Extensive Bone Mets Stage 4 Treatment Plan - Advice

[Donni1]

Hi there,

I want to begin by thanking you all for the information you provide and the responses you give. This page has been an incredible solace at a painful juncture in our lives.

My father was diagnosed with stage 4 prostate cancer, presenting with a PSA of 937 and extensive bone mets to spine, ribs, hips, but no lymph node/ or visceral disease in Nov/Dec 2024. He was put on monthly Degarelix shots from Dec/Jan/Feb and will now transition to three monthly Decapeptyl. PSA went from 937, to 79 (Jan), to 20 (Feb), 11.9 (Early March) on Degarelix alone.

We are based in the UK and utilizing the wonderful care at Clatterbridge. When we met with his oncologist, he gave two options, one of triplet therapy, and the other (which he preferred) Erleada (Apalutamide) + Decapeptyl + Zoledronic Acid. I am aware of the trials underlining the effectiveness of triplet therapy and also outlined this in the meeting. My father is old fashioned, and believes in his doctor. The oncologist explained that when taking into account my father's lack of visceral disease, response to hormone therapy, his healthy lifestyle and ability to exercise, he would opt for Doublet (Erleada + Decapeptyl + Zoledronic). He explained that we could use Taxotere at a later date when his symptoms demanded it. My understanding is that in his case, chemo works best when administered early.

My father is doing well, his considerable pain is much improved, his sleep is still not great, but his water works have also improved. He takes his grandson out daily, eats well and for the most part is in good spirits.

I understand that the overwhelming response might be that we should have opted for triplet, and this scares me. He has begun taking Erleada today and I am praying his PSA will continue to plummet and he will go on to enjoy his life. I am reaching out for guidance and hope. Are there others that have had success with a similar treatment plan, is there anything you may suggest in the meantime.

If you are reading this, I want to thank you in advance and wish you nothing but the best in your own situation and journey. Thank you.

[Tall_Allen]

Whhy the zoledronic acid - did he have a Dexa scan?

[Donnni1 in reply to Tall_Allen]

They recommended it as a bone strengthening agent alongside the hormone therapy and its long term use. He has not had a dexa scan, he has had

Prostate Biopsy: Gleason 9/10

CT Scan (Thorax, Abdomen, Pelvis): No visceral metastases; extensive bone lesions.

Bone Scan: Widespread bone metastases; sclerotic changes.

MRI (Pelvis): Bone lesions in femurs and pelvis; no fractures.

X-ray (Right Hip): No immediate fracture risk; metastatic bone lesions present

[Tall_Allen in reply to Donnni1]

The serious side effects of Zometa and Xgeva increase with time spent on it. Insist on a Dexa scan first.

[Donni1 in reply to Tall_Allen]

I will definitely ask about this, thank you! I had thought it was protocol to administer the bone strengthening agent alongside the second gen hormone therapy

[Tall_Allen in reply to Donni1]

No, it isn't.

[Jeremiad53 in reply to Tall_Allen]

Does using Zometa while on Abiraterone also carry higher risks?

[Tall_Allen in reply to Jeremiad53]

The side effects of Zometa may occur regardless of hormone therapy.

[vintage42 in reply to Donni1]

Donni1 said " I had thought it was protocol to administer the bone strengthening agent alongside the second gen hormone therapy".

My Uro thought the same when he started me on doublet ADT therapy, but I declined his Prolia (desunomab). My bones were normal on the initial DEXA scan, so I planned on exercising and a supplement to maintain my bones, and get another scan in a year.

So after a year, I had a sore sacrum which an MRI showed to be an insufficiency fracture. I had a DEXA scan which showed bones were lower in the normal range except one hip had marginal osteopenia. And I changed to a MO who again said I should be taking Prolia with ADT therapy. So I have started Prolia.

[Oldie68 in reply to vintage42]

How are you tolerating Prolia? Any side effects?

[Jewelrylady in reply to Oldie68]

My husband, and 2 friends (female) are on prolia and have had no side effects. When you read about the side effects it sounded awful! But everyone responds differently.

