Hidden3 years ago

Follow your pros . I’ve been on prolia which is a lesser dose of Xgeva I’m told. I’m on it for osteopenia from adt and Rt . Many guys have success with bone metzs on Xgeva... Good luck. You have other tools your belt. Keep rolling .. anything to slow APC’s roll on us . Good luck Newyork!🤙🏽

Newyork6264 in reply to Hidden3 years ago

Thanks Whimpy

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NevsMates in reply to Hidden3 years ago

Make sure you have a dental checkup. Do not want to be having teeth removed while on Xgeva (Denosumab)

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Tall_Allen3 years ago

I trust that the recommendation to start Xgeva was based on a DEXA scan and you bone mineral density is low. I trust too that you had a blood test for calcium and Vitamin D. Ask him if you should take Celebrex with it. When combined with Zometa, the combination increased survival by 22%:

ascopubs.org/doi/10.1200/JC...

10 mg prednisone is recommended when you are taking Zytiga for mCRPC. You may want to send him this and discuss switching to dexamethasone:

bjui-journals.onlinelibrary...

I think it's a better idea to alternate advanced hormonal therapies with chemotherapies. Sometimes the chemo in between extends the life of the hormonal therapy.

There was a recent trial that showed that cabazitaxel+carboplatin had better outcomes than cabazitaxel alone.

thelancet.com/pdfs/journals...

And that wasn't even among men who were BRCA+. Your MO is right that if platins work well, PARP inhibitors often work well too, and they are not mutually exclusive. But you already qualify to get Lynparza without a clinical trial, and you will qualify for Rubraca (also without a trial) after you've had a taxane chemo. You might consider doing the chemo first because in 15 weeks (6 infusions) you can move onto a PARP inhibitor.

Another option (since the lung and kidney spots were not metastases)is to do Xofigo next. Xofigo is being combined with Lynparza in this clinical trial that may have a site close to you:

clinicaltrials.gov/ct2/show...

Since you qualify for both drugs, your MO can treat you even without a trial, if he agrees. One of the interesting things about PARP inhibitors is that they may improve the cell kill of radiation (like Xofigo or Lu-177-PSMA).

Newyork6264 in reply to Tall_Allen3 years ago

Yes to the scan, and blood test. Has me on Vitamin D already. I'll ask about Celebrex.

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Newyork6264 in reply to Tall_Allen3 years ago

And as always, thanks for your knowledge.

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HopingForTheBest13 years ago

Zytiga failed after 6 months. Had genetic testing, and was put on Olaparib PARP. Working so far for over 15 months with PSA undetectable. BRCA2+.

Cynthgob3 years ago

Keep us posted. In same position and trying to figure it out.

scarlino3 years ago

I am awaiting confirmation test by drug Mfgr. of genetic mutation to go into trial at MD Anderson for Olaparib and Keytruda. I will post info as I go. My mutation is somatic and is CDK12 which they are finding has more involvement in cancer that has mutated. I agree, follow your pros. I have been on a number of treatments that have worked short term but they buy time. Be blessed!

scarlino in reply to scarlino3 years ago

The confirmation test came back positive so I will be starting the trial this coming week.

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Jrb123 years ago

Xtandi failed after 26 months. I was taking it along with xgevia and lupron shots every 6 weeks. After genome testing, it was determined that I was a good candidate for pembrolizumab (keytruda). I had my first infusion a week ago. I am awaiting results of first blood test. Gene testing is very important.

Magnus19643 years ago

Where do I start. Where are your bone mets? And are they spread out or close together? If in one spot or close together external beam radiation would be the way to go.

If. Your bone mets are spread out zofigo is an option. Has you MO discussed zofigo for bone mets? If not bring it up. This is a once per month infusion. I am going through this now, no side effects. Along with zofigo you should be on an ADT drug. Xtandi would be fine.

Congratulations on other soft tissue mets. That's great.

Have you been tested for genetic anomalies? You will have to be tested to see if your eligible for a PARP inhibitor.

Hope I have given you enough to discuss with your MO.

Newyork6264 in reply to Magnus19643 years ago

You always provide great insight. Mets are spread out. Spine, pelvis and legs. We discussed Zofigo but was kind of in a daze then and don’t remember exactly why not. In my Docs credit he told me go home and review docs notes(posted later today) and let’s talk early next week. I am Brac2 and that is why he is looking at two clinical trials that involve parb inhibitors and another drug. Waiting on o go for that.

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Magnus1964 in reply to Newyork62643 years ago

Maybe you need to consult a radiologist.

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Newyork6264 in reply to Magnus19643 years ago

Am doing that. Thanks for suggestion.

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Newyork62643 years ago

Thanks everyone. Always great answers to my questions.

mrscruffy3 years ago

I have a question for those of you on PARP inhibitors. Did you go to those after exhausting other therapies or did you just jump right in while on a therapy that was working. I have the genetic mutation but am having great luck with Lupron and Zytiga. Although I hate the side effects

scarlino in reply to mrscruffy3 years ago

I can see both sides, but I still feel stay with what is working for you. You have no idea what new discoveries there will be down the line.

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HopingForTheBest1 in reply to mrscruffy3 years ago

I would say definitely keep up with what is working for you now. No need to switch until it fails you..

