Stage 4 Prostate Cancer and Hormone Therapy quit working

Posted by cal77 @cal77, Oct 28 12:48pm

My husband is at Stage 4 for one and a half years now...The hormone therapy (Apalutamide and Erleada) seems to have quit working. For the past 8 months, his PSA keeps climbing. It's up to 12 now..
We're scared. Anyone else got to this point? How are you doing when the hormone therapy isn't working anymore.

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I understand you are concerned. Anyone would be. Could you please share what treatments your husband received upon his stage 4 diagnosis? Did he get any radiation? Did he have Chemo? Is he healthy enough for chemo? Typically what the doctors may do is schedule a PMSA Pet scan. It will light up the areas where the cancer is growing. Hopefully, it is confined to one specific area. If it is, they may suggested targeted radiation on the specific area where the cancer is growing. If the PSMA Pet scan shows several spots more spread out, they may suggest a treatment that is considered more Systemic. Those treatments may include chemo such as Docetaxil and or Carboplatin. Or they may suggested Pluvicto and or Radium 223 if the spots are limited to bone. Regardless, you should immediately request genetic and genomic testing. Genomic testing is a blood test that will show if there are any genetic markers such as BRC1, BRC2 that your doctor can act on with treatments. That is important because there are treatments that target those genetic mutations specifically. And yes, if you can, ask your doctor to switch to Nubeqa (Darolutamide). It is a wonder drug for many. Some doctor believe that once Resistance starts switching your ARSI does not work. I am not so sure about that. Xgeva is specifically for bone strength and is used to help prevent the bone loss from being on long term ADT treatment. Praying that you get the best treatment in your situation. Also Praying for you and your husband.

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Ask about Zytega and Darolutamide

I also get XGEVA and Zolodex injection Take 600 MG Calcium and D2 + K3 Costco sale

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@kenporter

Orgovyx in Massachusetts is $2,839.00 for 30 pills. I was told my co pay will be $920.61 per month. Amazing you can get a month supply in Canada for $325. And you didn’t have to pay anything.. you are a very lucky person. Now I’m nervous to find out what my co pay for 44 radiation treatments will be. Get sick in the USA and if your not already in poverty you will be sooner than you think. Wishing you the best of luck. Ken Porter

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I'm so sorry to hear that. It's worth asking around, because some of the people in this forum seem to have insurance that places a cap on their co-pays, so that it stops after (say) a few thousand dollars. I don't know enough about U.S. insurance to offer any concrete information, but fingers crossed that there are options available for you.

I could just afford US 920 (CAD 1,300) / month, but it would put a cramp in my family's standard of living. If I had to add an even bigger co-pay for Erleada, I don't know how we'd manage for long without burning through our retirement savings. I hope you find some better options.

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@northoftheborder

I started on Firmagon (Degarelix) in 2021 because I was in a precarious situation after my PCa spread rapidly to my spine and paralysed me, and we needed to bring my testosterone down as fast as possible with no initial testosterone flare and minimal extra meds (I was already on a witches brew of steroids, blood thinners, insulin, etc trying to bring down the swelling in my spine, control DVT in my legs, and manage the steroid-induced diabetes).

Firmagon+Erleada (Apalutamide) have been working remarkably well to keep my mCSPC in full remission, but the immediate side effects from each monthly Firmagon shot were tough.

Orgovyxv (Relugolix) is a GnRH receptor antagonist just like Firmagon, but in daily pill form, and costs the same (about CA $325/month, though I haven't had to pay), so I wasn't nervous that I was taking a risk by switching.

Orgovyx seems to have become the standard ADT in the U.S. In Canada, it's still very new (Pfizer just got Health Canada approval less than a year ago), but they've priced it the same as Firmagon, and have a patient-access. programme to cover the cost until it gets added to the provincial formularies.

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Orgovyx in Massachusetts is $2,839.00 for 30 pills. I was told my co pay will be $920.61 per month. Amazing you can get a month supply in Canada for $325. And you didn’t have to pay anything.. you are a very lucky person. Now I’m nervous to find out what my co pay for 44 radiation treatments will be. Get sick in the USA and if your not already in poverty you will be sooner than you think. Wishing you the best of luck. Ken Porter

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@freddy9

I am pretty clear about the proctitis being connected to radiation therapy. I felt nauseous the first night following the start of radiation, but that subsided over a couple of days (at the most) or maybe I adapted. Not sure which, except it wasn't an issue for me. There was one other time when I felt nauseous following treatment...the 2nd to last session.
Yesterday ,I noticed the burning sensation, that I felt for the first time 3 says ago, was less. The night before U took a laxative and noticed the stool was softer too. If I could better control it manage my eating behavior, which has gotten worse on Lupron, and get off eating things like bread and pastry ( I don't eat a lot of that, but I can go overboard now and then) and potato chips (not eaten regularly but I overeat when they're around), I should be able to live quite okay with the condition. But, I will try things that sound reasonable when I learn someone who is also a sufferer gets a benefit from taking an action.

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I should have edited this last post before hitting send. Sorry.