[vintage42 in reply to Oldie68]

I had the first shot 7 weeks ago and no effects so far.

[Tall_Allen in reply to vintage42]

An "insufficiency fracture" means your bones lacked mineral density, either due to osteopenia, osteoporosis, arthritis, long-term corticosteroids (beyond replacement for abiraterone), mechanical injury, or other disease (liver, renal, thyroid, rickets, etc.).

[vintage42 in reply to Tall_Allen]

Thanks, that's what I gathered. The fracture was in the left sacral wing. The scan said the lowest T-score was at the total right hip measuring -1.1, with.osteopenia being -1.0 to -2.5. It did not even mention the sacrum being low.

I got off easy substituting daily exercises and supplement for Prolia, but did not entirely escape a touch of osteopenia.

[Professorgary in reply to Donni1]

Dexa scan or not, his dentist should clear him first.

[Donnni1]

additional info, he is 69, generally healthy Mediterranean diet without the red wine. He goes on walks every day, is still pretty mobile. Does not drink, but does smoke. Bloods generally unremarkable in terms of negative outliers but his ALP levels are elevated at around 280 at present.

[LuvLapsang]

Hello, I had a very similar start to my care as your dad, and I share my prayers for him and your family. I’m 55, was diagnosed two weeks short of my 52nd birthday with a PSA over 2,000, and a combo of Lupron + Erleada kept my PSA suppressed below 1 for around 2 1/2 years. I also use Xgeva as a bone strengthener and have thus far avoided any fractures. So for what that’s worth, your dad seems to be off to a good start. Once Erleada lost its effectiveness, I did Docetaxel. If I had it to do all over again, I wouldn’t change anything about my care. The fact he’s exercising and that he has the loving support of his family is also a big positive for his journey.

[Donni1 in reply to LuvLapsang]

Thank you very much for taking the time to respond.

Was there much discussion between Xgeva or Zoledronic acid, and was Xgeva administered alongside the Erleada immediately. It sounds like your response was great, and I hope you respond just as well on upcoming treatment. How did you manage once moving onto the Docetaxel?

Thank you again for the response and I wish you the very best.

[LuvLapsang in reply to Donni1]

I appreciate your concern and support. Xgeva was the only option my MO discussed, and since I had just received the diagnosis, I wasn’t thoroughly aware of all of my options. I started Erleada and Xgeva at the same time. As it stands, I’d say I’m satisfied with Xgeva, as I’ve had a root canal and a tooth extraction, with no adverse effects to my jaw (and no skeletal fractures). I was receiving monthly Xgeva until I started Docetaxel, at which time we moved to injections every 90 days.

Docetaxel for me started with almost no indication I had received the treatment. No nausea or gastrointestinal issues. No loss of appetite. After the second dose, I noticed my hair was loose enough I could pull it out in clumps without feeling any resistance, but oddly enough, I never found hair on my pillow, etc. I had my (stylist) buzz my head, and after my treatments ended, my hair has grown back. It wasn’t until roughly the fifth dose that I started experiencing heightened, then extreme, fatigue. After dose #7, I tapped out. I could barely stay awake during the day. After about six weeks of recovery, the worst of the fatigue subsided. I feel like I’m entering the treatment room for Jevtana in a couple weeks ready to go again. I’ll stick with it as long as I have tolerance and efficacy. Once the treatment starts, I plan to start a tread and chronicle my experience.

Take care!

[GP24]

I agree with your MO. The doublet therapy will work most probably as well as the triple therapy and provide a better QoL. Better start with Zometa in a couple of years after seeing a dentist familiar with ostenecrosis of the yaw .

[Donni1 in reply to GP24]

Thanks for the reply! I also read your post referencing the PEACE-1 trial, thank you for sharing!

Would you suggest delaying the Zometa in the meantime?

