Dx 3/2017 PSA 363 with bone mets - Advanced Prostate...

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Dx 3/2017 PSA 363 with bone mets

CaregiverWife profile image
9 Replies

Husband srarted Bicalutamide March 21 & Taxotere March 27. April 25 PSA was 10. June 27 it was 12. Ended Taxotere July 12. Aug 2 PSA was 19. Dr out him on Xtandi - started 8/25 and PSA dropped to 16 in 2 weeks but last one taken on 10/3 it jumped up to 31. Oncologist has said he's done all he can and has teferred us to Moffit in Tampa. Have an appointment just before Thanksgiving. We also found in March that he is diabetic and recently that he has non-alcoholic cirrhosis. We have our first appointment with a Hepatologist next week. Oncologist did a marrow biopsy so we know there is no cancer there - and none in the liver from that biop. Right now my head is spinning trying to understand it all. The pain is back in his hips - side effects of Xtandi or mets?? Don't know. He will have a PET scan soon. Dr is getting that scheduled now.

Also getting Procrit shots every week

Xgeva every 4 weeks and

Zoladex every 12 weeks.

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CaregiverWife
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9 Replies

Stay positive. Did you omit Lupron or Eligard? In all cases that I am aware of the first thing is an injection of Lupron with Casodex for PSA flare.

I really can't comment of the Taxotere infusions. The chemo protocol which I underwent almost 14 yrs ago for metastatic prostate cancer was much different. I underwent a six month trial which included weekly Taxotere infusions with two orals and weekly Adrimyacin infusions with two other orals alternated each week.

I wish your husband a full recovery from this terrible disease.

Gourd Dancer

Caring7 profile image
Caring7 in reply to

You should see a specialist practice because if all your husband has had is what you listed -- he's missing a lot. That's hardly all that can be done!

As the above post noted -- he should absolutely be on Lupron injections (with accompanying Zometa or Xgeva -- to counteract bone issues). The early chemo is now standard of care for advanced prostate cancer. So not bad that he had that. But -- should not be on Xtandi until the Lupron + bicalutamide (Casodex) fails (progression of disease while castrated -- so very low testosterone). As our oncologist/specialist (UCSF) puts it -- it's like the pony express, and you want to get as much mileage out of each pony as you possible can.

But maybe you were just giving the most recent treatments?

My husband, dxd at age 51 with Stage IV, distant bone mets, and pretty much a raging tumor at first. Here's the course he followed.

Lupron with Xgeva (couldn't tolerate Zometa), add Taxotere 6 courses. Provenge (immunotherapy), spot radiation on the spine, RA223/Xofigo. Finally seemed to gain some control at that point, but in the meanwhile had gone castration-resistant, and that is when he switched from bicalutamide to Xtandi (now almost 2 years -- thank goodness for good insurance!!) There are other courses, but something along these lines is not even "all that one can do."

We like and trust our oncologist but we still use a specialist for consults and see him every 6 months or a year in SF (we live in Hawai`i). Our oncologist is happy to have the expert weigh in -- and that's how it should be.

I hope that you get some better answers for your husband soon. And -- as a fellow caregiver -- be sure to take care of yourself too.

Scruffybut1 profile image
Scruffybut1

I am also diabetic but have known for 30 years without problems. BUT all PCa drugs can not only aid in the development of new diabetics they also demolish the regime of existing diabetics. For the past 18 months my diabetic specialists (20 years with me) have struggled to get my glucose levels back where they were, low. Now far too high and this damn cancer loves to feed on glucose. Swap one problem for another as PSA constant for 14 months @ 0.03. my hips have no cartilage, possibly age and too much sport. Good luck with your progress, we are all together.

eggraj8 profile image
eggraj8

ADT (Lupron or Firmagon) was the first try for me. I have now added Taxotere and Carboplatin which are infused every three weeks. Recently I have XGEVA added for bones. Has worked for me for nearly a year. My liver, lung and bone mets were found using CT and bone scans.

Best wishes on your journey.

CaregiverWife profile image
CaregiverWife

Thank you for the replay and suggestions. We are on the road making our way home after visiting all family in Florida. But he can only sit in car for an hour or so at a time because of the hip pain. I will look into all of these when I can sit down with pen and paper. I did forget to say he also gets a Procrit shot weekly, Xgeva monthly and Zoladex every 12 weeks. The only 2 times testosterone was tested was 6/27 it was 31 and 9/12 it was 38. Thank you again everyone. We have a lot to learn. Have sort of been blindly following his Oncologist.

Cancer09 profile image
Cancer09

I agree there are many more treatments to try ..do you live near Moffit ? Don’t give up ..be positive and never give up hope ..I too was a caregiver ..

CaregiverWife profile image
CaregiverWife in reply to Cancer09

We live in the mountains of NW SC about 12 hours from Moffit. Our sons & their families all live within 2 hours of Moffit. Our Oncologist said they have the best trial that could help but getting into it will be tough because of his cirrhosis and age. He's 70. We don't even know what stage the cirrhosis is. Dr had ordered liver biop to rule out liver cancer. Until this year he was in perfect health - or so we thought. Never drank, never smoked. Walked a lot. And is still working about 30 hours a week because he loves what he does. We were kind of blindsided by all of this - but keeping the faith and taking it one day at a time.

Cancer09 profile image
Cancer09

One day at a time doesn't hurt to see Drs at Moffit. Did they do a gene study. That takes weeks. Xofigo was for the bone Mets. helps bone pain but liver issues may be a Prob my husb had 2 spots. Never smoked or drank either. Take a note book write it all down they may Sugg other chemo treatment too if no studies are avail. 70 isn't old. Today my husb has been gone a year. Keep fighting we did we lived in ma and fla. Great treatment

ronnie1943 profile image
ronnie1943

Hi, just got this on my email, my name is Lynn. My husband, had gone almost nine years after huge tumor taken out of left arm.PSA at that time was 483 Stayed on casodex, Lupron needle every three months. Cancer came back this past year with a vengeance. Tumor blocked kidney tubes, went into kidney failure, had nerostomry tubes for six months, taxotere for twelve months, 38 radiation treatments. After all that we just got home from the hospital, ha I g a suspicious lymph node removed?? It was very deep and what should have been an overnight stay and on,y four inch incision ended up a nightmare. Cancer is not a one size fits all, everyone is different, watching this like yourself is a scary thing and heartbreaking, I never give up the faith, I'm kind of new at this technology thing so forgive my mistakes. I'm seventy three and received an iPad from my daughter in law as a gift, trying to teach myself?? Found this site by accident?? But so happy I did, so many wonderful caring people. It helps to know we are not alone !!

Best wishes and prayers coming your way! 🙏🏻

Sincerely, Lynn

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