55 and technically stage 4 PC

[Hohman]

Hi, I am 55 and have had prostatectomy almost 2 years ago with 37 radiation beams..PSA was 0.9...then began rising 2.5..bone scan showed Mestasis to hip...started Lupron 3 months ago...PSA is now undetectable..should I be asking to aggressively treat with anything else?

[Kevinski65]

You have a full plate with Lupron. It works for about 3 years. When you become resistant they add Xtandi or Zytiga. KEVIN

[Hohman in reply to Kevinski65]

Thanks Kevin...I continue to have a positive outlook....i didn't know about the approx 3 yr response...I will continue to educate myself. I did ask about Provenge but was told that they usually consider that if it gets castrate resistant

[Tjc1 in reply to Hohman]

Heck i got 7 1/2 years on lupron. You might too or even longer. Some say hit it hard with chemo at the same time. Personaly i like having exra ammo in my arsenal for later.

[Hidden in reply to Tjc1]

Yep, I got more than 10 years on lupron, everyone is effected differently.

[CalBear74 in reply to Hohman]

I will complete my sixth year on Lupron this fall. Some patients have gone more than 14 years on Lupron, though admittedly it is not common. By the way, I am in Tjc1's camp.

[Hidden]

If I were in your shoes I would find an oncologist who specializes in prostate cancer and discuss treatment options. You have proven choices/treatments you can pursue at this point. You might want to Google the Chaarted and Stampede trials.

[tallguy2 in reply to Hidden]

Bill48162,

I agree. Hohman doesn't say what his Gleason Score was. Mine was nine, same treatment as Hohman. Went on Lupron holiday and a chance MRI found abnormal lymph nodes. With bone mets I wasn't through with ADT but jumped right into Taxotere.

Hohman should consult with A mo asap.

[Hidden in reply to tallguy2]

You are giving yourself the best chances.

[Hohman in reply to tallguy2]

My Gleason score was a 7 but the scans showed a spot the size of a quarter at my Hip...it was all ordered by my MO...thanks

[Hidden]

I was 59 at diagnosis, also diagnosed at stage 4 and went for the more aggressive approach. After one month of ADT Lupron, I started 6 cycles of Docetaxel chemotherapy in accordance with the STAMPEDE trial. The results of that trial showed a significant improvement in overall survival when early chemotherapy is done along side primary ADT. Here's a video about it:

vimeo.com/149626704

With the addition of chemotherapy, I was completely pain free for the first time with a PSA nadir of .19. After I started chemotherapy, the Zytiga arm of the STAMPEDE trial results were announced. They showed an equal improvement for those using Zytiga early on in treatament along with ADT. Another trial called LATITUDE showed similar results.

So if you want to go "aggressive" with your treatment, there are two proven options. I still prefer chemotherapy because it goes after all the cancer, not just the hormone sensitive. The side effects are quite tolerable for most and they are over in 18 weeks.

The CHAARTED trial analyzed the patients with low volume disease vs. high volume disease and while there was a satistically significant difference in trhe high volume group, there was not in the low volume group.

You can discuss this all with your doctor since I am not a doctor. Good luck with your treatment.

[Break60 in reply to Hidden]

Gregg

After chemo was finished were all side effects gone? Could you continue normal activities during treatment like working out or other strenuous activities?

Bob

[Hidden in reply to Break60]

I was doing quite a bit, even during chemo. The first 5 days after infusion were low activity because of the side effects, but I still managed to do quite a bit of acitivity. I even walked 1 or even 2 miles during some of those days. The second and third weeks after my infusion were pretty much normal. With each cycle, those weeks got better as the chemo went on and my PSA kept going down until it got down under .2. At the end of my second cycle, I did a 4 night astronomy event and was up almost every night until 3:30 or even 4 with lots of energy. The only lingering side effects for me were watery eyes and some fluid retention in my ankes and lower legs. I know the 100 degree heat here wasn't helping that, but after a couple months it was back to normal. My doctor had me on 10mg of Prednisone which really helps with the side effects, especially the first week. I would generally stop taking it after the first week and then start again right before the next infusion.

[tallguy2 in reply to Hidden]

I agree! I am swimming vigorous laps 4X/ wk with 3 down, three to go on Taxotere. Fatigue for first 7 days is "tolerable." Hair loss...who cars (for guys).

Go for it.

[Tall_Allen]

The STAMPEDE/Zytiga study was mostly for newly diagnosed men but did include about 100 patients who were recurrent, like yourself. For them, there was no benefit in terms of survival in just the 40 months of follow-up. There was a benefit in progression-free survival at that time point, but whether it will translate into prolonged survival eventually is still unknown. In CHAARTED, early chemo improved survival in men with many metastases, but not in men with few. It is controversial whether it is a good idea in recurrent men with few mets. I personally doubt it, but it's just a guess on my part.

[Break60 in reply to Tall_Allen]

TA

Are you saying that chemo is not effective for recurrent PCa?

Bob

[Tall_Allen in reply to Break60]

In the CHAARTED trial, there was no significant increase in survival among men who had a low burden of metastases. This held true even when they observed the men over a longer time frame:

ascopubs.org/doi/abs/10.120...

Now, this was among newly diagnosed men, not recurrent men, but I would not expect it to be any more useful among ANY hormone-sensitive men with low volume mets. There may be a stage of progression when docetaxel becomes more effective.

[Break60 in reply to Tall_Allen]

I may not be hormone sensitive as my PSA increased from .16 to .31 while on ADT3. I’ll get tested again on 6/30 and am looking into participating in a clinical trial to determine the efficacy of GA PSMA 68 CT PET in visualizing metastasis.

