Prolia/DEXA Update - Need Help!

[sjc2]

Husband was dx with aggressive PC July 2014 at age 57, had RP done Aug. 2014 with Total GS 7. Then Nov. 2015 had a BCR and received 6 months ADT along with 39 IMRT treatments. All good until Mar. 2017 when PSA rose a little and by Oct. 2017 confirmed BCR again with rapid doubling times. Finally had a PSA high enough for MO to ordered Axumin on 8/29/18 - results showed a small right pelvic lymph node, all else clear. Started ADT 9/4/18, then had Orchiectomy Jan. 2019. Currently have PSA <0.01 & Testosterone <1.0 and have been since Jan. 2019. All CT's and Bone Scans have always been clear, only thing that has shown up was the node on Axumin.

MO wanted to start Prolia without ever doing a DEXA, we said no until we know if his bones are thinning. MO said insurance won't cover DEXA for men and it wasn't SOC, but if we wanted to pay she would order it... we said yes, we want it! The DEXA is scheduled with his CT's and Bone scan for end of this June. His follow-up with MO for results is July 8 and MO has first Prolia shot scheduled for that visit.

Question is - If DEXA comes back normal, would you start the Prolia, as MO advises for "Bone Health"? We're aware of possible serious side effect to the jaw with these drugs and don't want to start it if his DEXA is good, but don't know if he needs it anyway due to his ADT's then Orchiectomy. DH is NOT castrate-resistant yet, if that makes a difference.

If DEXA is good and we wait, how do we know when to start it... when do you repeat a DEXA (I know for women it's done every 2 years)?

Thanks in advance for all your knowledge and opinions, they are a true blessing to us!

[Tall_Allen]

Did the salvage radiation include treatment of the pelvic lymph nodes?

In the US, DEXA is covered by most insurance for men on ADT. Why start it before he has to? Side effects (like osteonecrosis) increase over time, and what is the point if his bones are dense without it? Weight bearing exercise may increase his bone mineral density, so that he never needs it.

[sjc2 in reply to Tall_Allen]

The pelvic node was inside the area that was already treated with radiation and the RO said he could not radiate that same area, because it would cause damage.

Glad your thoughts are the same as ours, if it turns out his DEXA is normal, we didn’t see the need to start the Prolia. And yes I did find out that our insurance does cover it, so the MO shouldn’t have made that statement because it appears some insurance companies do cover it.

How often should he have the DEXA done?

[Tall_Allen in reply to sjc2]

Annually would catch any osteopenia. The X-ray dose is low.

[sjc2 in reply to Tall_Allen]

Great, thank you so much!!

[Schwah in reply to Tall_Allen]

TA, why not use Celebrex along with Zometa (for bones). Wasn’t that combination shown to reduce deaths by over 20%?

Schwah

[Tall_Allen in reply to Schwah]

That was only among men with distant metastases (M1)

[sjc2]

Great! Our thoughts exactly, but this is all new to us and since his MO wanted to start him on it without a DEXA scan first, we just weren’t sure if it was necessary and we just didn’t understand. Not sure why his MO thinks he should be on it for bone health.

How often should he have a DEXA, to know if his bones are still good? It appears we will have to request it, since his MO didn’t want to do it.

[JavaMan in reply to sjc2]

I just had a DEXA scan and they said the next one should be in two years. It looks like Tall Allen said one year above though. TA is a good go-to. I don’t know what drives the different recommendations.

[sjc2]

Would you happen to know the actual name of the test? And how often do you think it should be done?

[Mkeman in reply to sjc2]

If you have a DEXA you should receive a set of graphs and charts. Ask someone to walk you through them. There are two scores...one comparing you to your age group and one showing how you stack up against 30 year olds. Scores are based on standard deviations which can confuse you if not fully explained. Medicare will usually pay for one every two years. However, if you are taking prednisone, you can have them more often to measure what effect steroids are having on your spine.

[sjc2 in reply to Mkeman]

Thanks! He's not on Medicare yet, only 62 yrs old.

[craigpynn]

At my diagnosis of G8 T4N0M0 PCA in early 2009, my doc ordered a DEXA (as well as a nuclear bones scan). The DEXA revealed I had osteopenia. Since ADT was part of my Tx, he prescribed quarterly infusions of Zometa for 3 years. When Prolia (which is a lighter dose of Xgeva used when bone mets are present) became available, he switched me to that. I've had a DEXA every 2 years and my level of osteopenia continues to decrease, albeit at a slow rate. I’m now ten years out with no evidence of PCa, but I remain castrate (another story for another day). Given ADT's predilection to decrease bone mass, suggests that Zometa then Prolia has been a wise move for me, anyway.

I continue to receive a Prolia injection every 6 months and have experienced no noticeable SEs. However, my endocrinologist notes that there are no studies that indicate what are the long term or short term effects of stopping Prolia. He has recommended that I remain on Prolia until there are studies that demonstrate what effects do or don’t occur when discontinuing Prolia. In short, if you go on Prolia be prepared to stay on it for a long period.

