Update On My Metastatic Prostate Canc... - Advanced Prostate...

Advanced Prostate Cancer

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Update On My Metastatic Prostate Cancer

dac500 profile image
29 Replies

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?

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dac500 profile image
dac500
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29 Replies
Break60 profile image
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 profile image
Tall_Allen

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

dac500 profile image
dac500 in reply toTall_Allen

Yes some of them

Tall_Allen profile image
Tall_Allen in reply todac500

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

dac500 profile image
dac500 in reply toTall_Allen

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

Tall_Allen profile image
Tall_Allen in reply todac500

No.

TNCanuck profile image
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 profile image
Hirsch in reply toTNCanuck

Agree

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 profile image
Kaliber in reply to

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

in reply toKaliber

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 profile image
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

in reply toMyhubby58

🙏

TNCanuck profile image
TNCanuck in reply toMyhubby58

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 profile image
Myhubby58 in reply toTNCanuck

Wow thank you

Myhubby58 profile image
Myhubby58 in reply toMyhubby58

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 profile image
Myhubby58 in reply toMyhubby58

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

larry_dammit profile image
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 profile image
dac500 in reply tolarry_dammit

I am seeing an oncologist

larry_dammit profile image
larry_dammit in reply todac500

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

in reply tolarry_dammit

😫

Hawk56 profile image
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 profile image
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 profile image
Kaliber in reply toj-o-h-n

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

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

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 profile image
Kaliber in reply toj-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 profile image
j-o-h-n in reply toKaliber

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

youtube.com/watch?v=I_izvAb...

Good Luck, Good Health and Good Humor.

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

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

Lol

Shanti1 profile image
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.

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