SOC is working for me - so far anyway. - Advanced Prostate...

Advanced Prostate Cancer

22,262 members27,955 posts

SOC is working for me - so far anyway.

Bjry profile image
Bjry
36 Replies

I’m 77 and first diagnosed in July 2018 as Stage 4 Gleason 8 PCa with widespread metastases. I had a great response to the standard care of Zoladex and 6 sessions of Docetaxel. Scans in May 2019 and showed a significant reduction in tumour volume, my PSA reduced from 152 at diagnosis to a nadir of 0.07 in May 2019 and then a statistically insignificant decline to 0.06 in February 2020. By September 2020 my PSA had increased to 0.2; still a great number but triple my nadir and the expert advice is I have progressed from hormone sensitive to castrate resistant. The other crappy news is that in the last few months I have developed mild cardiac arrhythmia. No sign yet that the arrhythmia is impacting my lifestyle but what can you do other than wait and see.

As I’m castrate resistant with PSA doubling every 3 months I started bicalutamide, an oldie but in some cases it still produces great results. With Stage 4 the only certainty is that the disease keeps on keeping on. The bottom line in this deadly business is how many, how large and where the tumours are. My scans and blood test in October were far better than I expected. After one month on bicalutamide my PSA dropped to 0.15, my scans showed no soft tissue tumours and none of my multitude of bone tumours show any activity. Presumably the tumours that remain are too small to be detected by the technology used in my scans. I remain symptom free, for Stage 4 that’s about as good as the news ever gets.

Written by
Bjry profile image
Bjry
To view profiles and participate in discussions please or .
Read more about...
36 Replies
6357axbz profile image
6357axbz

Right on brother! All the best to you.

treedown profile image
treedown

Life keeps on keeping on as well so enjoy! Best wishes and may things only get better for you.

SPEEDYX profile image
SPEEDYX

That's what we like to hear!!!!....Fight On!!!!

Tall_Allen profile image
Tall_Allen

Why not add a powerful hormonal agent like Zytiga or Xtandi instead of a lightweight like bicalutamide?

Bjry profile image
Bjry in reply toTall_Allen

I have to discuss this again with my oncologist but the aim is to get whatever mileage I can from bicalutamide then move on to Zytiga or Xtandi.

Tall_Allen profile image
Tall_Allen in reply toBjry

You get more total mileage if you start with Zytiga or Xtandi. Men who used bicalutamide + ADT died much sooner than men who used Xtandi + ADT. Email these links to your oncologist:

nejm.org/doi/full/10.1056/N...

thelancet.com/journals/lano...

ascopubs.org/doi/full/10.12...

londoncyclist48 profile image
londoncyclist48 in reply toTall_Allen

Thanks for the links. Interesting.

I'm 48 and have advanced prostate cancer. I'm currently on enzalutamide, bicaltumide and zoladex monthly injections. I started on degalerix.

treedown profile image
treedown in reply tolondoncyclist48

Welcome your clearly another cyclist. Have you kept it up?

londoncyclist48 profile image
londoncyclist48 in reply totreedown

I haven't been out on the bike recently for a variety of different reasons but I'm hoping to start again. How are you finding it?

treedown profile image
treedown in reply tolondoncyclist48

I was pretty active before dx last year and have set my goal 600 miles higher for this year. Speed and distance has both increased and if nothing changes may be 1000 miles more than last year. It has been a big help for me mentally and physically. We have a few other riders on the forum PatrickTurner and addicted... to name but a few putting in big miles. They are both in their 70s but I am closer to your age at 57. Hope your doing well with your treatment.

Tall_Allen profile image
Tall_Allen in reply tolondoncyclist48

Why would you take enzalutamide and bicalutamide? They do the same thing (blocking androgen receptors) but enzalutamide does it far better.

londoncyclist48 profile image
londoncyclist48 in reply toTall_Allen

Hi Tall Allen, I understand I am taking the bicaltumide to prevent tumour flare. I had to start taking them exactly 2 weeks before my zoladex injections. I was told to take them by my urologist but the enzalutamide was prescribed by my oncology team. I presume I will come off the bicaltumide at some point. Thanks for pointing out the contradiction. I will follow it up with my urologist. I have had some bad headaches since taking the enzalutamide. How's everyone else found them?

Tall_Allen profile image
Tall_Allen in reply tolondoncyclist48

It sounds like you have too many cooks. You no longer need a urologist, do you? The bicalutamide prevents flare for about 2 weeks when starting Zoladex. It should have been discontinued then. You definitely should not be taking both - you are only compounding side effects.

Bjry profile image
Bjry in reply toTall_Allen

Thanks. The 3 links are clear cut - I'll take the papers to my next appointment.

Tall_Allen profile image
Tall_Allen in reply toBjry

I suggest you email them first. It is a courtesy to give your doctor time to review them in advance of meeting with you. I usually email the links with a short note : "I would like to discuss these with you at our next appointment."

Bjry profile image
Bjry in reply toTall_Allen

good advice - thanks

londoncyclist48 profile image
londoncyclist48 in reply toTall_Allen

What's your view on chemotherapy with docexetel? I'm in London UK. I've been told that they're not doing it because of Covid19 and I've been been put straight on enzalutamide. The oncologist says it's better than chemotherapy.

