Update On My Metastatic Prostate Cancer

[dac500]

In 2018, PET scan and lymph node biopsy confirmed metastasis of my prostate cancer to many lymph nodes, originally diagnosed as low volume Gleason 3 + 3 in 2011 and treated with brachytherapy in 2011 followed by Cyberknife and ADT for an extra-capsular recurrence in 2016-2017.

In 2018, my PSA increased from undetectable to 4.48 with a PSADT of 6 weeks. I started treatment with Lupron + Bicalutamide in November 2018. Since then my PSA has dropped sharply: February 28, 2019: 0.17, May 31, 2019: 0.10, and September 5, 2019: 0.07.

When I saw my oncologist in June 2019, he mentioned holiday from ADT. I am going to get my next Lupron shot on September 9. Would a brief or long holiday from Lupron after that be advisable? Or, with metastatic prostate cancer, I should continue with Lupron indefinitely?

[Break60]

Holiday length depends on how fast PSA increases. My strategy was to wait until it reached around 2.0 , get a ctpet scan , zap the met(s) with SBRT, and go back on ADT. Later I switched to estradiol patches and dropped standard ADT. Fewer side effects and easier on your skeletal system.

[Tall_Allen]

Were some of the lymph nodes outside of the pelvic area?

[dac500 in reply to Tall_Allen]

Yes some of them

[Tall_Allen in reply to dac500]

In that case, intermittent ADT may give you a welcome break.

[dac500 in reply to Tall_Allen]

Can holiday from ADT give me more time before cancer cells become castrate resistant?

[Tall_Allen in reply to dac500]

No.

[TNCanuck]

My husband's doctors have told him that intermittent ADT is NOT an option with metastatic PCa. Best wishes to you, whatever you decide.

[Hirsch in reply to TNCanuck]

Agree

[Hidden]

I fear to take a break . We are all different ..Also I had orchiectomy . If I want t ,I’ll have to inject it .. scared that too ,could back fire for me .. Personally I’d let that dammed Psa drop as far as it can . You’re heading in the right direction . I fear APC going rampant more than adt . Good Luck..

[Kaliber in reply to Hidden]

rite on brother ... if it ain't broke as the saying goes. for me it's , if you've got your foot on it's neck ( for now ) don't give that sapsucker a change to breathe or get up off the floor. thats just me of course .... what anyone decides should include close consultation with your group of medical care providers.

of course all the SEs can hammer you into jello .... but as my wife - caregiver says ... it's way better than the alternative. gotta keep the misses happy too if you know what I mean. y aahay ahay ah ay aha

[Hidden in reply to Kaliber]

I am jello... I’m a newlywed in search of the holey grail of how to keep the wife happy . Part of the frustration associated with castration sweeping the nation .We live like this . Ain’t no fix .. pluck the day or it will pluck you ..

[Myhubby58]

Myhubby58 is on lupron indefinitely.He was diagnosed in July 2017,stage4 prostate and metesis,lymph nodes.it had spread to lungs and liver,and always in pain on left side of his back and legs.He is about to do second round of taxotere on Monday.His Psa is 98.9

[Hidden in reply to Myhubby58]

🙏

[TNCanuck in reply to Myhubby58]

Hi, it looks like you all have experience with Taxotere, but if you think some tips on avoiding side effects might be helpful, search this site. There's an extensive list. Wishing you and hubby the best.

[Myhubby58 in reply to TNCanuck]

Wow thank you

[Myhubby58 in reply to Myhubby58]

I have a question. Myhubby58 was diagnosed in 2017,and it was stage4 at the time and spread all throughout his bones and body..yet lm reading that there is only a life expectancy of 5years..Myhubby58 asked the oncologist,if he didn’t take the taxotere chemotherapy how long did he have. And he said less than a year?This is frightening, I don’t want to loose Myhubby58,yet I don’t want to be selfish either..he is now still in pain every day and taking morphine,flexerill,OxyContin,oxycoden,and Psa is 92.and he is about treatment #4 of taxotere..

[Myhubby58 in reply to Myhubby58]

Plus he is still on lupron and xtega, for his bones..

[larry_dammit]

Time to see a oncologist, your playing with your life here, lost my father in law because he stayed with his urologist to long

[dac500 in reply to larry_dammit]

I am seeing an oncologist

[larry_dammit in reply to dac500]

Sorry didn’t read that, My friend and urologist blew it on my cancer so I’m a little bullet shy now

[Hidden in reply to larry_dammit]

😫

[Hawk56]

I was diagnosed in Jan 14, surgery in Mar 14, T2CNoMx, 10% prostate involvement, margins, ECE and SV negative, GS8. BCR in Sep 15, did SRT in Mar 16 which failed, when PSADT and PSAV were less then three months we went to Mayo in Jan 17 and had the C11 Choline scan, four pelvic lymph nodes. We did 18 months of Lupron, six cycles of taxotere and 25 more radiation treatments. PSA dropped to <.1 from 4.8 in the first month and T to <3, both stayed there.

Last Lupron was May 18. Since then:

Aug <.1 T <7

Oct <.1 T 135

Feb .36 T 482

.24

Apr .05

Jun. .12

Aug. .06

I definitely feel better with T climbing back to the 400s.

If you decide to take a break, have an active monitoring plan, we have labs every 6-8 weeks. Have decision points for when and with what you will image and when you go back on treatment.

Those decision points for us are:

Image between PSA 1-2 if using Aximun scan, less if able to use PMSA scan now in CTs here in the US.

Go back on treatment when PSA is between 2-4, likely systemic therapy though results of imaging may serve to guide treatment modalities.

Part of my decision to take a break is data showing that rapid responses in PSA and T <20 May indicate more durable responses and longer PFS period.

Good luck with your decision.

[j-o-h-n]

I vote, staying on meds... but I don't wear a white coat even though I look handsome in one.

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/06/2019 6:40 PM DST

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

It’s those guys out in your hallway that wear the white coats ... and have that net ...

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

Oh no... don't say that..... I've met them before.... and the white coats had long sleeves and chains...

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 09/06/2019 9:59 PM DST

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

Yayahahaha.... yea those out in the hall ... the one’s here on our couches have a black robe with hood and bones sticking out ..... mine impatiently reads the newspaper... not much of a talker either yayahahaha Hope mine brought its lunch pail .... I’m not going I going anywhere for a while.

We got this 💪💪💪💪

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

And a Dude like you ain't going nowhere....

youtube.com/watch?v=I_izvAb...(Not working as expected?)

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 09/07/2019 10:03 PM DST

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

Lol

[Shanti1]

My husband's post RP PSA was 5 with mets to multiple lymph nodes, lung and 1 in the sacrum He started ADT + Zytiga and PSA dropped to <0.006 and stayed there for a year. Testosterone was <3. Side effects were so bad for my husband he was basically non-functional that year, so we took a break. He has been off all meds for over a year and PSA is just starting to show at 0.051. Our oncologist advised us to not take a break as there is no data with IADT and zytiga, but he recognized the QOL issue and supported the ADT/Zytiga holiday for that reason. PSA of 1 is when he wants my husband to start androgen deprivation again.