Helpful group

[Jeffdanger]

Hello All,

This group has been very helpful in providing information and suggestions on PC. I was diagnosed in Sept. 23 as Stage 4, Gleason 7 with all core samples testing positive and one met to the sacrum. Just completed 28 rounds of IMRT and have been on Lupron, Xtandi and Zometa for the last two months. PSA at diagnosis was 26 and first blood work after Lupron and Xtandi PSA was down to 3.6. Testosterone was down to 4. Second blood test due in two weeks. So far no bad side effects except for occasional hot flashes which are brief but it looks like things are trending in the right direction. First round of Zometa was rough with 102 fever and body aches for two days but hydrated better for second round and got through it ok.

Its great to have a group like this as a support and the information is invaluable. Anyone who had the same therapy I'm just wondering how it went for you. I'm 70 so getting another 8-10 years would be great as long as QOL is good.

Thanks to everyone who posts here and keep up the good fight. My urologist said if he gets any type of cancer he hopes it's PC because of it's treatability. He thinks I'm in a pretty good place right now with a decent outcome expected.

[Darryl Partner]

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[Tall_Allen]

Why is he taking Zometa? What was his T-score on his DXA scan (bone mineral density)?

[Jeffdanger in reply to Tall_Allen]

I didn't have a Dexa scan but MO said this was a preventative since I had a bone met.

[Tall_Allen in reply to Jeffdanger]

Really bad idea. Zometa has cumulative side effects that can be bad. It should be taken when needed. If you haven't had a DXA scan, find a new MO.

[Jeffdanger in reply to Tall_Allen]

This is from the NIH:

Many patients with advanced cancer experience decreased bone strength due to metastatic foci, underlying osteoporosis and/or cancer treatment induced bone loss. The clinical consequences of metastatic disease involving the skeleton are widespread. This review focuses on the efficacy, pharmacology, and safety when using intravenous biphosphonate such a zoledronic acid for cancer bone metastases. Zoledronic acid is the gold standard for the medical management of metastatic bone disease. The indications for treatment include prevention of skeletal relevant events (SRE), osteoporotic complications, and palliation of bone pain, among others. Zoledronic acid is the only bisphosphonate effective in decreasing SREs associated with bone metastases from advanced renal cell carcinoma and prostate cancer. Regarding prostate cancer, zoledronic acid effectively prevents both bone loss in patients with locally advanced disease receiving androgen deprivation therapy and SREs in men with hormone-refractory or hormone-sensitive metastatic disease. Zoledronic acid has an acceptable safety profile and tolerability, and has been effective at significantly decreasing the incidence, delaying the onset, and reducing the overall risk of experiencing an SRE compared to placebo. It is the only bisphosphonate currently approved for the prevention and treatment of skeletal complications in patients with bone metastases due to all solid tumors.

I take it you are not in agreement with this assessment?

[Tall_Allen in reply to Jeffdanger]

You seem to be misinterpreting that. it says, "Many patients with advanced cancer experience decreased bone strength due to metastatic foci [note plural], underlying osteoporosis [from a DXA scan] and/or cancer treatment induced bone loss [on scans]. "

Zometa is only approved for castration-resistant men. "Zoledronic acid is an established adjunctive treatment and bone-targeted therapy for the supportive care of men with metastatic castration-resistant prostate cancer. Efforts to study its utility in earlier phases of metastatic hormone-sensitive prostate cancer has not shown superior outcomes compared with standard androgen deprivation therapy (ADT) or docetaxel alone.

tandfonline.com/doi/full/10...

There may be cases where there are so many metastatic foci or pre-existing osteoporosis where it is necessary to begin it earlier. You clearly do not fall into those categories.

[Jeffdanger in reply to Tall_Allen]

I appreciate your insight and will discuss with my MO before my next infusion due in two weeks. I really hate getting this infusion and would be glad to stop it.

[maley2711 in reply to Tall_Allen]

If one is osteopenic ( T - 1.9) and Frax risk 13% Major fracture and 7% hip fracture over next 10 years, and starting ADT with RT or ADT alone for metastatic, the guideline ? BTW, DXA done only because I asked? Medical negligence?

[dhccpa in reply to maley2711]

Same here. One year into Lupron. And I don't have osteo, although I only get a quarterly shot. Took a year break June 22-23.

[Tall_Allen in reply to maley2711]

Good to get baseline because many men are starting with osteopenia. It is only approved for mCRPC.

[HikerWife in reply to Jeffdanger]

We asked our local MO here in RI, our Dana-Farber MO in Boston, and our pcp about taking bone meds prophylactically, as you are, b/c I had read about some men being precribed them as soon as they go on ADT. We were told by *everyone* this is not a good idea b/c bone meds themselves can cause big problems, and that it's best to wait until DEXA scan shows the need.

[Jeffdanger in reply to HikerWife]

Thank you, I will be discussing on my next visit. Not sure why a DEXA scan was not ordered but I'm going to find out.

[dhccpa in reply to Jeffdanger]

Still at a urologist? Might be time to move to an MO quickly. Not that all of them know cutting edge treatment.

[Jeffdanger in reply to dhccpa]

I see both, urologist and MO. MO started the Zometa, Xtandi and Lupron. I asked about triple treatment with chemo he said Stampede trial doesn't recommend.

[maley2711 in reply to HikerWife]

Did any of those Docs discuss what DEXA result would show the need? I'm too close to osteoporosis classification to be comfortable. ,,,and afraid ADT will result in osteoporotic classification. Apparently there are no bone strengthenrs that don't have substantial risks of harm.

[HikerWife in reply to maley2711]

No, I'm sorry. We didn't ask for specific numbers.

[MoonRocket]

You will probably need your PCP to order the DEXA scan. It's covered every 2 years so probably a good time to get one. I've had 2 so far and BMD has been stable for me...even after 2 years of ADT + Abiraterone Acetate (zytiga).

[maley2711 in reply to MoonRocket]

Stable at a good "normal" BMD?

[MoonRocket in reply to maley2711]

Yes. Normal BMD.

[NecessarilySo]

I had similar G7 and radiation but no Lupron until almost four years after RT. PSA was 10. I'm still here after 15 years, after intermittent Lupron, continuous for past 4 years. My PSA is .06 lately. I'm 78 now.

[Jeffdanger]

Thanks for all who replied with great input. Saw MO today and he agreed, Zometa not needed right now and ordered Dexa scan to establish a baseline. Says he only started Zometa because I had one met to the bone but agreed with the rational that if blood work and Dexa are good there's no need for it at this point.

[Jeffdanger]

Many thanks to Tall_Allen and everyone in this group for their input. I had the Dexa scan two days ago and results are good. 3.1 for lumbar spine and .3 for left and right femoral necks indicating I don't have any issues at all with bone loss hence Zometa is definitely not needed! Probably would have continued treatments and potential problems if not for this group.