My husband has stage 4 metastatic prostate cancer

Posted by lynnie4ever @lynnie4ever, Apr 16 10:35pm

My husband was diagnosed 2wks ago with prostate cancer following a biopsy.
He has gone through a petscan and an MRI. Today we met with a radiation oncologist and he according to the results of the scans has metastasized cancer that has gone into lymph nodes on both sides of his pelvis and into his lower abdomen. The radiation oncologist stated that now prostate surgery is off the table and recommend s he go into aggressive radiation and oral medication? Am wondering if surgery first would be the way to go then follow with radiation? Any imput would be greatly appreciated!

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@gently

lynnie4ever, don't say go away, yet. You and your husband will have more decisions to make.
In my opinion, radiation would have been a better choice even it the cancer hadn't escaped. But now you'll make choices about what type of radiation and where to have the radiation. That's is where this site is rich with experience.
If you haven't yet gotten somatic testing of the biopsy samples, you should request this from the doctor's office. It can take serveral weeks and can provide valuable direction. Decipher is one that most people have reported here. https://decipherbio.com/
Then you'll want several opinions from various oncologists. You can send the records yourself which I recommend (for speed) or have your doctor's office refer you.
Consider Proton radiation. The most experienced guy anywhere is Carl Rossi CA Proton https://www.californiaprotons.com/ He is seriously worth talking to because he is calming, deeply knowlegeable and he won't try to get a committment from you. Plus he does zoom appointments.
You're in a kind of miserable space, but your husband will probably be given androgen deprivation therapy which will slow or stop growth and reduce the size of the tumor probably for two month before treatment. The treatments are painless.
The gentlemen on this site are wonderful and will welcome your questions.

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We met with the medical and radiation oncologist yesterday! My husband will get an injection of Lupron next week and will start xtandi orally daily! Radiation will probably not start until Aug. as the field is to broad right now! He has to start somewhere and we feel this is a good start! I am so grateful for everyone on this site as you all are not only full of knowledge..you also give Hope! Bless you all!

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Best of luck to both of you, and remember that you're going through this too — no one is a care-giving machine, and burn-out in a year or two is a real risk, so get all the care and support you can and schedule some regular "you time" every week alone or with friends, when your life isn't centred around your spouse and his cancer.

It might feel selfish at first, but it's really the opposite: my spouse has been much stronger for me over the past 2½ years because she's taken that time for herself (I wish she'd do it more).

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@lynnie4ever

We met with the medical and radiation oncologist yesterday! My husband will get an injection of Lupron next week and will start xtandi orally daily! Radiation will probably not start until Aug. as the field is to broad right now! He has to start somewhere and we feel this is a good start! I am so grateful for everyone on this site as you all are not only full of knowledge..you also give Hope! Bless you all!

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ter Xtandi failed in 12 mos I am now getting 4th injection of Xofigio or Radium 223

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@melcanada

ter Xtandi failed in 12 mos I am now getting 4th injection of Xofigio or Radium 223

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I am de nova stage 4 Prostate Cancer metastatic in bones only. At diagnosis my PSA was slightly above 32 and I had severe bone pain from metastases in my spin and ribs. I did palliative radiation to my spin (10 cycles) and ribs (5 cycles), and triplet Eligard + Nubeqa + Chemo (10 cycles). After treatment my PSA has remained undetectable and my Alkaline Phosphase has remained as low as 37 indicating no cancer growth in the bone. After my initial diagnoses and bone scan, I have received 2 additional bone scans. Both showed improvement from the first bone scan.

My oncologist says I actually had quadruple therapy. Everyone experiences chemo and medications different, but I agree with one of the earlier posts. Hollywood has created in the mind of the public that chemotherapy is worse than it really is. While Castrate Sensitive, Radiation and Chemotherapy are the only treatments that actually kill cancer cells. Eligard and Nubeqa block the creation of testosterone within the body and starves or weakens the cancer cells. If you handle it, Carpet bomb the cancer up front. Do not allow any micro metastases to hang around. If you can handle it, I recommend 10 cycles of chemotherapy as it will increase Overall Survivability and kill as many micro metastases. The 6 cycles was arbitrarily selected by the medical community.

