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.
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Donni1
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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
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.
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.
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.
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.
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.
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.
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 .
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.
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.
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.
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.
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.
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.
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.
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.
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
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.
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.
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.
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Bone mets and no Recommendes treatment 
Questions
2 years into Stage 4 Treatment 
Wait time for radiation is 6-8 weeks in BC Canada; will this cause an issue with triplet approach?
Gleason 7, diagnosed last november
