What do most recommend for bone Mets ... - Advanced Prostate...

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What do most recommend for bone Mets treatment

Olivia007 profile image
55 Replies

Hello my dad has been doing as well as one can with prostate he was diagnosed in Dec 2014. It was only to his femur and humerus bone. Fast forward March 2020 he had a pet scan done yesterday and it looks like he has multiple multiple areas of bone Mets it’s not just his humerus and not his femur anymore it’s to his spine, rib, sacrum, iliac crest, pretty much everywhere where there is bone so my question is what treatment at 82 years old would all of you recommend? I understand at the end it is his choice but I’m just trying to get recommendations

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Olivia007
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RyderLake2 profile image
RyderLake2

Hello Olivia,

I too have extensive bone mets. Right from the get go (2013) my oncologist recommended Vitamin D, Calcium, and Prolia (denosumab). The latter, in higher doses, is known as Xgeva. It is a Rank-L inhibitor. If you remember your high school biology bones are continually regenerating themselves. Two factors are at work osteoblasts which build new bone and osteoclasts which tear down old bone. Prolia encourages osteoblasts and discourages osteoclasts which makes your bones thicker and therefore stronger. It doesn’t get rid of the cancer but it may prevent a skeletal related event (SRE). Hope that helps!

Olivia007 profile image
Olivia007 in reply toRyderLake2

Doctor suggests urologist xofigo other doctor suggests radiation? No one suggested what u said. My dad has been on zytiga for 2 years but number started to rise so we had pet scan done. So I don’t know just looking at what others did or r doing thank u

RyderLake2 profile image
RyderLake2 in reply toOlivia007

Hello Olivia,

I was just talking about bone health. If you are talking cancer then all the things you mention are options. If Zytiga failing you might want to try Xtandi (enzalutamide) or clinical trial for Lutetium 177 (Vision trial). Mainstream in Germany, Australia, and elsewhere if your Dad is able to travel. Hope that helps!

Cynthgob profile image
Cynthgob in reply toOlivia007

How high did psa rise?

Olivia007 profile image
Olivia007 in reply toRyderLake2

He is on xgeva as well since 2015

in reply toOlivia007

Wow

Danielgreer profile image
Danielgreer in reply toRyderLake2

Hi Ryder, how often do you get your Prolia shot? Is there only one dosage for Prolia? Thanks

RyderLake2 profile image
RyderLake2 in reply toDanielgreer

Hello,

I just receive a maintenance shot once every six months. Prolia aka Xgeva (denosumab) available in several different dosages dependent on severity of cancer and bone mets. Hope that helps.

Danielgreer profile image
Danielgreer in reply toRyderLake2

My insurance company won’t pay for XGEVA until my PC becomes resistant to the drugs. I’m currently hormone sensitive with widespread bone mets. My insurance will pay for one shot of Prolia and I was thinking about paying for additional shots out of pocket. What dosage do you take of Prolia?

Olivia007 profile image
Olivia007 in reply toDanielgreer

I’m sorry to hear that luckily my dad has been on XGEVA since he got diagnosed but now has many more bone mets

MMK-XFuture profile image
MMK-XFuture in reply toOlivia007

I have metastatic bone cancer from prostate. Cancer went to my entire spine, gamma CT scan lit up like my xmas tree. Had 10 days radiation, pain went away. Taking Xgeva shot monthly and Zytiga plus prednisone daily. Also taking Caltrate. Seem to be working for me, starting to gain weight, strength getting back.

Hang in there. Your Dad is lucky to have you.

Olivia007 profile image
Olivia007 in reply toMMK-XFuture

That’s great news I’m waiting to hear back from oncologist to see radiation or xofigo urologist says xofigo oncologist hasn’t returned call maybe cause it’s the weekend?

So ur pain is less?

MMK-XFuture profile image
MMK-XFuture in reply toOlivia007

Yes. Used to crawl out of bed just to go to the bathroom. Had to take oxycodone or oxycontine depending on extent of pain. Wished I would just not wake up in the morning. After about the 7th radiation session, pain started going away. So glad God knew not to listen to my prayers and my Onco knew what she was doing.

Downside, maintenance cost is really high with no insurance.

Olivia007 profile image
Olivia007 in reply toMMK-XFuture

I’m glad it worked for u this is the light radiation?