[CAMPSOUPS in reply to Donni1]

The use of Zometa in my case and others was that at diagnosis I had wide spread bone mets. (nothing to do with a bone density scan or because going to be on adt for a long time).

With my very compromised skeleton concern about fractures and the need to introduce stabilization to the bones was the impetus for Zometa.

For some Zometa can introduce serious jaw infection/necrosis and a dental appointment before first Zometa infusion can sometimes indicate a need to take care of dental issues prior to Zometa that may lessen the chance for later necrosis under Zometa. Or even cancel the ability to have Zometa (rarely).

As a side note and purely anecdotal after 4 years on Zometa I came off it about a year ago. I've had in depth dental appointments since and thankfully no infection/necrosis. A lot of other stuff though because I came into this mess of cancer in late 2019 With to say the least not good dental condition to begin with lol.

[Kaliber in reply to CAMPSOUPS]

My experience pretty much parallels camps’ experience, when DXed I had so many and such a widespread met load that my oncologist ( him and two succeeding ones ) gave me a total of 60 zometa infusions over 4-5 years or more. I’m off zometa now, but several successive oncologist thought giving me the zometa was the right call. I’ve never had a bone density scan that I know of, and …..so far…. No detrimental effects as well.

Wishing you the best moving forward.

❤️❤️❤️

[CAMPSOUPS in reply to Kaliber]

Yaaahoo maybe. Your off Zometa too?

Thankfully never had your SE's but are you getting any reprieve ha ? Hard to tell with everything else we deal with. At least no crashing "flu" for ya every 3 months.

❤️❤️❤️

[Kaliber in reply to CAMPSOUPS]

Rotflol ….. yea I’ve been off a year or two, I don’t remember. Something happened and suddenly people were “ horrified “ at how much zometa they gave me… lol. I attributed it to changing treatment perspectives / treatment evolution…taking place over some years. I don’t want to go into my experiences on zometa …. Which you are well aware of ….. I’m a super responder and the experience of most will be different from mine. I don’t want to freak out the new zometa warriors coming along Rotflol. Encourage rather than discourage. it’s been a wonderful relief.

Love ya buddy

❤️❤️❤️

[CAMPSOUPS in reply to Kaliber]

I'm with ya on all that. We walk a fine line sometimes. Need to put some conscious thought in before replying sometimes here. I've found times I'm struggling in a reply--don't want to give false hope but want to make sure I convey that which hope can be hung on. That kind of thing. This posts subject is similar to others where the potential to spiral out of control is as possible as you think it is lol.

Love ya too brother, you and the hammer keep sloggin thru, know you will.

❤️❤️❤️

[Kaliber in reply to CAMPSOUPS]

Thank you buddy, hammer says hi . You are right and we are all different too….

Been recouping / sleeping today , nice day but still recovering. Svengoolie tonight and DoorDash QOL fun hopefully…. Might try to do some outdoor stuff tomorrow , or better during the week.

Later alligator

❤️❤️❤️

[CAMPSOUPS in reply to Kaliber]

Love to hear that.

My best to the hammer. I'm feelin special to have the connection.

Svengoolie! I previewed tonight's. Oh yea. I'm in lol.

Man I know I can always round up the movies on internet tv, etc. but I missed a good one awhile back. Oliver Reed, Hammer studios, werewolf. His demeaner, his eyes which I bet was his natural self always lent an extra creepy edge to the movies he was in.

I evolved into a good day by about 3 or so this afternoon. One of those days when I thought I'd be below par all day. To top it off I accidently took a dose of narco way soon after an earlier dose a couple hours ago. Doin very good lol.

Love yuz two,

❤️❤️❤️

[Kaliber in reply to CAMPSOUPS]

I was “ out “ when I answered this first time.

Roger on Oliver reed, I think Jack Palance is in that same boat too. He had some mean / mean looking western roles …I think that carried over to his Dracula role too.

Ima glad you are having a “ better “ day buddy. They seem hard to come by lately. Roger on the narco , lol ….more is always better . Just kidding of course ( not ) Rotflol.

