New Canadian Member

[Zee5]

Hello everyone! I'm 56 years old Canadian and living in Ottawa, Can. I am very active - skiing, playing hockey (goalie), water skiing, boating, gym, hiking, etc. I have been on Long Term Disability for the past 2 years and now recently Medically Retired, so I have even more time to play hockey and go to the gym, not to mention clean house and cook meals as well!

I have recently hit the Castrate Resistant stage of my battle and am looking for options as the tools in my doctors "bag of tools" is running low. Here's my story;

- April 2012 - diagnosed with a Gleason 7, and PSA-5.5.

- July, 2012 - Radical Prosatectomy

- Fall 2012 - 53 rounds of Radiation and started 6 months of ADT

- PSA started to rise in Aug 2014 - PSA=1.08

- Nov 2014, Feb 2015 - Bone Scan and CT scans - all clear

- Mar 12, 2015 - MRI: revealed a small mass by prostate bed

- Mar 17, 2015 - Choline 11 PET scan (Mayo Clinic) - found same mass as MRI

- April 27, 2015 - 1 Lupron injection. PSA was 4.31.

- Sept 11, 2015 - 2nd surgery to remove mass by prostate bed. PSA = 0.05

- Jan, 2016 - PSA started to rise = 0.75

- May 3, 2016 - 2nd Choline 11 PET scan (Mayo Clinic) - found a mass and 3 enlarged lymph nodes

- June 6, 2016 - started Lupron injections every 3 months: PSA = 7.4

- July 11, 2016 - started 6 rounds of Chemo (Docetaxel)

- Aug, 2016 - PSA dropped to 0.05 and stayed there till May 2017

- July 17, 2017 - PSMA scan in Heidelberg, Germany - all clear as my PSA was too low (0.75)

- Held off on next Lupron injection to let PSA rise to above 3

- Oct 26, 2017 - PSMA scan at UCLA, LA California (PSA=4.21) - revealed 3 cancerous masses

- Nov 3, 2017 - Surgery #3 to remove the 3 cancerous masses. NO EFFECT on PSA - kept rising.

- Dec 5, 2017 - PSA = 10.5. Started Lupron injections again till the present.

- Feb 1, 2018 - PSA dropped to 1.43 indicating the Lupron is not very effective anymore.

- Feb 2, 2018 - Started Zytiga. PSA dropped to 0.6 and stayed in that area till Sept, 2018.

- Sept 2018 - CT and Bone scan all clear

- Dec 2018 - CT and Bone scan all clear

- Jan 15, 2019 - PSA=10.70. Seems the PSA is doubling every 6 weeks or so

- Jan 15, 2019 - started Low Dose Naltrexone to hopefully at least slow down the PSA rise.

That's where I stand now. I am basically deemed Castrate Resistant but no signs of metastasis, yet! My doctor/surgeon/urologist/oncologist is waiting to get approval from Jensen (drug company) for me to start Apalatumide (Erleada). Hopefully, that will drop my PSA down again for 1 to 2 years. Failing that, my doctor is prescribing chemo again, which I do not want to do.

So I'm asking the group, what other options are there, especially in the US as the Canadian protocol is much less aggressive than the US protocol.

Thank you!!

[Tall_Allen]

Were your cancerous masses all in the prostate bed (Stage T4,N0,M0)? Both Erleada and Xtandi are approved for non-metastatic CRPC. Darolutamide will also probably be approved soon. As you've learned, treating PSA by removing such masses may not accomplish anything (other than artificially reducing the PSA biomarker) if your cancer is systemic and micrometastatic. Almost all the other approved drugs (Zytiga, Provenge, taxanes, Xofigo) are only approved for metastatic PC. Unfortunately, there aren't many clinical trials for men in your situation.

[Zee5 in reply to Tall_Allen]

Thanks for the quick reply! No, some of the masses were not in the prostate bed. One in particular was up higher in my abdomen. Referring to my last surgery, we were hopeful that I had Oligometastatic prostate cancer, and the 3 masses found by the PSMA scan were the only ones. Unfortunately not. I recover form surgery very well, so we thought it was a low risk to have a 3rd surgery.

[Tall_Allen in reply to Zee5]

Well if the masses were distant, you would not be able to get Erleada in the US. But having had distant metastases, and castration resistant, you would be able to get Zytiga, Xtandi, Provenge, and Taxotere. It sounds like those were not bone mets, so Xofigo would not work.

[Zee5 in reply to Tall_Allen]

Thanks for the update. I've been on Zytiga for about a year and it seems it has run it's course as my PSA is rising quite rapidly. I already did Taxotere and don't want to do that again, as my feet are about 50% numb and will only get worst if I do it again. My doc is pleading my case for Erleada as we speak and should no the outcome shortly. Cheers!