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@freddy9

I'm sorry to hear th1at you are having a tough time.
If you look back at the sequel l , nce of receiving the lupron and the radiation, are you able to say which one of these triggered which side effect? I know it's a tall order...just wondering.
Did the side effects come on gradually?
So far, my experience has been:
1. Noticed memory changes and mood shifts shortly after the first injection.
2. Felt nauseous the night after first rad treatment
3. Going into 3rd week of rad and feeling fatigue. Changes in bowels since 1st week of rad.
What do I do?
Walk 25-30 min daily on treadmill
Try to do 10 M of weight lifting every other day.
Eat mostly plant based food with occasional poultry or fish.
I'm no longer experiencing nausea.

2.

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I am pretty clear about the proctitis being connected to radiation therapy. I felt nauseous the first night following the start of radiation, but that subsided over a couple of days (at the most) or maybe I adapted. Not sure which, except it wasn't an issue for me. There was one other time when I felt nauseous following treatment...the 2nd to last session.
Yesterday ,I noticed the burning sensation, that I felt for the first time 3 says ago, was less. The night before U took a laxative and noticed the stool was softer too. If I could better control it manage my eating behavior, which has gotten worse on Lupron, and get off eating things like bread and pastry ( I don't eat a lot of that, but I can go overboard now and then) and potato chips (not eaten regularly but I overeat when they're around), I should be able to live quite okay with the condition. But, I will try things that sound reasonable when I learn someone who is also a sufferer gets a benefit from taking an action.

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@lag

My husband is still with us. His mets have been on his spine and other bony areas. He finished Pluvicto in August, and September scans and labs showed it was only moderately successful; his PSA indicates cancer is still hiding somewhere. He will have a PSMA PET, an abdominal and pelvic MRI, and labs in early January at Mayo Rochester and also meet with Dr. Kwon. Next steps depend on what the January tests reveal.

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Doing all those scans In Dec here at CVH in Mississauga Credit Valley Hospital oncology

3 KM from my home across the stream we live on Luck me NO Praise God

My oncologist Is Dr Charles Lim wow

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@melcanada

Is he still with us and what is he on now?

Was something better than Zytiga if you did it again?

Was C mets only in bones like mine or had it spread outside the bones to where?

I start something in Dec after Chemo gave me fluid on lungs so have to stop it

80 feel great Had prostae radiated out 2017 Then L1 radiated 2020 Then Xtandi, then Radium 223 and 2 chemo's

Must take Xgeva to push 600mg calcium back into bone pot holes caused by killing C with chemo

Chemo also gave me PSA flair from 40 to 7000 google PSA flair 30% get it

Also get Zolodex shots to lower testosterones FYI

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My husband is still with us. His mets have been on his spine and other bony areas. He finished Pluvicto in August, and September scans and labs showed it was only moderately successful; his PSA indicates cancer is still hiding somewhere. He will have a PSMA PET, an abdominal and pelvic MRI, and labs in early January at Mayo Rochester and also meet with Dr. Kwon. Next steps depend on what the January tests reveal.

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@northoftheborder

No, definitely go with what you and your cancer team decide on after careful evaluation. Overall survival alone is a tricky stat, because we all start from different places: is your cancer localised or metastatic? castrate-sensitive or castrate-resistant? oligo or high-load metastatic? bones, lymph nodes, and/or organs? how old are you? how's your heart? how well do you tolerate hormone therapy? how active are you? do you have diabetes or other comorbidities? what have you already tried? etc etc.

If the median OS is slightly higher for one treatment than for another, that doesn't mean that the same will apply to your specific situation.

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Bone only T 5 L2 some L6 near tail Nothing outside bone

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@northoftheborder

I started on Firmagon (Degarelix) in 2021 because I was in a precarious situation after my PCa spread rapidly to my spine and paralysed me, and we needed to bring my testosterone down as fast as possible with no initial testosterone flare and minimal extra meds (I was already on a witches brew of steroids, blood thinners, insulin, etc trying to bring down the swelling in my spine, control DVT in my legs, and manage the steroid-induced diabetes).

Firmagon+Erleada (Apalutamide) have been working remarkably well to keep my mCSPC in full remission, but the immediate side effects from each monthly Firmagon shot were tough.

Orgovyxv (Relugolix) is a GnRH receptor antagonist just like Firmagon, but in daily pill form, and costs the same (about CA $325/month, though I haven't had to pay), so I wasn't nervous that I was taking a risk by switching.

Orgovyx seems to have become the standard ADT in the U.S. In Canada, it's still very new (Pfizer just got Health Canada approval less than a year ago), but they've priced it the same as Firmagon, and have a patient-access. programme to cover the cost until it gets added to the provincial formularies.

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Thanks I get my Zolodex shot 10 AM today in house by Zolodex people I will ask Q

See respologist this afternoon Breathing still tight 80 MG prednisone slowly being reduced
Feel good Lots of scans in December CTPET and bone.
I feel great yet cant walk far as breathing difficult caused by fluid on lung brought on by second chemo No more chemo
Also have now small embolism clot on lower lung

May start Zytiga or apalutimide late December

Keep C controlled in T 5 L2 and L5

Zytiga? Is it best for OS survival versus others? May have asked before NEED best one if doing

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