Metastatic prostate cancer and Zytiga is probably failing.

[chalaan]

Sister of brother with advanced prostate cancer. My brother is 68 years old and was diagnosed in 8/2015. His PSA was at about 1200 at one point. Casodex worked for a couple of months and now he is on Zytiga. I am hoping to get him into Dana Farber soon

[Neal-Snyder]

Chalaan, what do you know about any mets that have appeared on your brother's scans? What's his PSA now?

[chalaan in reply to Neal-Snyder]

Hi,

Here are my brother's (name Gary) stats as I know them. In order to give more precise numbers, I would have to investigate, but for the question that I have, this synopsis should be sufficient.

diagnosed: 9/2015 with advanced prostate cancer. PSA was about 600 and Gleason score was 9. Bone mets in spine including cervical and ribs.

He had 'palliative radiation' for at least the cervical met which was the largest and this seemed to be effective. He went on Casodex and that dropped his PSA and so by December 2015, it was at 40. He was also put on Lupron; either every 2 or every 3 months, and continues with this. He is also continuing with Zometa.

By 3/2016, it appeared that the Casodex was failing and his PSA rose to 1100, the Casodex was removed and he was started on Zytiga + prednisone. The first month, his PSA rose to 1200, the second month it dropped to about 350, and the 3rd month it was at perhaps 100 or a bit lower.

Beginning at about month 4, his PSA began to rise to about 350 on 12/20/2016. Bone/pet scans were done and it showed increased bone mets. Nothing was detected in lymph or anywhere else aside from his bones.

We had an appointment last week and his PSA is now at 600 and the doctor suggests XTANDI (I expected this).

His doctor is a general medical oncologist and it seems to me that he is following a standard protocol. At that meeting, I brought up the Metformin and VT-464, and he dismissed both as not proven.

Finally, going down my list, I brought up Xofigo and he said perhaps a good idea. It seemed to me that Xofigo is promising, but I have read varying results about its efficacy.

Given that I believe that this doctor will stick with only a standard protocol and also that Gary is not in the best mental state and will NOT be advocating for himself.

I would like to take Gary to Dana Farber, Boston. My goal at Dana Farber is to get some broad discussion as to my brother's options. I do not know enough to be a great advocate for 'next steps', but I know enough that a second opinion is warranted.

My questions:

1. any comments on the Xofigo?

2. any recommendations for a doctor at Dana Farber,

In a previous post, I asked for some recommendations for a doctor at Dana Farber as I will probably have only 1 shot at this. I can request a specific doctor for this appointment and I would like to do that, otherwise I will get whomever they choose. Perhaps it does not matter.

I have learned a lot from this forum; it is a great source of information.

Any suggestions are welcome.

Thanks.

[Neal-Snyder in reply to chalaan]

Chalaan, all that info will give people a lot more to work with.

As you're realizing, some doctors only want to do what's been proven in clinical trials & is FDA-approved for a given purpose. That's what I see with oncologists at my Kaiser Hospital. So I asked my primary care provider, an internist, for Metformin & got it that way.

My med onc says there are trials of Xtandi & Xofigo together, I believe, & there may be some findings.

I'm on the West Coast. I can't tell you anything about Dana Farber. Hopefully someone can give you a good recommendation there.

To go back to what I was saying above, if you can do this, in terms of expense & Gary's cooperation, you may want to see a leading oncologist who's willing to think outside the box. Charles "Snuffy" Myers, also back East, comes to mind, if he's taking new patients. You can search for him on this site & see what people have said.

[chalaan in reply to Neal-Snyder]

Neal-Synder,

Yes, this is what I have come to believe with this doctor; he will not diverse. I asked him for a test and then a prescription for vitamin-D, which he did, but I think that this was a slight annoyance to him. Unfortunately, my brother Gary, and also our brother Mark are not convinced that DFarber can offer anything more.

I have seen some posts about Dr. Myers and will take another look, but from recollection, it seemed that he got some mixed reviews.

I am curious as to what you think about Metformin and if you believe that it is helping you. I will be making that pitch at Dana Farber if I get there?

Thanks for the quick response.

Annette

[Neal-Snyder in reply to chalaan]

Annette,

There's enough data on Metformin that a urologic oncologist I emailed with called it "interesting." I already knew she wasn't ready to recommend it, but that's what she said when I asked her to think of it for someone with terminal PCa.

My own experience: When I started taking 500 mg twice a day, I had a PSA decrease. Same when I increased to 1000 mg twice a day.

Do a search on this site for Metformin & see what Patrick O'Shea says. But you might want to take it to Gary's general practitioner rather than Dana Farber. I took the info from Patrick O'Shea's posts to my regular doctor.