Bob

[Tall_Allen in reply to Break60]

They generally like to see an increase above 2.0 and radiological evidence of progression before deeming it castration resistant. The clinical trial allows men who are on hormone therapy?

[Break60 in reply to Tall_Allen]

Seems to be the case :

At MSKCC: NCT03204123

At UCSF: NCT03353740

At Case Comp. CC: NCT 02978586

[Tall_Allen in reply to Break60]

Let me know if any accept you.

[Break60 in reply to Tall_Allen]

TA

Actually I’m off ADT as of 6/30 as last 3 mo trelstar shot was 3/30. I stopped bicalutamide a few weeks ago but will stay on avodart.

[Tall_Allen in reply to Break60]

I think they want men who are newly recurrent and haven't yet had any distant mets (M0) or salvage hormone therapy. But I may be wrong. If you can't get into those trials, you may be able to qualify for the ORIOLE trial at Johns Hopkins:

pcnrv.blogspot.com/2017/07/...

You would have to be ADT-free for at least 6 months.

[Break60 in reply to Tall_Allen]

TA

I got a tentative positive reply yesterday from UCSF. I sent all of them my treatment history. Should hear from Cleveland tomorrow. MSK hasn’t replied yet. I find them to not be customer friendly. I was turned down by ORIOLE last year when I went with axumin.

[Tall_Allen in reply to Break60]

Good to know - I hope you get in.

[wa64hoos]

What brought you in for the checkup

that gave the diagnosis two years ago?

Was it psa from your GP? Dre exam?

I'm being tested now.

[Hohman in reply to wa64hoos]

For me it was a change in stream flow of urine and the dissappearance of Semen at Climax. Was PDA tested at that point it was a 65...the following week a second test was 69...then biopsy showed PC

[Hohman in reply to wa64hoos]

I then decided to go with prostatectomy...and after 1 month...still 1.5...then 1.1...Urologist suggested radiation.....37 rounds took it to 0.9.....6 months later it started doubling 2.5...then Scan showed metastatic to lower hip. Lupron was started 3 mos ago..now undetectable PSA

[Baldy123 in reply to wa64hoos]

I like that name. You from Va?

[wa64hoos in reply to Baldy123]

Yes, went to UVA. It sounds like you

did also.

[tarhoosier]

That canard of three years of hormone sensitivity has long been debunked. For men with no or few mets and who respond well to the therapy, such as you, the expected durability is far longer than three years.

Here is a very early test of lupron for men diagnosed with mets and with symptoms, in other words far more advanced than you. For minimal symptomatic men duration was 55 months. This was long ago with no other tools. Note injections were DAILY at that time:

Leuprolide With and Without Flutamide in Advanced Prostate Cancer,

E David Crawford. Trial started 1985, accrued 1986.

Progression free survival median was 8.5 months in greatest disease, 17 months in mid level disease group, and 55 months in minimal disease (minimal, mid and severe symptoms). 1 mg/day, daily dosing. (Current is 7.5/month)

-----------------------------------------

Another early study to determine duration showed that response to treatment was prognostic. Those who went to psa of 0.1 had 80% of subjects responding at nearly 8 years out.

ncbi.nlm.nih.gov/pubmed/751...

Early androgen ablation for stage D1 (N1 to N3, M0) prostate cancer: prognostic variables and outcome.

G. K. Zagars, 1994

[Break60]

Gregg

Thanks. Thus far I’ve been oligometastatic and certainly hope that remains the case as long as possible ! So I’ll do second line HT and, if recommended, SBRT.

Bob

[Hohman]

I have a MO and an RO and Urologist from UPMC Hillman Cancer Center...thank you

[Hohman]

Promising...thank you very much....gives me hope

[Hidden]

Lupron works or doesn't work differently for all men. I was on ADT4 (Lupron, Casodex, Avodart, Cabergoline) for five years. Had Provenge in 2014. Stopped Lupron in 2016 but continued with half doses of Nilutamide, Avodart, and Cabergoline. Current PSA <0.1.

I recommend this site:

theprostateadvocate.com/obs...

Good Luck!

[Hidden]

Do not fear chemo! Almost all side effects are manageable. It worked for me. Consider attacking the metastatic cancer while your body is strong and the tumor burden is minimal versus waiting until your body is weakened and the tumor burden is invasive.

I wish you the best, many undetectables, and a long life.

Gourd Dancer

[Hohman in reply to Hidden]

Thanks for the input...always appreciated. I dont fear Chemo if that's what it takes..it hasn't been suggested yet...my DRs suggested that the metastasis has most likely dissolved? I have been undetectable a little over a year...of course I dont know how they would know that without a scan?

[Hidden in reply to Hohman]

Excellent thus far. I would suggest that you research and read up on what they can’t see - micro-metastatis. Just be aware. Mays a good topic to discuss with them.

GD

[Hohman in reply to Hidden]

Will do for sure...thank you

[samahieb]

I felt like I was reading about myself...55 with mets on right hip..met with radiation oncologist yesterday and that's when I realized I was Stage 4...kinda hard to hear when you realize there's no Stage 5...by the same token..been at it 11 years...and the best years a man can have--watching his kids grow up....PSA has never gotten out of control after surgery and lupron/casodex/zytiga, but it's never really gone down either and cancer has found a place to hang out in my hip...I think I'm going for the SBRT...looks very promising...enough about me---hang in there my friend...it sounds like you have not done Zytiga yet, which could/should buy you some valuable time

[Hohman]

Thanks for sharing...wow 11 yrs is a good number to look forward to! I feel pretty good now! One can only hope it stays that way! Again thanks for sharing!