MMK-XFuture profile image
MMK-XFuture in reply toOlivia007

Its 3D conformal RT, similar to IMRT. They used 300 cGY or total of 3000 for the 10 sessions.

Break60 profile image
Break60 in reply toDanielgreer

Medicare pays for xgeva and I am not hormone resistant. I had radiation -SBRT- to three bone mets and use estradiol patches in lieu of Lupron and it’s ilk for systematic treatment. Estradiol is much easier on bones than Lupron. I get annual bone density scans and they’ve always been normal so I’m not losing bone density. I’ve reduced xgeva to quarterly shots. My PSA has been undetectable for the last seven months .

Danielgreer profile image
Danielgreer in reply toBreak60

Hi Break, thanks for the response. Strange that Medicare pays for XGEVA while hormone sensitive but my insurer won’t pay. I’m 59 so not eligible for Medicare yet. I’m not too worried though since my bone density is normal and I’ll probably need to pay for 3 or 4 Prolia shots before the cancer becomes resistant and my insurer will then pay for XGEVA. Unless somebody feels strongly I should pay for the XGEVA? Very expensive though ! I see my MO in a couple of months and plan to ask her what to do.

Break60 profile image
Break60 in reply toDanielgreer

That sucks. Ask about estradiol patches. They are much easier on your bones and everything else plus much cheaper. The only SE I had was gynecomastia but it’s gotten better ie my tits are getting smaller lol!

paige20180 profile image
paige20180 in reply toDanielgreer

Hi. Has your doctor or will your doctor tell your insurance it’s medically necessary and explain it’s covered by Medicare? It’s exhausting doing appeals but I do not let Blue Cross get away with anything. I do appeal after appeal. If my doctor had done a peer to peer, I think his last PET would not have been turned down. I just think we should not give up if and argue medical necessity. Insurance hopes you won’t question.

Danielgreer profile image
Danielgreer in reply topaige20180

Hi Paige, thanks for the perspective. My MO did a peer to peer but Anthem has not relented. My last appeal can be done through my plan administrator which I was not planning to do but I think you’re right about not giving up so I will pursue that.

paige20180 profile image
paige20180 in reply toDanielgreer

I’m doing the same plus union attorneys. I sure hope you Prevail.

LearnAll profile image
LearnAll

Any thing which lowers his total testosterone to very low (less than 20)...such as Lupron ,Eligard etc can kill the prostate cells and remember, the bone mets are nothing but a bunch of prostate cancer cells. Also, any effective Anti Androgen such as Bicalutamide, Abiraterone, Enzalutamide, Apa lutamide etc will also do the same thing...meaning they will block androgen receptor so the cancer cells are deprived of testosterone and as a result cancer cells can not survive.

If there iare not many cancer cells left ...there are not going to be bone mets left. His PSA level will tell the story of how much cancer cells are still alive.

NO CANCER CELLS..NO BONE METS.

Choose carefully based on his age. ...Enzalutamide increases seizure risk, Abiraterone increases high BP and heart failure risk. So discuss with doctor each med in his context.

Olivia007 profile image
Olivia007 in reply toLearnAll

He’s currently on zytiga xgeva and lupron I don’t know if or what will they suggest I know my dad as of late has been complaining of pain more so then he has since being diagnosed

depotdoug profile image
depotdoug in reply toLearnAll

I did not realise or really expect my Abiraterone meds to increase my BP,

Why didn’t my Cardiologist or EP or PCP doctors know this? I just spent February 12-14 in cardiac telemetry floor room in AFIB. Not a one Cardio doctor correlated Zytiga with my high BP. Any suggestions where to look for proof?

LearnAll profile image
LearnAll in reply todepotdoug

You can look the package insert of zytiga or any reputed pharmacology book or physicians desk reference.

LearnAll profile image
LearnAll

Ask your doctor about radium treatment for bone mets.

Olivia007 profile image
Olivia007 in reply toLearnAll

That Xofigo?

LearnAll profile image
LearnAll

yes. Xofigo is also called Radium223. May Work good for bone mets.

Olivia007 profile image
Olivia007 in reply toLearnAll

Thank u

Tall_Allen profile image
Tall_Allen

Xofigo is certainly his best choice for bone metastases. He can't combine it with Zytiga, but he can combine it with Provenge. He should be taking a bone-preserving agent with it.