I usually end up sleeping through half of Svengoolie but I think I saw more of it last night lol.

Improving here too …. Gonna be mid 70s here today, I’m in the jacuzzi this morning soaking those discomforts away. Might even try a etrike ride this afternoon if my energy holds. The hammer thought that was funny. Whatever ….lol.

🌺✌️🌹🌼❤️❤️

[CAMPSOUPS in reply to Kaliber]

The hammer thought that was funny. rotflol.

I kinda lost my train of thought. I had replied about a paragraphs worth and shut down about 8 or 10 tabs including this one accidently lol. Thru me thru a loop rotflol. My brains not equipped for that lol. Reminds me of yesterday I made a point when I saw one of my neighbors to walk over and chat. He said he's a math teacher. With a sober, deadpan face I said "that side of my brain doesn't work". Lol.

I'm glad you can get some QOL out of those little things like the Jacuzzi on a nice day. I read the other day you've got some bird friends there too. Nice, I feel like I'm hanging out with yuz two the way you describe it and the little "hammer thought that was funny" comment. Good stuff.

Here we go again. What's up with us or maybe there isn't a slice of life you haven't experienced lol. Similarities lol. Jack Palance is way up there on my "list". I know the Western you speak of trekking across the foothills maybe some spirit thing going on, my memory is vague I'll have to look up the movie. He was a really good Jekyll and Hyde too. I think it was one of those CBS Playhouse Movies from way back in the day he played the part.

❤️❤️😍

hangin out

[Giuliamen]

hi! I just posted about my dad who’s on a very similar journey. Diagnosed at the same time as your dad, with similar PSA/metastases (most bones, plus bladder and mesorectal fascia involvement - not sure if these are considered visceral). he’s one year younger than your dad and exercises rarely.

He was put on triplet therapy and he’s handling it well so far. The doctor also gave us the doublet therapy option. When we decided to go for the triplet, she mentioned that QoL might be affected, yes, but did also say that triplet therapy would add a number of years and it’s generally well tolerated.

However, it seems that further down the line, chemo will be ruled out as an option, which wasn’t great to hear. I think all in all, you all made a good choice. I’m glad that the hormone therapy alone is so effective for your dad.

[Donni1 in reply to Giuliamen]

Hi there, I can imagine its a really difficult period on your end too, I really wish you and your family the very best.

While Chemo may be ruled out later down the line, my understanding is that using it earlier may mean that 'down the line' is a very long time away! I hope your father continues responding to the triplet and has a long time to enjoy his life yet. My understanding is that visceral means vital organs like liver or lungs, so I would say its definitely encouraging for your father too that he was clear there

[speranza10 in reply to Giuliamen]

What do you mean chemo will be ruled out later?

[Professorgary in reply to speranza10]

That is what my oncologist told me also. I think it can be a great pressure tactic for some. He asked me at what psa I would agree to chemo and I asked him what psa he would recommend it. He had no answer because there is no specific answer. Some guys die with psa in the single digits and some guys are alive with psa in the thousands. I told him I hunt, fish and work around the house and I will not risk that for a chance of chemo caused neuropathy. I told him pain is a great motivator and if the pain gets bad and I think the reward is worth the risk I’ll consider it.

[Giuliamen in reply to speranza10]

I’m not sure why she’d say that, but his MO specifically mentioned that if we do chemo now, it won’t be an option later on - specifying that there will be different drugs that can be used instead of chemo (I guess she meant in case it becomes castration-resistant).

[speranza10 in reply to Giuliamen]

If your father is ever short of options, it might be useful to rechallenge with docetaxel, or another type of chemo, cabazitaxel, the latter is still part of the taxanes and for some people it works even better and is better tolerated than docetaxel. However, don't think about this now, think about being well with your father, darolutamide could last for a long time and what's more it is a drug with very few side effects, so now is the time to be worry-free. Good luck, I wish you the best.

[Giuliamen in reply to speranza10]

Thank you so much! Really appreciate to know that there are still options, including chemo, later down the line (and in Italy)!

