It's Back...

[Hawk56]

Well, all good things come to an end...

I completed 18 months of Lupron in May 17. August labs still had T at <3, PSA undetectable at <.1. Not unexpected since the May Lupron shot was my sixth 90 day shot.

Labs in October had T at 135, PSA still undetectable at <.1

Had labs on 2 Feb ahead of my 20 Feb consult with my urologist, T now at 481, alas PSA at .36 using UPSA test. I was definitely feeling better at that T level, hot flashes, fatigue and muscle and joint stiffness improved greatly!

I asked my urologist to repeat the UPSA to confirm, did that on 16 Feb, PSA .3

So, clearly PCa is back. Given the clinical history of my PCa it will be interesting to see how it progresses. With GS 8, BCR only 18 months after a very successful surgery, failure of SRT and then with PSA and PSADT < 3 months I started 18 months of ADT, six cycles of taxotere and 25 more radiation treatments after the C11 Choline scan at Mayo found four pelvic lymph nodes with PCa. The goal of that combined regimen was to gain a long progression free survival period, yet in reality, six months after the ADT cleared the system, it's back.

Most likely we will have several more labs to determine PSA progression, PSADT and PSAV, may image here in Kansas City using the Aximun scan and at some point go back on treatment.

Having missed the elusive cure we shift to the whack a mole strategy, shorten the management window to 3-5 years and treat this like a chronic disease.

[Cmdrdata]

My situation is similar to your and perhaps many others. At Gleason 8, I suspect that the PC cells are lurking elsewhere and until such time that our immune system can recognize this DNA mutation and kill it, we will still be in a “whack a mole” mode. My own PSA kept responding to T-suppression until the beast learn how to overcome that. Try switching from Lupron to Firmagon and see if that helped. Eventually, I became CRPC, and at that point I moved on to other androgen receptor antagonists, e.g., Zytiga or Xtandi. Have had chemo, many different scans except PSMA. When all the above drugs stop working, hopefully they will be able to detect a localized met for biopsy, so I can try immunotherapy drug that are tailored for my DNA variant. As my friend in this group said, “Keep fighting the bastard/beast”, while always weighting for the balance of QoL, vs longevity.

[EricE in reply to Cmdrdata]

I'm warming up in the bullpen but I'm in the same boat. Best of luck.

[Tall_Allen]

Will your insurance cover Zytiga or Xtandi?

[Hawk56 in reply to Tall_Allen]

We shall see, it’s TRICARE, I served 22 years in the Army, so far it’s covered everything.

[Shooter1 in reply to Hawk56]

Thank you for your service. As disabled vet myself Veterans choice and VA Pharmacy have covered all my drugs and drs (same ones) since I retired.

[spouse21 in reply to Shooter1]

Shooter, did the VA cover Zytiga? My husband has just gone through an incredible rigamarole with the VA which, in the end, denied Zytiga coverage despite a recurrence in his cancer. It delayed this much needed drug by over a month.

[Shooter1 in reply to spouse21]

Went with Xtandi instead and no problem with coverage.

[spouse21 in reply to Shooter1]

Thanks, Shooter.

[Break60]

Psa started to rise after you stopped ADT. Just like mine did .... three times. So why not just get a scan when Psa reaches 2.0 then go back on ADT like I did?

[Hawk56 in reply to Break60]

That’s the most likely plan, meeting with my urologist this morning to discuss

[Hidden]

I’m sorry Hawk56 . It’s BS ...boy , having T sounds good , don’t know I’ll ever have it again . I’m also 3 t for over 3 yrs . APC is life on the edge .. Even with a temp,clear status . The beast lurks within . With mayo you’ve had the best care. Maybe adt again will push it down .. good luck

[Hawk56 in reply to Hidden]

Met with my urologist today, UPSA on 2 Feb was .36, we repeated the test on 16 Feb, that came back at .24, used the same lab...

Clearly the PCa is back, question is is it aggressive...?

We agreed to do labs on 2 April and meet again on the 10th of April to review and discuss.

We did discuss treatment should the PSA rise rapidly, most likely scan using the Aximun here in Kansas City, go back on Lupron, possibly add Zytiga and consider stereo tactic radiation if the scan identifies the site(s) of recurrence.

For now, the Lupron holiday continues and all its "benefits!"

Kevin

[Hidden in reply to Hawk56]

Everything is a trade off...that’s for sure . Good luck .

[tallguy2]

I do not understand the benefit of these “Lupron Holidays.” I too was off ADT for about 2 years. Guess what? Same thing happened to me. T up, PSA developed rapid doubling time from<o.2 to 4+, and mets were discovered.

[Hawk56 in reply to tallguy2]

So in my case there were studies which said no benefits of ADT beyond 18 months, my medical team and I agreed to stop Lupron at 18 months and then monitor every three months. We also agreed in my meeting today not to let the PSA go above 2.0 before resuming treatment. I think the key is to have an active monitoring plan and a trigger to start treatment back up.

Part of my rationale was to reduce the risk of becoming resistant to Lupron.

[tallguy2 in reply to Hawk56]

Thank you. My urologist also told be that intermittent ADT can be beneficial in delaying crPCA; I think he also wanted to try to give me some more energy and "libido."

[JimVanHorn]

So far I am cancer free. I used Eligard for 6 1/2 years with radiation (72) and it has been 9 months since I have had therapy.

[Hawk56 in reply to JimVanHorn]

Good to hear, long may it continue!

[SsgCulldelight]

Yup, I've been on lupron coming up on 11 years, it's a given I haven't given the disease much energy, and besides the side effect issue I've been good, undetectable all along so. You beat it bro but ya gotta believe that too, don't accept no defeats every day is a win.