Prostate Cancer Journey

[thor17]

Hx ...De novo metastatic [over 20 bone mets] Gleason 9 diagnosed in 2014. Initial treatment Radical prostatectomy with LN dissection, 6 cycles of Docetaxel, and 3 months of Xtandi. Since that time intermittent treatment with Darolutamide full dose and then half dose. 7 different areas of bone mets tx with SBRT. I have been off treatment more than 50% of the last ten years Present PSA <.02

[Newdiag-NC]

Hi Thor! It sounds like you are doing great!

When you spoke of 6 Docetaxel cycles, did you mean 6 cycles of 6-8 infusions? Or 6 infusions?

Hope you continue responding well!

[Oldeenglishbulldogge in reply to Newdiag-NC]

Hi hope you're doing well and I with many blessings on you and your life and your family. Can you please tell me what an infusion is A friend of mine had to infusions thus far I thought he was getting radiation pellets but he said he's getting infusions What exactly is infusion and I have prostate cancer myself right now I'm on hormones started with a prostectomy in 2019

[Newdiag-NC in reply to Oldeenglishbulldogge]

Hello! I could have been using the wrong word but what I am referring to is chemo infusion, when the patient gets chemo for about an hour at a time through IV or port, then waits 3 weeks before getting the next one. Sorry for any confusion!

[thor17 in reply to Newdiag-NC]

6 chemo infusions each 3 weeks apart

[Newdiag-NC in reply to thor17]

Thanks!

[Apisdorsata]

Good to hear this encouraging word ! So far I (Gleeson 4+4 with lymph node mets in 2015 but now with four bone mets for the last two years) have only been on various androgen suppressors (leuprolide, bicalutamide, enzalutamide, now abiraterone only), radical prostatectomy, and radiation. I have been vary fearful of docetaxel because of side effects and worry that it won't be effective for very long.

My story is that 40+ years ago I was a medical oncologist. We did a lot of good for people with diseases that respond well to the treatment we had then (lymphomas, breast cancer and some childhood leukemias) but for common diseases like lung cancer, colon cancer and prostate cancer there was little benefit from the terrible toxic cytotoxic drugs we had available. It was depressing. So I went back to school and became a patholgist.

Anyway, things have really changed in 40 years. I have said since diagnosis that I would never consider drugs like docetaxel even though I know that it is likely that the cancer in me will some day no longer be treatable with androgen suppression. But reading stories like yours makes me think I will submit to docetaxel or whatever my medical oncologist recommends if the time comes that it is the best hope for me.

So thanks for your story.

[Shellhale in reply to Apisdorsata]

HiRegarding Androgen suppressors do you alternate? Husband is gleason 9 with 12 lymph nodes only. I cycle of docetaxel but was discontinued due to cytotoxic reaction. He is on Xtandi only. Trying to avoid ADT. Psa started creeping up and doubled on Xtandi in 3 months to 3.1. Tried orgovyx it did knock it down to 0.6 but discontinued after 3 weeks, side effects were brutal. Now starting 20 radiation treatments to prostate only. Hoping radiation keeps it knocked down. I was Wondering if cycling Androgen suppressors would work to trick the cancer? Or just using intermittent ADT to cycle on and off.

.

.

[Apisdorsata in reply to Shellhale]

I don't alternate. I've had sequential treatments largely because I've seen four different oncologists. I've had several long treatment vacations largely because I took radiation to individual mets. The longest vacation was over two years. It's true that this doesn't cure and some disparage it as "whack a mole", but it works for me for better quality of life.

It's possible that alternating treatment drugs could reduce emergence of resistance but I'm not aware that this has been tested in well designed studies so we don't know.

Abiraterone alone causes me the least trouble with side effects and so far works well. Combination with leuprolide may work better but with more side effects. I guess you make your choice based on your own personality and desires.

[Shellhale in reply to Apisdorsata]

I've heard of this approach being called adaptive therapy to avoid resistance. Similar to BAT without the testosterone.

[Shellhale in reply to Apisdorsata]

Have you heard of using hyperbaric to help with radiation therapy efficacy? We did get a mild HBOT for home use. Also I think it will help with RT side effects

[thor17 in reply to Shellhale]

alternate Darolutamide 2-3 months on then off until PSA starts rising , annual PSMA pet scans SBRT, radiation if something is found.

[Shellhale in reply to thor17]

Do you also take ADT? I think this is a reasonable approach for better quality of life. How long has radiation shown to be effective? We are also using hyperbaric in between radiation sessions.

[thor17 in reply to Shellhale]

No ADT since 2015. I did one month of Orgovyx with full dose Darolutamide when I had radiation to a bone met this year. PSA back to <0.02 after that.

[Shellhale in reply to thor17]

That's great! So only on monotherapy nubeqa intermittently.

[Voodoo33993]

Hi Thor. I too have many bone mets. Can you share with me the name of your MO & RO? Thanks in advance.

[thor17 in reply to Voodoo33993]

MO is at Mount Sinai in NY and RO is now at MSK

[BigTom123]

God blesses you with a long life. I hope that you feel strong and well each day of your life.

[dhccpa]

RP even with 20 bone Mets? Then intermittent treatment? Is your doctor experimental, or are you directing your treatment? Or am I missing something obvious?

[thor17 in reply to dhccpa]

I am a retired surgeon, all treatment is agreed upon with my MO after our conversations.

[dhccpa in reply to thor17]

Great stability however you do it. I hope I can give a good 10-year report! 6 years in now.

[j-o-h-n in reply to thor17]

Women say "a surgeon needs no urging"......

Good Luck, Good Health and Good Humor.

j-o-h-n

[Yzinger]

yeah this a post thats get others thinking they should go down that road....hmmmm

[fourputt]

Thank you for posting this. Yours is a story we all need know.

[Skilover]

Both good news and interesting. I am wondering where you are being treated and also what kind of diet you have bee on since your dx. I was dx in 2012 with 4-5 bone mets along with one lymph node (that was removed-along with 33 clean ones-when I had my prostate removed in 2012. Not many surgeons were removing prostates when patients had bone mets back then. My MO was willing to "experiment" and have the surgery performed upon me (and- at the time- only 12 others). But- I have never had chemo as the benefits of triplet therapy weren't know back then. I am not sure when triplet therapy (which includes chemo) became the SOC but it sounds like you and your MO were ahead of the game in 2014. My PSA became detectable and rose during 3 "vacations" I had during my first 5 yrs and re-appeared again about 2 yrs ago. My MO had my biggest tumor "zapped" with radiation which brought my PSA back to undetectable once again, but just for several months. It became detectable again about a year ago and I expect tomorrow's labs to show it above .20, at which point my MO will schedule another PSMA and we will see what to do after that.

[thor17 in reply to Skilover]

I am working with a MO at Mount Sinai NYC. No special diet but take a number of supplements and try to stay as active as possible. Suggest annual PSMA scan and SBRT treatment to any positive findings.