If your DEXA does not indicate osteopenia or osteoporosis, you may want to give careful thought re Prolia even though ADT can have a deleterious effect on bone mass.

[sjc2 in reply to craigpynn]

Thank you so much for the info! Yes, that is our thoughts if the DEXA doesn't show any signs of thinning, then we will wait to start the Prolia. Hopefully his MO won't give us a hard time, since she wants to start him, but it's his body & "if it isn't broke, don't need to fix it"!! I would hope if the DEXA shows all is normal, she would change her mind about starting him anyway, even though she didn't think we needed to do a DEXA.

[j-o-h-n in reply to sjc2]

I'm Mr. Butinsky... "Hopefully his MO won't give us a hard time,"

I think you have this in reverse.... you're the one who supposed to give the MO a hard time. Just tell her you're the boss and she's the horse (and to get off her high horse). Geezamacripe your husband is the one who should be giving you a hard time not the doctor ("hard time" is in paragraph 4Q of the nuptial agreement).

Good Luck, Good Health and Good Humor.

j-o-h-n Friday 04/19/2019 4:57 PM DST

[VHRguy]

You might consider running your particulars through the FRAX calculator online. With a DEXA scan density reading it can give you a prediction of eventual fracture risk. If that is above some value, it may suggest countermeasures to be worth their risks. You could ask your doctor about it for more guidance. I've been getting a DEXA scan every 2 years.

sheffield.ac.uk/FRAX/tool.a...

I was on Prolia for about 3 years. It is specifically indicated for men undergoing ADT for prostate cancer treatment. A year or so after my ADT ended we stopped the Prolia too. I have osteopenia from my 3 years on ADT, but it seems stable at the moment, even recovered a few tenths on the T score. I take extra calcium and Vit D, and do weight-bearing exercise.

[sjc2 in reply to VHRguy]

Thank you very much for the info!!

[abmicro]

I use an estrogen patch for osteoporosis while under hormone therapy. Unfortunately my osteoporosis is severe so I had to start xgeva on top of that. I take aspirin daily as a blood thinner because estrodiol patch used long term will thicken your blood and increase risk of blood clots. estrodiol will enhance hormone therapy and further reduce testosterone. This female hormone will help the heart, joints, memory, take away hot flashes, and add a little sex drive on top of that. It was Dr Charles E Myers (now Retired) favorite trick to improve quality while on ADT. Include a good dose of Vit D and a little calcium.

Prolia and other bisphosphonates used long term use can actually cause fractures. I know because I got one after using Fosamax for 5 years. You must get all your dental work done before starting Prolia to reduce risk of osteonecrosis of the jaw. No reason to start Prolia early if you can use estrogen and natural ways to build bones. I also read on the forums that there may be a new drug better than prolia for bones. Also read on the forums that BORON supplements will help bones.

[51na1a in reply to abmicro]

Do you have more info on the "new drug" ? Is it Xgeva ?

[Break60 in reply to 51na1a]

Xgeva is a stronger version of prolia. I started it when I got my first bone met . Monthly shots. You buy from pharmacy, bring to urologist and He administers. Not cheap! I’ve reduced to quarterly shots since bone density scans were normal. Intensive resistance training done every other day.

[51na1a in reply to Break60]

Is Xgeva given in 6 month injections ?

Same horrific SE, I presume.

[Break60 in reply to 51na1a]

No side effects that I’m aware of. Maybe fatigue. Shots are normally administered monthly as I said. To decrease the strength I switched to quarterly. There is only one strength per dose as far as I know. So if you want less strength you spread out the shots. My urologist said it’s not at all unusual in his experience to administer it quarterly depending on results of bone density scans which you should have annually if you’re on ADT . Since I switched to estradiol I’m going to ask if I should stop Xgeva since estradiol is not unfriendly to bones.

[sjc2 in reply to 51na1a]

Yes Xgeva has the same side effect as Prolia (osteonecrosis of the jaw). You are given Prolia if you have osteoporosis from ADT. If you have bone mets, they give you Xgeva... they're the same type of drug and BOTH have that side effect. Our MO said he would get Xgeva every 3 months, when/if needed and he takes Prolia every 6 months. The makers of these drugs have a program that helps pay for some of the costs, but only if you have private insurance, can NOT get the help if you have Medicare.

[Break60]

With such a low Psa why is DEXA necessary? Why not have a bone density scan and if it shows no deterioration, the bone scan wouldn’t be necessary.

Being very conservative my RO gave me prolia when he put me on ADT3 along with IMRT to pelvic lymph nodes . When later I had bcr and a bone met I went on xgeva monthly . I’m been on it quarterly for about a year . Bone density scans have been normal and I do a lot of resistance training to keep bones strong. Recently I stopped Lupron and started estradiol patches since they’re less of a problem for bones.

[sjc2 in reply to Break60]

DEXA is a bone density scan. That's what he had done and he does have osteoporosis in his hip, so we started the Prolia every 6 months.

[Break60 in reply to sjc2]

My bad! I thought it was a bone scan.