Was on Zytiga/Prednisone for just 6 months before PSA started rising, from 0,12 to 0,.55 in 3 months. BRCA2+. Switched to Olaparib; was able to get it outside of a clinical trial based on "off-label use". Olaparib was recently FDA approved.

Also continuing on ADT Lupron/Eligard.

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skateguy3 years ago

I would give Xtandi try. I would investigate zofigo (Radium 223). I did one of six shots because a my local MO recommended it, and a MO a Johns Hopkins told me that based on his experience he felt there would be little benefit for me. Plus, I read that Radium 223 can have a long term negative impact on your immune system. I felt/saw no improvement with one shot. I have been living with mPCA for almost ten years. Had surgery, radiation, Lupron, Zitiga, Xgeva (only 1 year), Xtandi, Radium 223 (1), Zometa (very few doses) and most recently 2 doses of Docetaxel (no more chemo). Zometa is a dentist nightmare as this drug could prevent bone from healing, if you ever needed a tooth removed. Xgeve, after about 10 months caused severe fatigue, so I stopped. I was on Xtandi which worked really well until it did not, then Zytiga for a year until it stopped, then back to Xtandi for only a month which held my PSA constant. I switched to Xtandi on my own, because I was in mild pain and I was preparing to skate 50 miles, and it worked. After that skate event (June 2020) I experienced by first dose of Docetaxel which eliminated all pain but the side effects (feeling sick and fatigued) lasted almost three weeks. From my experience, find an MO that recommends protocols to you based on her/his experience with other patients and taking into account your current condition. Stay away from those MO's that give you choices, since that is a sign that they don't have a clue. I've been seen by roughly 10 MO's in the last 10 years and almost all fit that second category. Good Luck

j-o-h-n3 years ago

From one New Yorker to another, Beat the Bastards..........

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 07/11/2020 11:57 AM DST

Newyork6264 in reply to j-o-h-n3 years ago

Sometimes it feels overwhelming but you gotta keep kicking. Kind of like rooting for the Mets, you want to give up but you keep hoping. Lol

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j-o-h-n in reply to Newyork62643 years ago

Hurts, but that's the truth.....

Good Luck, Good Health and Good Humor.

j-o-h-n Saturday 07/11/2020 1:06 PM DST

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sszyszkiewicz in reply to Newyork62643 years ago

“You gotta believe!”

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Newyork6264 in reply to sszyszkiewicz3 years ago

You got it Tug. Words to live by.

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Scoofer333 years ago

My experience with Xgeva has not been satisfactory. I was diagnosed in 2015 with Gleason 9 metastatic prostate cancer and chose Cancer Treatment Centers of America for palliative care, since they informed me I was incurable, and remission was not possible. I went on Lupron for ADT for two years before I became refractory, meaning my cancer had mutated to alter my designation to mCRPC (castrate resistant).

Since I had bone pain Dr. Sangal suggested we try 6 monthly injections of Xofigo ( Radium 223 dichloride). Since I was chemo naive, I did extremely well on this treatment. It relieved the lesion burden but, as expected, did not address my rising PSA. Patients who had previous chemotherapy did not do as well on Xofigo, many of them were unable to complete all six injections because their white blood cell count became dangerously low.

When Dr. Sangal put me on Zytiga plus Prednisone, it immediately lowered my PSA and I began experiencing the side effects of hot flashes and night sweats once again. At one point I accidentally went off prednisone “cold turkey“. My legs filled with fluid and compression socks did nothing to reduce their size. I ended up getting very sick in the emergency room. A few weeks later I realized I had created my own problem and got back on prednisone, which really helped me feel more normal.

My doctor warned me when I first began taking Lupron that the lack of male hormones in my system was going to jeopardize the strength of my bones. He suggested I take a bone strengthener named Xgeva. He warned me that 1 to 2 percent of patients developed a condition called OsteoNecrosis of the jaw, but that it was a necessary drug to strengthen my bones. After 18 months on the drug I began waiving my quarterly injections of Xgeva because I was experiencing jaw pain. An area inside my mouth began having the gums simply dissolve away leaving dead jawbone peaking out from my mouth. I believe I really saved myself from greater injury by stopping Xgeva (later with my doctor’s blessing). I ended up having to have an oral surgeon remove a 2” x 3/4” section of dead jaw bone from the lingual side of my left mandible that was just hanging in there. My #18 & #19 molars are hanging there, with their roots exposed, held in place only by roots embedded in the buccal side of the mandible. For as severe as my Medicine-Related OsteoNecrosis of the Jaw ( MRONJ) is, I’m surprised it hasn’t impacted my quality of life all that much. Please be warned that Xgeva and any bisphosphonates have the potential to do this to you.

Newyork62643 years ago

Just an update. My PSA doubled in a month 14 to28. Had two consults and both recommended same path. Chemo with cabazitaxel followed by a parb inhibitor. Also getting Xgeva injections. They also both said to meet with a radiologist about a couple of the bigger mets. I never thought I would spend so much time in medical facilities. But whatever it take. Got a lot of trout streams to still fish.

Craigslife3 years ago

My husband is BRCA2 and did well for almost 3 years on Olaparib.