New member: Hi My name is Gino .I’m 6... - Advanced Prostate...

Advanced Prostate Cancer

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GinoG_123 profile image
23 Replies

Hi

My name is Gino .I’m 60 years old . I just joined this chat via a refer from a friend.

I am still fully engaged with work and I run a few companies involved in the construction sector in the Greater Toronto Area. Depending on my prognosis post chemo I may consider stepping back as- if necessary I’m reasonably fit and enjoy activities like alpine skiing, golf, motorcycle racing , and travel.

I was disappointed to learn my cancer had spread as I had been chasing symptoms with my GP and a urologist 6-8 months prior. it what it is now and I’m looking forward for best possible treatments and outcomes.

I’ve done prostate specific radiation and am currently doing 2 harmone treatments and just finishing 6 rounds of chemo . I had scans done in December at my request that showed progression in the spinal cord and pelvic bones .

I will be doing pet scans again upon completion of the chemotherapy

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GinoG_123
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23 Replies
Tall_Allen profile image
Tall_Allen

Men with your diagnosis, usually do triplet therapy: Goserelin (or similar) +chemo+ abiraterone or darolutamide.

GinoG_123 profile image
GinoG_123 in reply toTall_Allen

I’m doing quad . Radiation complete , Eligard injections, Daroutamide pill therapy , and 6 rounds of chemo

GinoG_123 profile image
GinoG_123 in reply toTall_Allen

Thanks Allan .

If you happen to have any inside information on it or know anyone who’s had Pluvicto treatments could you please share . I suspect it may my next course of treatment if the chemo doesn’t stop the cancer . It was just approved by the Ontario Hospitalization insurance plan and trials show good results with specific attraction to bone lesions.

Tall_Allen profile image
Tall_Allen in reply toGinoG_123

I know several men who have had it, and many on this site. If your metastases are only in your bones, why wouldn't you pursue Xofigo?

GinoG_123 profile image
GinoG_123 in reply toTall_Allen

Ignorance . I have no knowledge of Xofigo . Please share

I happened on to the Pluvicto by chance and as it turned out my oncologist had been involved in clinical studies with it . Shortly after discussing the drug with him it got approved by our Ontario drug plan which was encouraging as uninsured costs were around 30 k cdn per treat with 6 per

Tall_Allen profile image
Tall_Allen in reply toGinoG_123

IDK if Xofigo is approved in Ontario. Ask your oncologist.

petrig profile image
petrig in reply toTall_Allen

Isnt Xofigo for metastatic castration resistant pca only?

Tall_Allen profile image
Tall_Allen in reply topetrig

The OP wrote: " I suspect it may my next course of treatment if the chemo doesn’t stop the cancer ."

MarylandGuy profile image
MarylandGuy in reply toGinoG_123

xofigo is injected radiation that goes to growing bones. In an adult that is pretty much the spots with bone metastasis. So if your cancer is in soft tissue it’s a bad choice but all bone metastasis then it’s a good medicine.

GinoG_123 profile image
GinoG_123 in reply toMarylandGuy

The mechanics are the same with Pluvicto .I’ll look into it - maybe they’re related and Pluvicto is the Canadian branding?

I’ll investigate. Thx

JohnInTheMiddle profile image
JohnInTheMiddle in reply toGinoG_123

1. Apparently Xofigo is approved in Canada and fundable by OHIP, as well as is now Pluvicto.

2. Difference: Pluvicto (Lutitium 133 and PSMA-ligand anywhere in the body) and Xofigo (Radium 233 via calcium, thus only to bones and not requiring PSMA expression).

This stuff is like science fiction. And obviously some people have very good results. If one's doctor has been involved in trials of one or the other, then they know a lot about the therapy. But to my mind they might also be wearing rose-colored glasses. What are the results of trials and how much extra time?

9020B profile image
9020B

Making more time for things you would rather be doing is a great idea, regardless of your prognosis. It certainly seems you have earned it. Many of us have used our situations as a wake up call to focus on how we spend the limited time each one of us gets on this earth.

GinoG_123 profile image
GinoG_123 in reply to9020B

Thanks, being self employed for close to 40 years has me pretty hardwired to work and I like what I do . Luckily I have two sons in their early 20’s involved in the businesses as well as some great partners and staff . I just need develop and abide by my new terms of employment

Darryl profile image
DarrylPartner

Welcome

Seasid profile image
Seasid

Try to stay employed if you can.

petrig profile image
petrig

I think you should ask/get triplet therapy ADT hormone therapy(Orgovyx or Firmagon) asap + Chemotherapy(Docetaxel) +Darolutamide(Nubeqa).Nubeqa should start together/while in chemotherapy .I am in same situation as you (mhspc =metastatic hormone sensitive prostate cancer) and triplet therapy "worked" with me. You should think about your "diet" when in adt. Less fatty food,less sugar.More vegetables,fiber,whole grain,fruits. You can manage with your mhspc. All the good for you and your family.

GinoG_123 profile image
GinoG_123 in reply topetrig

That’s great advice , thanks. I’ve always eaten relatively healthy but am currently looking at dietary improvements . Ive always exercised regularly but again will be improving on that also with more emphasis on weights for muscle retention.

petercraig2 profile image
petercraig2

Hello Gino. You haven't said what your current PSA is which is always useful to know. However from my experience PET/CT scans have little useful information. When I was at Princess Margaret's I requested a Ga-PSMA PET/CT scan which I paid for but had much more very detailed information on cancer locations which was very useful in follow-up treatment discussions.

I was not happy with treatment attitude and options at Princess Margaret's and transferred to Juravinski. However From multiple friends I highly recommend Scarborough General Urology/Cardiology and suggest getting second options

GinoG_123 profile image
GinoG_123 in reply topetercraig2

Hi Peter

My psa started at 180 with a 9 on the Gleason .

After radiation and starting the Eligard injections it lowered to 140 . Around that time I started the Darolutamide pills daily and it plateaued at 80 for a couple months - jumped up to 107 - dropped to 56 - my last bloodwork was 64 . Bloodwork is done every 21 days aligning with chemo treatments . Anything under 1 seems like a pipe dream but I’m staying hopeful.

I’ve been seeing Dr Emmenegger at Sunnybrook and while not familiar with level of care at other institutions, I feel quite comfortable with what I’ve received to date from Sunnybrook and would give them a 10/10 for organization and service.

j-o-h-n profile image
j-o-h-n

Greetings GinoG_123,

You've come to the right place for information and comradery. Keep posting....

Good Luck, Good Health and Good Humor.

j-o-h-n

PELHA profile image
PELHA

weight lifting and cardio very important to deal with SE’s.

GinoG_123 profile image
GinoG_123 in reply toPELHA

Agreed . I’ve always exercised regularly but need to step it up with more emphasis on muscle retention.

Ian996 profile image
Ian996

my experience has been a rapid rise in PSA after 2 rounds of Lu177 and 4 rounds of chemo.

My PSA is now 2730 and what is most upsetting is the rapid drop in RBC, WBC Platelets

and neutrophils The changes are almost a linear decline with no improvement The last round of Chemo was Dec 6

I have stopped all forms or cancer treatments

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