Prostate removed, Lupron, chemo, Zytiga & prednisone - what are next option?

[RPB6]

I had a radical protestectomy 7 years ago. Gleason scores 9s & 8s in 23 of 24 sections tested - PSA 11. On Lupron for 1 1/2 years & PSA back down to .2. 1 1/2 later PSA began going back up. Bone scan & cat scan showed stage 4 bone metastasis in multiple areas of pelvis, sternum & ribs. Had 6 months of chemo (taxetere) & on Lupron for rest of life. In October, 2017, PSA began going back up. Now on Zytiga & prednisone & PSA down to .13. From the posts I’ve read here, this seems to be pretty much the regular standard of care & dr guesstimates I have about 2 1/2 more years. I’ve been very active but now have problems in my left hip & leg - probably from arthritis due to treatment. I would like to know if anyone knows of anymore aggressive treatments from this point on? I’m being treated at Vanderbilt in Nashville & have been very satisfied with my care, but would like to fight this in every way possible. Thanks

[Win-Pir]

I have been treated at Tennessee Oncology near Vanderbilt. My disease stage and met development is similar to yours and so is my treatment so far. My hips , legs and knees ache as well as both wrists. I also have neuropathy of feet and fingers. Maybe someone in this group will attest as to whether chemo can actually cause our areas of discomfort and offer treatment other than cover this pain with the common pain meds. My neuropathy was almost certainly caused by taxotere.

[Hidden]

I'm becoming castrate resistant now and my doctor has suggested doing Radium 223. If you have bone mets, it works well on those. My doctor told me that many people wait too long before doing it so they don't get the maximum benefit. It can add quite a bit of survival time. I'm probably going to do it before Zytiga as it's not recommended to do at the same time. Something you can discuss with your doctor for future use.

[RPB6 in reply to Hidden]

Thanks - this is helpful & I will discuss with my oncologist.

[Hidden in reply to RPB6]

I have done 7 rnds of Chemo (Taxoter) followed by 3 rnds of Radium 223. Plan was for 6 but I developed liver Mets which, apparently, are a go-nogo point for 223. Now sitting on my latest biopsy that validated prostate cancer in my liver. Still don’t have the Baca (?) results but will need them to apply for a program with either Moffitt or Dana-Farber. I’ve been waiting 6 weeks. Of note, I feel fine. I take 30 mg of Morphine twice a day along with Lyrica to fight my neuropathy which, I too believe, came about due to Taxoter.

[Hidden in reply to Hidden]

It's good that you were able to at least have 3 rounds of Radium. One of the articles I read was that the chances of developing visceral mets increases with treatment and that's one of the reasons they recommend doing Radium early instead of waiting.

Hope you find an effective treatment. There might be some actionable genetic mutations found in your biopsy tissue. Wishing the best for you.

[Charlesd]

My husband treated at Vanderbilt ingram by dr david chism (ongologist) on Kpt8702 trial. He lost his battle on Feb3, 2018 but you may be eligible for one of the trials at vandy-ingram center. best wishes & prayers. He was 82.

[RPB6 in reply to Charlesd]

Sorry for your loss. I’m have been asking about trials, but as long as Zytiga is still working, oncologist says it is best to stay on this course. Thanks

[Jscjac]

My husband is also a patient at Vanderbilt (Dr. David Chism is his oncologist.) He is on the Lupron, Zytiga and prednisone protocol. He is Stage 4 metastatic. PSA is “undetectable” at this point. We are willing to be as aggressive as possible, but there was a consensus within the Tumor Board that this the best course at this time. We like Dr. Chism very much. That being said, we are willing and able to seek more aggressive/cutting edge treatment at any other facility if it makes sense to do so. Johns Hopkins, Memorial Sloan-Kettering and MD Anderson are among the most highly recommended for prostate cancer from my research. And certainly, there are many others. Wishing you all the best.

[RPB6 in reply to Jscjac]

I’m not familiar with the term “Tumor Board”. Excuse my ignorance, but I’m just wondering what that means. Thanks!

[Jscjac in reply to RPB6]

Hi ! Sorry for the delay in answering. Dr. Chism told us that a group oncologists at Vandy meet,(weekly, I think), to review and discuss cases. I believe he referred to it as the “Tumor Board”. Honestly, I was still in shock from the diagnosis, so I can’t swear that’s what he called it, but at any rate, we were somewhat reassured that this group of oncologists was in agreement on Jeff’s plan of treatment.

[Charlesd in reply to Jscjac]

I came across your post & hope you all are doing ok. I knew dr.Chism had left Vanderbilt in December 2018.

[Jscjac in reply to Charlesd]

Hey, Charles. We had our first visit with Dr. Nancy Davis on January 24 (at Vandy). She was dynamite ! She had clearly familiarized herself with Jeff's chart and was open to all of our questions and thoughts/fears. It was a most satisfying visit. Although her style/manner is quite different from Dr. Chism, we are completely comfortable with her. Thanks for checking in and I hope all is well with you.

[JamesAtlanta]

Good question. That’s when the doctors discuss their patients’ cases with their peers to align on a treatment plan. When I was diagnosed 3 years ago, they took my case there to confirm that I would benefit from early chemo (the Stampede Study had just been published).

[larry_dammit]

Sounds like there doing what most would, I have the hip and leg pains as well. If you can get out and walk do a few stairs. The medicines seem to settle in my Butt . Fight the good fight

[Mathes72]

My story is about the same, get a new onc.doctor, there is provenge,radium223,jevtana,xtandi,xgeva walk go to a gym,drink a lot of water,maybe New treatments,do not think about giveing up,good luck

[Godschild62 in reply to Mathes72]

Revenge is docetaxel another IV chemo, which is used after Zytiga fails. Standing is pretty much the same as Zytiga, so if Zytiga fails they most likely will not change to Xtandi. Xgeva is used to treat the bones, it's not a first line treatment to treat PC. It's used in conjunction with Zytiga or IV chemo. Radium 233 or Provenge would probably be the only two other options at this point. Wishing y'all the best!

[Godschild62]

My husband's cancer progressed quite quickly. He went on Zytiga only 4 months after finishing docetaxel. He only was on Zytiga for a month before we learned his PSA went from 31-688. Please make sure you check and see that's it's really the arthritis bothering you and not bone Mets. Zytiga should have bought my husband 2-3 years, it did nothing for him. The so called muscle pain in his back he thought he had was actually the cancer metastasizing to more vertebra and his ribs.

[George71]

You may consider lu-177 there is a trial in Houston -- you can go to Germany

bookinghealth.com/programs/...

[RPB6]

Thank you all for all of the responses! They have giving me helpful information & the support is amazing!

[j-o-h-n]

"dr guesstimates I have about 2 1/2 more years." Come on now - give me a break. Forget his guesstimates, you'll be around for many many more than 2 1/2 years.

Good Luck and Good Health.

j-o-h-n Wednesday 07/04/2018 6:53 PM EDT

** Happy Birthday America **