[Hirsch in reply to Tall_Allen]

When do you think darolutamide will be approved?

[Tall_Allen in reply to Hirsch]

They usually release findings at a large meeting, like ASCO, and publish soon after. It will be after that.

[RyderLake2]

You haven't mentioned clinical trials at all in your bio. I live in British Columbia and there are a number of interesting clinical trials going on at the BC Cancer Agency including a Lutetium 177 trial. I am sure there are similar trials going on in Ontario. Good luck!

[Zee5 in reply to RyderLake2]

Thanks for the input. I will definitely look into Lutetium 177 and discuss with my doc. My doc is the Director of Urology/Oncology for the Ottawa Hospital and sits on many different Advisory/Approval groups for Ontario so he should be up to speed on any clinical trials. I'll discuss with him very soon. Cheers!

[ctarleton in reply to Zee5]

This Canadian Clinical Trials search tool might be helpful, either now or in the future. You can search it all kinds of ways.

canadiancancertrials.ca/Def...

Charles

[Zee5 in reply to ctarleton]

Awesome - thanks for the link. Will definitely pursue this.

[MarkBC]

Welcome to the group Zee5. I am also Canadian (Victoria BC), 55 years old, diagnosed in July with a number of bone mets. Still castrate sensistive and on ADT, but the cancer is aggressive (gleason 9, PSA 103) so not sure how long sensitivity will last. Recently finished chemo. My sick days from work (teacher) are almost used up. I am in the process of arranging long term disability coverage. I plan to medically retire like you. I don't have the energy level to deal with 30 teenagers all day long anymore. I assume you applied for a CPP disability pension. Was it easy for you to get approval for that? I'm assuming stage 4 prostate cancer will qualify.

I hope you are able to find a treatment option to keep you going. At my last urologist appointment, the doctor talked about the Lutetium 177 trial as an option when I reach that point.

[Zee5]

Well, hate to say it Mark, but welcome to the club. It's a good idea to retire medically if you can, especially in your line of work. Being on ADT and having chemo sucks the energy out of you. The last think you need is to deal with teens that are full of hormones! LOL. I was on LTD (long term disability) twice since my PCa journey started. First time was for about a year and the 2nd time was about 2 years. My insurance company only allows a person to be on LTD for 3 years cumulative, so in May of last year I had to apply for Medical Retirement, which I was accepted for no problem. Here's a valuable point to pursue. Last May I was 55 yrs old and able to retire at the age of 60 without a penalty. However, in the case of a Medical Retirement situation, I was able to retire at age 55 WITHOUT a penalty. Hopefully that will be the case for you. This is actually a mute point in my case because my insurance company Great West Life approved me to be on LTD till the age of 65. They pay me 70% of my salary while I'm on LTD (till age 65). This is a lot more than my pension as I was only employed with my employer for 8 yrs. About 1.5 yrs ago GWL requested I apply for CPC, which I got. You and your doctor have to fill out the forms. At that point my 70% salary was comprise of LTD and CPC. Now that I'm medically retired, I still get paid 70% of my salary, but now it is comprised of LTD, CPC, and my Pension. I hope this info helps in your situation. Best of luck!

[MarkBC]

Thanks for the info Zee5. The B.C. Teachers Federation has a self-funded salary indemnity plan that I have been paying into for the last 26 years. I can access it when my sick days run out. It will provide a pension of 58% of my salary tax free, which should be similar to what you get. (Our dues are taken from after-tax dollars, so the benefit is not taxed). This will last until I am 61 (5+ years, if I make it that long) at which time I am forced to officially retire and switch to my regular pension. The Federation also covers my contributions to the regular pension plan during that time so it will continue to grow until age 61.

The Federation will claw back money from a CPP disability pension but I've been advised to apply anyway. Apparently it will ensure a larger CPP cheque after I officially retire at 61.

You and I are very lucky to be taken care of financially. I feel for the guys here without good sick benefits.

Mark

P.S. Enjoy the cold weather and snow in Ontario that I'm seeing on the news. I've been out gardening and admiring the spring bulbs that are blooming here in Victoria. ☺

[Zee5]

Gardening?? Good mind therapy! We have about 2ft of snow and shoveling every day (good exercise though).

Yes, feeling very lucky with the financial situation and not feeling guilty for not working as my wife is running crazy with her Real Estate business. Luckily am able to help my wife with the business and get rewarded with a Starbuck's gift card (which she can write off)!

Cheers,