Some VERY smart advanced PCa patients on this site go to Dr. Myers, even from a long distance away. You're looking for an oncologist who is more open to new possibilities than those who just toe the line, despite the seriousness of the patient's situation.

Probably you'll hear more from Joel after the weekend. He knows far more than I do.

Neal

[chalaan in reply to Neal-Snyder]

Thanks.

I did take it to his onc and he said 'no not approved'. Then I asked about the

VT-464 which I thought looked very interesting and he said 'no, not approved'. That, then, is the way his onc is going to go.

There is someone on this site who went to Dana Farber. I will to try to find him again. I am not yet used to this website, but I will see if I can post that question.

[Neal-Snyder in reply to chalaan]

All you need to do is do a search for Dana Farber. You'll get him & anyone else who mentioned it. The search box is at the upper right, but not when you're in a discussion like this. You can search for Metformin, Xtandi, Xofigo, Charles "Snuffy" Myers--anything or anyone you want.

[Neal-Snyder in reply to Neal-Snyder]

"Search Advanced Prostate Cancer" is even at the top right of this page, just not when you're in a message box like I am now.

[eggraj8 in reply to chalaan]

Sometimes standard treatment is best, although there are several standard treatments. I have bone, liver, and lung metestatic PCA. I am currently on ADT (shots) along with chemotherapy in the form of Taxotere and Carboplatin. This seems to be working for me at this time.

[JoelT]

Chalaan,

Welcome to our group. This group can be a lot more helpful if you are able to give us all the information you have about your brother's cancer.

Joel

[chalaan in reply to JoelT]

Hello,

I am replying to you with a copy of my reply to Neil-Snyder.

Hi,

Here are my brother's (name Gary) stats as I know them. In order to give more precise numbers, I would have to investigate, but for the question that I have, this synopsis should be sufficient.

diagnosed: 9/2015 with advanced prostate cancer. PSA was about 600 and Gleason score was 9. Bone mets in spine including cervical and ribs.

He had 'palliative radiation' for at least the cervical met which was the largest and this seemed to be effective. He went on Casodex and that dropped his PSA and so by December 2015, it was at 40. He was also put on Lupron; either every 2 or every 3 months, and continues with this. He is also continuing with Zometa.

By 3/2016, it appeared that the Casodex was failing and his PSA rose to 1100, the Casodex was removed and he was started on Zytiga + prednisone. The first month, his PSA rose to 1200, the second month it dropped to about 350, and the 3rd month it was at perhaps 100 or a bit lower.

Beginning at about month 4, his PSA began to rise to about 350 on 12/20/2016. Bone/pet scans were done and it showed increased bone mets. Nothing was detected in lymph or anywhere else aside from his bones.

We had an appointment last week and his PSA is now at 600 and the doctor suggests XTANDI (I expected this).

His doctor is a general medical oncologist and it seems to me that he is following a standard protocol. At that meeting, I brought up the Metformin and VT-464, and he dismissed both as not proven.

Finally, going down my list, I brought up Xofigo and he said perhaps a good idea. It seemed to me that Xofigo is promising, but I have read varying results about its efficacy.

Given that I believe that this doctor will stick with only a standard protocol and also that Gary is not in the best mental state and will NOT be advocating for himself.

I would like to take Gary to Dana Farber, Boston. My goal at Dana Farber is to get some broad discussion as to my brother's options. I do not know enough to be a great advocate for 'next steps', but I know enough that a second opinion is warranted.

My questions:

1. any comments on the Xofigo?

2. any recommendations for a doctor at Dana Farber,

In a previous post, I asked for some recommendations for a doctor at Dana Farber as I will probably have only 1 shot at this. I can request a specific doctor for this appointment and I would like to do that, otherwise I will get whomever they choose. Perhaps it does not matter.

I have learned a lot from this forum; it is a great source of information.

Any suggestions are welcome.

Thanks.

[JoelT in reply to chalaan]

Xofigo is an excellent drug, but will only treat the bone mets. I don't know what you have read that discourages you about Xofigo. I don't know anything about VT-464.

Metformin is a very cheap drug used to treat diabetes. It has shown some activity n prostate cancer, not proven in clinical trials for prostate. This does not mean that it doesn't work. It has a relatively minimal side effect profile, so it should be reconsidered.

His cancer is very aggressive and really needs to be treated by a medical oncologist, but a general oncologist. Dana Farber is an excellent place. Perhaps Jack W, if he is reading this, will suggest a doctor.

Joel

[Neal-Snyder in reply to JoelT]

Joel, I was certainly glad to see you here, since you're in a much better position to help Chalaan & Gary than I am. In your experience, if there's too little info in an initial post, is anyone new likely to get involved on Day 5 when there is good info? Or have people generally moved on? Again, I'm glad you're here.

Neal