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WOW thanks

I am on Zolodex so is that as good as Eligard? What did Nubeqa do for you?

I get 4th Xofigio Radium 223 this wed My PSA is up to 16

A Phosphate 37

They say chemo next only if Xofigio does not het it all in bone scan in July Ideas welcome

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@wooldridgec

I am de nova stage 4 Prostate Cancer metastatic in bones only. At diagnosis my PSA was slightly above 32 and I had severe bone pain from metastases in my spin and ribs. I did palliative radiation to my spin (10 cycles) and ribs (5 cycles), and triplet Eligard + Nubeqa + Chemo (10 cycles). After treatment my PSA has remained undetectable and my Alkaline Phosphase has remained as low as 37 indicating no cancer growth in the bone. After my initial diagnoses and bone scan, I have received 2 additional bone scans. Both showed improvement from the first bone scan.

My oncologist says I actually had quadruple therapy. Everyone experiences chemo and medications different, but I agree with one of the earlier posts. Hollywood has created in the mind of the public that chemotherapy is worse than it really is. While Castrate Sensitive, Radiation and Chemotherapy are the only treatments that actually kill cancer cells. Eligard and Nubeqa block the creation of testosterone within the body and starves or weakens the cancer cells. If you handle it, Carpet bomb the cancer up front. Do not allow any micro metastases to hang around. If you can handle it, I recommend 10 cycles of chemotherapy as it will increase Overall Survivability and kill as many micro metastases. The 6 cycles was arbitrarily selected by the medical community.

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Thanks for sharing that. That's great news!

For anyone else reading, I understand that the ALP is a bit tricky to interpret in isolation because it can rise with *any* bone distress, not just an active metastasis. Mine spiked to near the high end of normal at first, probably because of the emergency surgery on my spine to debulk the lesion (which was compressing my spinal cord), the radiation to the site, and irritation from the cement and four metal rods there now holding it together. After a year and a half my ALP came down to mid-range normal and has held there since, while my PSA has remained below 0.01 (undetectable on the ultra-sensitive test) all the way through thanks to Firmagon and Erleada (and 20 rounds of SBRT to my prostate).

So if you have low PSA and normal ALP, great! By my layperson's understanding, that means it's less likely you have any active bone metastases. But if you see the ALP rising, it could be just about anything that can irritate bones, so please don't panic (like I did, a bit), and assume it's new bone metastases. My onco team told me that as long as my PSA was that low, borderline-high ALP was extremely unlikely to be caused by new cancer activity.

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I understand your comment. For me and other having bone metastases, Alkaline Phosphatase and PSA are huge indicators for the management PC. My Alkaline Phosphate was as high as 164 upon initial diagnosis. So for me, watching my Alkaline Phosphatase closely as well as PSA is meaningfully important.

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@melcanada

ter Xtandi failed in 12 mos I am now getting 4th injection of Xofigio or Radium 223

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So my husband went in for his first injection of Lupron today. A nurse at the cancer center said the medical oncologist decided to switch my husband to Leuprolide?? Along with this switch this injection is given every 3 months instead of the Lupron every month? So am wondering if anyone has been on this injection? I guess I'm wondering why this switch was not even talked about before with us? Is this just routine at cancer centers?

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@lynnie4ever

So my husband went in for his first injection of Lupron today. A nurse at the cancer center said the medical oncologist decided to switch my husband to Leuprolide?? Along with this switch this injection is given every 3 months instead of the Lupron every month? So am wondering if anyone has been on this injection? I guess I'm wondering why this switch was not even talked about before with us? Is this just routine at cancer centers?

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They both do the same thing I get Zolodex every 3 months by needle to reduce testosterone the fertilizer of prostate canver

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@lynnie4ever

So my husband went in for his first injection of Lupron today. A nurse at the cancer center said the medical oncologist decided to switch my husband to Leuprolide?? Along with this switch this injection is given every 3 months instead of the Lupron every month? So am wondering if anyone has been on this injection? I guess I'm wondering why this switch was not even talked about before with us? Is this just routine at cancer centers?

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Leuprolide is simply the generic name for Lupron. The nurse should have known this. My husband has had Lupron shots every three or every six months, depending on which facility is giving them, for many, many years.

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