PC treatment question: All, At 52 I... - Advanced Prostate...

Advanced Prostate Cancer

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PC treatment question

brokenyoyo profile image

All,

At 52 I was diagnosed with PC, had a RP done, Gleason 9, no mets. Urologist prescribed Eligard every 6 months for 2 years followed by 6 month vacation and then repeat once psa climbed above non detect. Then at 61, innumerable lesions were found in my lungs (not in bones) and biopsy confirmed as PC. Referred to West MI Cancer and Hematology Center, MO Sreenivasa Chandana, who prescribed 120 mg Xtandi daily and Lupron injections every 3 months. Quarterly CT and psa tests confirm the disease stopped growing (still castrate resistant), and I'm told nothing else can/should be done until it until it starts growing again. Does this treatment approach sound plausible and/or acceptable? Should I be seeking a second opinion? I'm feeling good, mostly just tired from drug side effects, working a fairly physical job.

Thanks in advance for any feedback you all may have!

Joe Mason

31 Replies

You're still using Lupron, right?

Thanks for your reply Tall Allen. Yes, still getting the Lupron injection every 3 months. It's called something else, but same formulation I'm told.

If Xtandi is no longer working, you can wait for signal that the cancer is active before doing docetaxel.

Thanks, that helps!

TommyCarz profile image
TommyCarz in reply to Tall_Allen

How much time can we buy with docetaxel once zytiga and xtandi have failed

I was 53 when I got my diagnosis for PC, stage 3b, and got RP. Though margins were clear, PSA was detected in first test after surgery. It took about another 2.5 years before PSA got high enough to warrant radiation treatment. Then I got a Lupron injection then waited about 3 months, and then got radiation treatment. It's been almost 5 years after that and PSA has so far been undetected. My radiation oncologist after my treatment said, if it comes back again, then I'd get hormone therapy.

In your case, it sounds like PSA was undetected after RP, and then when you had a biochemical recurrence (PSA was detected) they went straight to chemo and Lupron. I am wondering why they did that without first doing radiation, as they did for me. Sorry if this is a dumb question. I recently joined this site when I became caregiver for my dad.

brokenyoyo profile image
brokenyoyo in reply to Green_Guy

All good Green Guy, thanks! Your scenario sounds similar to mine in that I failed to mention I had radiation after RP, due to the high Gleason score. The cancer had clearly escaped my prostate. Appreciate the information!

Green_Guy profile image
Green_Guy in reply to brokenyoyo

Gotcha. Makes more sense to me then. Good luck!

I became castrate resistant after about 11 years on Lupron intermittently. Almost 2 years ago and went on Xtandi 120 mg which after learning to deal with side effects has been good. I have control of side effects of constipation, increased blood pressure and sleeping problems. My Cardiologist got me a Cpap which combined with other good sleep habits worked for my insomnia. Metamucil and laxative fixed my constipation. Medication change fixed my blood pressure. I am 80 and at the start of the Xtandi I chose to have my testicles removed so I would not have to take the Lupron shots which I hated. I also had a penile prosthesis implant which solved my erection problems as well other problems that would have developed over time. I have my PSA and testosterone checked every 3 months with body scans and bone density every year. So far all is well.

Green_Guy profile image
Green_Guy in reply to jbskiatook

I asked my radiation onc what would happen if PC came back after radiation, and he said I would go on Lupron and that would give me about another 7 years before it would spread to my bones and spine and then I'd be gone. So you have done better than that. At the time I thought, well, I'd take 7 years. I could do a lot in 7 years.

jbskiatook profile image
jbskiatook in reply to Green_Guy

After 7 years I became castrate resistant. I went on Xtandi plus I also had my testicles removed and penial inplant put it in. I expect to get at least another 7 years out of Xtandi then there will be something else available to take. I would have had my testicles removed from the gitgo if I had known what was going to happen during that 11 years on Lupton. I hated the Lupton shots and had several elections problems the last few years.

Xtandi + Lupron worked well for me. 2014 presented with Stage 4 PC with bone mets. Gleason 5+4 (9). That's all I had (plus Xgeva for my bones). They said 5 years and I'm well beyond that. After Xtandi stopped working and my PSA got above 2.0 I did Provenge and tried Xtandi again after but PSA started rising so just started docetaxel.

I'll be 73 at the end of May. I hated taking Lupron and finally last year had the boys removed (they were completely atrophied) so I could stop taking it.

NOTE: after castration side effects (hot flashes, etc.) were still there, fed by the Xtandi. Now that I'm off both all that is going away. Now I just have to deal with chemo side effects.

Oh, and a second opinion is never out of place and it looks like you've now got several. But if you want (and can afford) to travel to Mayo in MN then you have the opinion of the "big boys." Just don't be surprised if they say the same thing, although they might have a clinical trial to suggest.

And I'm sure Tall Allen would agree that while it's always a good idea to have your final arrangements taken care of (LOOK OUT FOR THAT BUS), it's not time to be polishing your headstone.

Green_Guy profile image
Green_Guy in reply to Miccoman

Congrats. And it sounds like you have some wisdom going there.

Lungs? Here I go again....... My lung melanoma treated with Keytruda and it worked.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 05/10/2022 1:18 PM DST

brokenyoyo profile image
brokenyoyo in reply to j-o-h-n

Wow, thanks for all the good information guys. I appreciate it more than you know.

