody wanted to join! I also had PSA of 216 at diagnosis with a Gleason of 8 in October 2018. By October 2019 my PSA was <0.01 and I ran a half marathon to celebrate. In a way, a new life begins with a cancer diagnosis and it's not all bad.

Unfortunately my story becomes a little less inspiring after that. Details are in my profile.

[Curehunter in reply to tom67inMA]

Thanks tom67inMA. I'll have a look at your profile. My psa is now 0.68.

[Irun]

Sorry you are here.

November 2014 PSA 342 Gleeson 9 . I had docetaxl and started abiraterone Jan 2016, I am still on it now.

PSA 0.12, full body mri scan 2 weeks ago all mets gone apart from one lymph node in pelvis.

I ran 2 marathons on chemo in 2015 and have since run 1,000s of miles in multi day ultra marathons round the world.

No doubt like you I thought the end was imminent but some of us can get a good number of years quality of life.

Take care of yourself, now is the time to eat healthily, drink less beer and exercise .

[Curehunter in reply to Irun]

Thanks Irun, that is inspiring. I don't run marathons but continuing to exercise. I missed out chemo as too risky in the current COVID-19 env. I am assuming Abi does not kill the cancer as chemo does - it just keeps it quiet?

[Irun in reply to Curehunter]

Chemo does bash the cancer but it is a short blast and never gets it all . I think of chemo as like weed killing a lawn, it kills the weeds but eventually the sun will shine, the rain will fall and the weeds will come back . Abi is more of a weed growth inhibitor but eventually the weeds get immune to it .

Recent studies indicate there is little difference between early chemo or abi as both increase life expectancy. Chemo still remains an option later on for me again and for you a first time .

As for exercise, the key if you are able it to do a minimum of 20 mins a day where you increase your heart rate . Ideally an hour but I know that is hard for many . It’s all about a higher heart rate as this helps oxygen flow faster round your body, cancer generally hates oxygen , if also helps the natural filters in your body flush out the rubbish .

Whatever, never give up and make the most of it every day

[Curehunter in reply to Irun]

Thanks for the advice, much appreciated

[Irun in reply to Curehunter]

Sorry , one more thought that may help mindset , if you said to any human , more exercise or less they would all say more . If you said more veg and fruit in your diet or less they would say more . Smoke or not they would say not , drink alcohol more or less they would say less so if that is way is generally accepted to be a normal healthy person then those of us sadly with cancer all that applies even more so. My onco has often said that he believes i am here still in part to the more healthy way I live and when the cancer has another go at me I will be stronger and more able to fight it because of that too .

[Curehunter in reply to Irun]

You are absolutely right. It is unlikely I will be running marathons soon but certainly will be maintaining healthy lifestyle. I wish you many more years of health.

[2dee]

Dx 2018, stage4 fully metastasized, PSA 1300+, given 6mo expiration date.

Still here, doing pretty good, PSA just starting to climb again about 1 point a week. Adding Xtandi to my Lupron therapy very soon.

2Dee

[Curehunter in reply to 2dee]

Hi 2dee. Hope Xtandi works well for you. New therapies coming out all the time. Keep safe and wish you well.

[larry_dammit]

It’s a long journey but the monsters can be battled. Do what your doctor says, don’t wait to long to do the chemo . I was diagnosed in August of 16, went into chemo 30 days later, have been on Xtandi , lupron and Xgeva ever since. Feeling good as I can . But spending time with my loved ones ,finishing some hobbies,and loving life a day at a time. Fight that monster 🙏🙏🙏

[Curehunter in reply to larry_dammit]

Thanks larry_dammit, that's inspiring. Missed chemo as too risky in the current COVID-19 env. I was told Abi is just as effective as chemo.

[j-o-h-n]

Welcome Curehunter.... (aren't we all?)

Give us more info please: Age? Location? Treatment(s) to date besides hormones? Doctor(s) names? All info is voluntary but it helps us help you and helps us too... Thank You...

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 04/28/2020 1:15 PM DST

[Curehunter in reply to j-o-h-n]

Thanks j-o-h-n. I'm 58, based in London, UK and am being treated at the Royal Marsden in Sutton. I'm Stage 4 with high volume mets in the bone. Normally chemo would have been the first line treatment but too risky in the current COVID-19 env so went straight onto Abi. No other treatments.

[j-o-h-n in reply to Curehunter]

Thank you a quick and detailed reply. It may be a good idea to cut and paste your info/bio on your home page for future reference by you and by our members. 58? I've got dandruff older than you. Remember Pca is slow growing and you'll be around for many many years.... Keep fighting those little buggers....... and -

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 04/28/2020 4:27 PM DST

[Curehunter in reply to j-o-h-n]

Thanks j-o-h-n for your kind words. I will follow your suggestion. Best wishes

[MarkBC]

Welcome. This is a great place to learn about prostate cancer and find support. I am almost two years into this journey, age 55, Gleason 9, original PSA 103.0, mets to bone and lymph nodes. I did chemo and am just on ADT now. Feeling great, PSA low and stable, mets have shrunk. I've developed a real appreciation for all the good things in life and I'm loving it!

[Curehunter in reply to MarkBC]

Hi MarkBC

Glad you are doing well. Since dx, I'm taking life one day at a time and making sure I appreciate the good things in life. Best wishes

[MarkBC in reply to Curehunter]

Thanks Curehunter. I found the first few months after diagnosis difficult. Lots of emotional ups and downs. It does get better. Life never goes back to the way it was before cancer but it can come close once you get over the shock and learn more about it.

[Cheerr]

My dad was diagnosed 10 months ago at age 53. Similar profile to yours. We chose Chemo over Abi, but it makes sense to chose Abi now due to Covid. First few months are always going to be hard- from accepting it to processing all treatments options and uncertainty about the future. But I can tell you that with time, you’re going to feel better and more in control. So don’t overburden yourself. Wishing you the best in your ongoing treatment.

[Curehunter in reply to Cheerr]

Hi Cheerr

Thanks for the reassuring words, much appreciated. I wish all the best for your dad.