[speranza10 in reply to Giuliamen]

Yes you said it right, many options. Repeating docetaxel or doing cabazitaxel for the first time might even make zytiga xtandi or erleada work for a decent amount of time even if darolutamide fails.

[Sailing-Todd]

My husband was diagnosed (delayed following a broken hip) in March 2022.

He was 62, Gleason 10, PSA 1120, extensive bone metastases with pelvic and mesenteric lymph node mets also.

His oncologist (not the one that missed his disease) said his bloods at diagnosis meant he was too poorly for chemo.

He has been on Lupron (now decapeptyl) and Apalutamide since, and for the last 18 months has been >0.1. His oncologist also reassured us that Apalutamide has been found roughly equivalent to chemo in the overall treatment plan. He had radiation to his hip and prostate (to debulk) at around three and six months respectively.

After a year he was also put on Zolendronic acid, which he was fine for around eighteen months but then started to cause him pain, so the oncologist said he’s probably had most of the benefit from it and withdrew it, (also no DEXA scan).

He is absolutely making the most of his life, out most days with activities and interests that keep him really busy and his mind occupied. I wish you every success with your father’s treatment.

[petrig]

I have widely spread bone mets.I had triplet therapy (adt+6x docetaxel+Nubeqa(started after 3th doce).Here are,some of the results for me:

.."A response to treatment is also noted in the skeleton. The sclerotic bone has become more sclerosed throughout and the sclerosis has thickened, but in agreement with the treatment response, the soft tissue mass associated with bone metastasis, which was most recently bone-destroying, has disappeared. This soft tissue mass is visible in the last imaging in the left wing of the sacrum and also at the SI joint level in the posterior cortex of the left iliac bone where the tumor mass is destroying the cortex. The cortex is now intact in the subjects and the soft tissue mass seen in the bone has been repaired by sclerosis.".

They suggested to put me on monthly Xgeva but I said I dont want to start Xgeva yet because serious possible side effects.I would start Xgeva when I am in castration resistant stage. I started daily D + calc.

Now I am on daily Nubeqa,Orgovyx +Tamsact.

[Professorgary in reply to petrig]

Magnesium is needed for the body to utilize both calcium and vitamin d. Too much calcium with not enough magnesium and you risk kidney stones and heart problems.

[petrig in reply to Professorgary]

Yes .I take magnesium.

[SsgCulldelight]

Hey D, good that your dad is responding to treatment and his psa is low, I think watch and wait at this stage especially if dad is up in age and has the awesome ability to be highly active, that's part of why he's doing well you know. A body at rest well I think u know the rest of that. As men we are fortunate to have a bio chemistry and metabolism that defeats mutated cells like this faster which aids speeds production of new healthy cells, radiation and cancer chemo chemicals are very harsh on the system and truly depend on your system producing good cells faster than the mutated cells can destroy them. Doctors are great so is common sense do your research on all and put diet and exercise First, cancel ALL PROCESSED SUGAR. keep on doin Pops, love n light.

[yardsailor]

Donni I like your father also presented at DX with a high PSA over 1000 and a increasing alkaline phosphatase number I was given a bone scan that suggested a supper scan ,any way extensive bone mets in my spine ribs and hips. A CT scan showing no lymph node or visceral disease I also had a dexa scan for a base line.like your father I was given degarelex for two years and, then shifted over to eligaurd every 3 months along with Abiraterone daily.then after a thorough dental exam I was given Priola n three times a year .This all started a little over three years ago my PSA went down quickly and has been at .014 for two years .I had a bone scan last week and the radiologist assistant offered to go over my scans and i mentioned that i was thinking of going skiing she pulled up my first scan from three years ago and said this guy i woudn't want see on a ladder,then moving to my most recent scan she said this guy could go skiing if he wanted too so i did. all the best to your dad

[Orange95 in reply to yardsailor]

Amazing, great for you. Thank you for sharing.