Green_Guy profile image
Green_Guy in reply to j-o-h-n

Wait. You had LC too?

j-o-h-n profile image
j-o-h-n in reply to Green_Guy

Lung melanoma........ okay now with Keytruda....

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 05/10/2022 10:03 PM DST

Green_Guy profile image
Green_Guy in reply to j-o-h-n

how long ago was that?

j-o-h-n profile image
j-o-h-n in reply to Green_Guy

YOU ASKED (lung melanoma):

Number 1 treatment with KEYTRUDA on Tuesday 02/07/2017

Number 2 treatment with KEYTRUDA on Tuesday 02/28/2017.

*Took CT body scan on Thursday, 04/06/2017

Number 3 treatment with KEYTRUDA on Tuesday 04/21/2017. (SKIPPED!)

Dr. said that my recent C.T. scan (04/06/2017) showed that the nodule on my left lung decreased in size.

Lungs: Decreased lower lobe metastasis:

Now 1.2 x 1.0 cm. previously 2.4 x 2.2 cm.

Pleura/pericardium: Resolved small left pleural effusion.

Number 3 treatment with KEYTRUDA on Tuesday 04/11/2017.

Number 4 treatment with KEYTRUDA on Tuesday 05/02/2017.

Number 5 treatment with KEYTRUDA on Tuesday 05/23/2017.

Number 6 treatment with KEYTRUDA on Tuesday 06/13/2017.

Number 7 treatment with KEYTRUDA on Thursday 07/06/2017.

*Took CT body scan on Tuesday, 07/18/2017.

Dr. said that my recent C.T. scan (07/18/2017) showed that the nodule on my left lung decreased in size.

Lungs: Decreased left lower lobe metastasis:

Measuring now 0.6 x 0.6 cm. previously 1.2 x 1.0 cm.

No new suspicious lung nodules.

Pleura/pericardium: No effusion.

Number 8 treatment with KEYTRUDA on Tuesday 07/25/2017.

Number 9 treatment with KEYTRUDA on Tuesday 08/15/2017.

Number 10 treatment with KEYTRUDA on Tuesday 09/05/2017.

Number 11 treatment with KEYTRUDA on Tuesday 09/26/2017.

Number 12 treatment with KEYTRUDA on Tuesday 10/17/2017.

*Took CT body scan on Monday, 10/30/2017.

Number 13 treatment with KEYTRUDA on Tuesday 11/07/2017.

Dr. said that my recent C.T. scan (10/30/2017) showed that the nodule on my left lung stayed the same size and that was a good sign.

Number 14 treatment with KEYTRUDA on Wednesday 11/29/2017.

Number 15 treatment with KEYTRUDA on Wednesday 12/20/2017.

Number 16 treatment with KEYTRUDA on Wednesday 01/10/2018.

*Took CT body scan on Friday, 01/26/2018.

I met with Dr on Wednesday, 01/31/2018 and based upon my CT Scan of 01/26/2018 he said that I do not need any more treatments for 3 months since my scan showed the following

LUNGS/AIRWAYS: Further decreased residual ill-defined left lower lobe metastasis, barely perceptible. No new suspicious nodules. Schedule for a CT Scan on 04/24/2018 and a consultation with Dr. on Tuesday, 05/01/2018.

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 05/10/2022 10:17 PM DST

Green_Guy profile image
Green_Guy in reply to j-o-h-n

Thanks for that detailed report. That's way more than what I expected. I guess that you've been clean since that last check in 2018, which is fantastic.

j-o-h-n profile image
j-o-h-n in reply to Green_Guy

Yes it is fantastic inasmuch as the "surgeon" was going to invade my body and treat those fcuking suckers..... If you know of anyone who has Lung cancer tell them about Keytruda..... BTW nice to see you posting.....Regards

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 05/11/2022 2:15 PM DST

That’s exactly the treatment plan I had. I started getting 6-month Lupron shot and take Xtandi 160mg daily.

BTW When I was a kid I had a broken yoyo which would go down but never up. I named it my brokenyo.......

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 05/10/2022 7:02 PM DST

Green_Guy profile image
Green_Guy in reply to j-o-h-n

I see that you haven't lost your sense of humor yet, John.

j-o-h-n profile image
j-o-h-n in reply to Green_Guy

I try, I try.........

Good Luck, Good Health and Good Humor.

j-o-h-n Tuesday 05/10/2022 10:05 PM DST

brokenyoyo profile image
brokenyoyo in reply to j-o-h-n

Ha! I was in a band Brokenyoyo, named after a blues song about a guy's less than successful love life. Go figure...

j-o-h-n profile image
j-o-h-n in reply to brokenyoyo

Now don't tell me... you played "a string" instrument......... if so, I think I'll kill myself......

Good Luck, Good Health and Good Humor.

j-o-h-n Wednesday 05/11/2022 2:07 PM DST

brokenyoyo profile image
brokenyoyo in reply to j-o-h-n

No, trombone😉

j-o-h-n profile image
j-o-h-n in reply to brokenyoyo

When I was a teenager I practiced playing a trombone for about 6 months and when I found out I was supposed to blow into it..... I gave it up.....

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 05/12/2022 2:23 PM DST

Your post says still castrate resistant. But your bio says castrate sensitive. Please clarify.

brokenyoyo profile image
brokenyoyo in reply to Gearhead

Sorry Gearhead, I find this specific castrate reference confusing at times and may have mixed the terms. I meant to indicate the PC still responds to hormone treatment.

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