Olivia007 profile image
Olivia007 in reply toTall_Allen

Thank u I will ask the doctor I was reading about it too. His urologist a while suggested it but the oncologist didn’t so we will see I called both doctor’s today to speed up the appointment and get the ball rolling.

Olivia007 profile image
Olivia007 in reply toTall_Allen

Hello Tall_Allen, I have been in here for a few years and u have been very helpful and knowledgeable I have a question we won’t see the oncologist till April 1 so I’m trying to do as much research as I can?

My dad has had prostrate cancer diagnosed in December 2014 Gleason score of eight he has been on Lupron and xgeva since then till present day he also had Provange in 2016 and now for about two years he’s been on Zytiga and prednisone his PSA levels were rising I could see that my dad was a little more stiffer when he walks and he couldn’t get out of out of his chair as easily and kept complaining he was in some kind of pain in the back but we didn’t know what because two years ago he did have a sciatica issue that that cleared up with an epidural so I assumed it was the same thing I noticed he was taking a lot of more Advil but my dad kept saying oh I’m fine I’m fine I think he’s scared as anyone is that he knew the cancer could be getting worse or traveling to other places and so anyways with the PSA level rising the oncologist decided to do a pet scan so that was done March 4 and it came back with most more bone Mets initially in 2014 he only had bone Mets to the femur and to the humorous and he really didn’t complain of any pain but now the bone Mets are all in his sacrum his arm spine so he’s in a lot more pain I could see that and the images don’t lie my question to you as I know there’s lotta choices out there still thank God but there is Xofigo and there is other stronger chemo therapy i’m worried because yes my dad is 82 years old he’s a widower he lives alone in a two-story home I do visit him as much and as often as I can but I have two kids and a husband of my own to take care of as well but I’m trying to see which one is better to help his pain obviously I don’t know will chemo kill the bone mats is there anything out there that will cure the bone Mets imy question to you so if nothing will cure what’s the next best thing that will at least help him with his pain and for it not to get worse I guess or that’s not possible please if you can educate me regarding the differences of him going on Xofigo or him doing the basic chemo drip therapy

Tall_Allen profile image
Tall_Allen in reply toOlivia007

Xofigo was specifically designed to help with pain from bone metastases . And cabazitaxel also does wonders for pain. As to which to do first... I think that's just judgment - see what his oncologist says.

Olivia007 profile image
Olivia007 in reply toTall_Allen

Thank u I’m wondering what about radiation?

Tall_Allen profile image
Tall_Allen in reply toOlivia007

Xofigo is radiation.

Olivia007 profile image
Olivia007 in reply toTall_Allen

Who I thought about the light beam radiation

Tall_Allen profile image
Tall_Allen in reply toOlivia007

Xofigo is better when there are multiple metastases. You can't spot treat that many.

Olivia007 profile image
Olivia007 in reply toTall_Allen

Thank u for educating me

Mn84 profile image
Mn84 in reply toOlivia007

My husband is similar to your dad. In age & treatment & health He’s had apc since since 2013 starting with casodex. It stopped working after 6 years. Now the Abeing on zytiga Pres & xgeva 3 years it stopped working & his Mets are getting worse & PSA is rising fast. oncologist said he has to start chemo drip ASAP We are scared.

Olivia007 profile image
Olivia007 in reply toMn84

Has he tried Xtandi?

larry_dammit profile image
larry_dammit

😢. My dad is 88 and has been classed stage 4 with Mets in his hips and surrounding areas. His last oncologist had him on zxitiga for a year but the side effects were awful. We decided quality of life was more important so dropped hi med. meeting another oncologist soon ( my doctor ) to see if there is anything we can do for him. Last oncologist gave up on him . Guess it’s a quality of life decision,like y doctor as he said from the first that there was no reason to be in pain. Hard decision ahead for all. 🙏🙏🙏🙏

Olivia007 profile image
Olivia007 in reply tolarry_dammit

What will you all choose to do? Will he stop all meds or will you try something new?

larry_dammit profile image
larry_dammit in reply toOlivia007

Will all depend on what my doctor says. He’s very frank and realistic, been trusting him with my life since August of 2016. Just want what’s best for dad🙏🙏

EdBar profile image
EdBar

Perhaps try switching from Zytiga from Xtandi and see if you get some mileage out of it. Xofigo is a good choice for bone mets. All have SE’s so be aware of them. Be cautious with supplements many can have negative effects especially at his age. Ultimately it’s a quality of life decision that your dad will have to make.