[Eye2eye in reply to yardsailor]

Hello! Thank you for sharing your expetienes of this disease. My 78yrs old fit &otherwise healthy husband was diagnosed...T4 N0 M1 Gleason 10 in October24. His psa was over 4000. He has had Degarelix since & psa 7 in feb. We were not sent to oncol until March4th so told cant have Apalutamide . Oncolgist suggests having 6 x Docetaxyl now. We are trying to decide as his qol is so good other than self catheterisation x2 daily to keep down residual,he can void well with Tamsulson.

I know nobody can say but we are going atound in circles. Would it harm to wait another 3 months to see if psa hoes lower.

Thank you for reading this we welcome any comments at all. Thar agony of deciding is dreadful as so many on here will know.

Sue

[yardsailor in reply to Eye2eye]

his PSA has come down alot with degarelix mybe Apalutamide or abiraterone would help I have no experiance with Docetaxyl but it would be good to hit this cancer something other than just Degarelix his PSA will come down

[Eye2eye in reply to yardsailor]

Thank you yardsailor for your answer. We've been told he cant start Aplutamide as there was a delay in our us receiving our first oncolgy appt we missed the 12wk window by 8wks. Oncologist said given the gleason 10 he would probably be having the chemo conversation anyway. I wonder if it would be worth waiting for another psa as he has only had one since starting Degarelix.Any thoughts are so welcome,we send you lots of warm wishes.

Thank you

Sue

[yardsailor in reply to Eye2eye]

I get a PSA blood test every month it helps my peace of mind it's not a expensive test I would insist on this for your peace of mind

[NanoMRI in reply to yardsailor]

wow, a fellow PSA 'wonk'/'nerd' maybe sailor? My costs for my self-directed uPSA testing over the past nine years totals into thousands. IMO some of the best monies I spend.

[yardsailor in reply to NanoMRI]

Arrrr!PSA. sets our course and warns of a coming storm shipmate

[NanoMRI in reply to yardsailor]

well stated - I think I will pirate this.

[j-o-h-n]

Greetings Donni1,

Would you do Yourself, your Dad and us Members a favor and add Pca info to his/your bio. All info is voluntary. Thank you and you must insist that "YOUR DAD STOPS SMOKING RIGHT NOW (NOT LATER)".

Good Luck, Good Health and Good Humor.

j-o-h-n

[Professorgary]

Sorry to hear about your fathers diagnosis but very glad he has someone like you by his side. I started Lupron after Casodex in May 2022 with a psa of 5664 and mets to both lungs, nodes, spine, ribs, left femur and pelvis. Psa came down to 278 in about 3 weeks and bottomed out at 6 after 10 months. Started Abi and prednisone Sept 23 when psa was 20. Over a period of 6 months psa dropped to 1 and started climbing. It’s 9.8 at present and local oncoligist is pushing chemo. I got a second opinion from an oncologist that only treats prostate cancer at JHUH. He said to switch from prednisone to dexamethasone which is what I just did yesterday. I am not curable so I don’t rush for another treatment as soon as psa rises. I read of guys here using crutches and walkers, often times caused by the treatment. Please understand, I am now living a great and active life because of the drugs I am taking but I make sure I research the side effects of the meds I am taking and use suplements to mitigate and I always choose qol over treamtments that may give me 4 or 6 extra months but have a good chance of reducing my qol. If you research docetaxel treatment for prostate cancer you will find triplet therapy works best before extensive mets. After it gets to a point like I am it is more effect on larger tumors.Adt causes heart issues, high bp, brain fog, high blood sugar, fatigue and a few other issues. Please research magnesium, berberine and curcumin for each of the side effects caused by adt. And pray alot. Best wishes and God bless, Gary.

[Professorgary]

As TA said, no xgeva before dexa scan. Most folks do ok on it and some have horror stories. I stopped because it caused shortness of breath, body sores, upper respiratory tract issues and seven cavities after I was on it for a year.

[gbasso1]

I hope and pray for the best for your father and you as you minister to him.