Tall_Allen profile image
Tall_Allen in reply tolondoncyclist48

Too bad about the docetaxel. I know men who are getting infusions currently, but they are getting Neulasta with it. I don't think it's better, but it's not worse either. There was a trial in the UK that showed that docetaxel and Zytiga had equivalent results. Zytiga before enzalutamide seems to provide longer net use of hormonals. But alternating with chemo may help.

j-o-h-n profile image
j-o-h-n in reply tolondoncyclist48

More Bio info please...... It's voluntary. If you respond add that to your homepage.

Thank you!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 10/11/2020 6:16 PM DST

ctarleton profile image
ctarleton

Glad to hear you are feeling good, Bjry. Not bad for 77 years old!

Anecdotally, several years ago when my initial ADT became less effective, and my PSA was increasing, my Oncologist also tried a re-challenge with Casodex (bicalutamide). It lowered my PSA a little bit, but only for a couple of months. I went on to other treatments soon afterwards. I'd agree with T_A, keep Zytiga or Xtandi in mind.

Also anecdotally, I started experiencing some occasional heart A-fib & rhythm issues a few years ago, too. I saw an "electrician" type of Cardiologist for a full work-up. Got several types of tests, and eventually settled on a couple of daily oral medications that seem to be keeping the episodes to a minimum, and generally "self-correcting" without other medical intervention.

Enjoy life.

Bjry profile image
Bjry in reply toctarleton

Thanks. I expect to see a cardiologist soon, hopefully no need for medication.

JimBarringer profile image
JimBarringer

Great report. Keep up the fight!

MrDon2 profile image
MrDon2

My friend, the best of luck to you. As long as we have options on drugs to help us in this battle, we have hope. Stay strong.

j-o-h-n profile image
j-o-h-n in reply toMrDon2

Bio info please...... It's voluntary. If you respond add that to your homepage.

Thank you!!!

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 10/11/2020 6:17 PM DST

RICH22 profile image
RICH22

I'm 73 and swear by bicalutamide. I was diagnosed in 2018, started bical. in June, i believe. By Aug. my PSA dropped from 16+ to 0.117, has been <0.1 ever since. Been on finasteride and tamsulosin with it, to shrink gland and improve flow. The only SE is flimsy erections and retrograde ejaculation... but orgasm is better than ever.

Good luck, brother.

j-o-h-n profile image
j-o-h-n in reply toRICH22

Flimsy erections? Hey wait a minute Rich..... that's my excuse......

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 10/12/2020 6:00 PM DST

SPEEDYX profile image
SPEEDYX in reply toj-o-h-n

Only for a minute..that is Flimsy!!!!

j-o-h-n profile image
j-o-h-n in reply toSPEEDYX

Sorry my mistake again.... I didn't mean a minute.... I meant 60 seconds...

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 10/12/2020 6:58 PM DST

SPEEDYX profile image
SPEEDYX in reply toj-o-h-n

Every second counts!!!

j-o-h-n profile image
j-o-h-n in reply toSPEEDYX

Counts in duels must have a Second.....

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 10/12/2020 7:05 PM DST

SPEEDYX profile image
SPEEDYX in reply toj-o-h-n

Yes it could prove lethal

j-o-h-n profile image
j-o-h-n in reply toSPEEDYX

and deadly too...........

Good Luck, Good Health and Good Humor.

j-o-h-n Monday 10/12/2020 7:21 PM DST

TonyHubbs profile image
TonyHubbs in reply toj-o-h-n

Even flimsy erections are a step up from my nothing erections. Those were the days!

j-o-h-n profile image
j-o-h-n in reply toTonyHubbs

I agree Anthony..... I've even settle for one during Christmas Mass.......

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 10/16/2020 4:38 PM DST

RICH22 profile image
RICH22 in reply toTonyHubbs

If you keep doing Kegel exercises, you'll have a better chance at regaining some erectile muscle.... youtube.com/watch?v=MJ7EfGu...

This s all great news! Way to go!🙏

Not what you're looking for?

You may also like...

Just evaluated as castration resistant

Stage 4 since 9/2016 with small bone met on spine and 2 lymph nodes and PSA of 5.8. ADT initiated....
33947 profile image

PSA back on the rise - or hitting Nadir?

Hi everyone. I'm hoping to tap back into the wisdom of this crowd. First DX in 2009 with Gleason...

Castration Resistant?

We learned today that I am now castrate resistant, I have an appointment with the radiology...

How long did ADT work for you? How long did Xtandi/Zytiga work?

Past studies have indicated that shorter time to castrate resistant on initial ADT had a worse...
Cancersucks profile image

Castration Resistance

I was diagnosed in July 2018, PSA 103.0, Gleason 9, a few mets to bone and lymph nodes. No bone...
MarkBC profile image

Moderation team

Bethishere profile image
BethishereAdministrator
Number6 profile image
Number6Administrator
Darryl profile image
DarrylPartner

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.