Ed

Olivia007 profile image
Olivia007 in reply toEdBar

Urologist and oncologist said it wouldn’t make a difference

Olivia007 profile image
Olivia007 in reply toOlivia007

Regarding the zytiga or xtandi they said since zytiga stopped working xtandi wouldn’t do anything for him either?

EdBar profile image
EdBar in reply toOlivia007

Not necessarily, they work differently, might be worth a try but of course ask your oncologist.

Olivia007 profile image
Olivia007 in reply toEdBar

What are SE”s?

EdBar profile image
EdBar in reply toOlivia007

Side Effects

Baddawg profile image
Baddawg in reply toOlivia007

Side effects

Shepard profile image
Shepard

I was referred for XOFIGO, but it was found that the rib bone mets were larger than 5 cm so was switched from Bicalutramide to XTANDI. Mets shrunk to 3 cm and proceeded with XOFIGO, also /began Xgeva monthly. I now have little pain from rib area, but now have lung mets. Consequently, I began Docetaxel - five infusions to date. PSA has declined 20 %. I am 81 years and I feel like I am tolerating chemo, There were a couple bad weeks and eating requires effort and trial to find foods that I want to eat. There are times when you must force yourself. Exercise helps one feel better, but you must still find new diet pleasures.

Scoofer33 profile image
Scoofer33

I'm fairly certain most of you received a warning from your MO about the slight possibility (1.8% chance) that bone strengthening agents could cause a disease called Medicine Related OsteoNecrosis of the Jaw (MRONJ). Diagnosed at 54 years of age in 2015, I was on quarterly injections of Xgeva (Denosumab) for two years before symptoms appeared, and I asked my MO to stop the treatment. Xgeva is the same medicine as Prolia, only it's twice as strong and delivered twice as often, effectively making Xgeva four times stronger than Prolia. It may have worked to strengthen the lesion-challenged bones in my spine, pelvis, ribs, etc. (which were being weakened by the lack of androgen in my system during ADT with Lupron), however, Xgeva went to town on the lingual side of my mandible, which broke, poked through my dissolving gums until my oral surgeon removed a 2" x 3/4" chunk. Since the jaw is now missing and the gums have disappeared, I now have two molars on the bottom left with roots that are dangling in mid-air, the teeth only being held in place by the buccal side of the jaw. I became even more diligent about dental hygiene since I began Xgeva and especially so now that I'm dealing with MRONJ. I think it bears repeating that if you're unfortunate enough to be in the 1.8 %... you have a 100% chance of getting MRONJ!

ctarleton profile image
ctarleton

Anecdotally, I went on the bone agent Zometa (zoledronic acid) when I was diagnosed a little over 6 years ago with Many bone mets and a PSA around 5,000 at age 65. I got the IV Zometa monthly for about 2.5 years, then backed-off to quarterly, and recently stopped it completely, ... figuring that I had enough in my bones to last a life time. Both Zometa and Xgeva (denosumab / prolia) "get the job done", and inhibit excessive bone turnover and loss due to bone mets. The later-developed Xgeva may cost more, but it has the advantage of simpler administration via an injection vs. some routine blood work for a creatinine level check and an IV session for Zometa. Many oncologists tend to use one or the other as their "go to" first preference for cancer patients with bone mets. They will switch from one to the other if anyone has any initial adverse side effects. I also maintained routine dental cleaning and care, and let my dentist know in case I was considering any bone-invasive dental procedure. ONJ is rare, but every little bit of preventative caution helps. I never had a problem with it, myself. Initial Lupron and a bone agent worked very well for me as initial treatments, taking my PSA down to 1.0 and eliminating my back pain near spinal mets. Remember though, that I was in my late 60s when I started those treatments. My decisions might have been different if I were in my late 80s.

Asma1949 profile image
Asma1949

For treatment of bone metastasis My doctor recommended Calcium , Vitamin D & Xgeva Subcutaneous

injection

Olivia007 profile image
Olivia007 in reply toAsma1949

What is he injected u with lupron and xgeva ? My dad has and still continues to get them but the cancer is progressing to more bone sites

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