Advanced Prostate Cancer
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Asking specialist about next steps

My husband just finished 5th cycle of docetaxel. We are heading to LA for a follow up consult with Dr. Mark Schulz to ask about next steps. Wondering what questions people think are the best to ask at this point. Husband is 47 and still castrate sensitive dx Feb 2017. On Lupron casodex and finishing up 6 cycles of docetaxel.

Thanks

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I'm pretty much in the same situation, diagnosed in February 2017, on ADT and about to finish chemo, 6th cycle in a week.

What I will be asking at this point is about starting Zytiga now since the STAMPEDE trial has shown favorable results to early use of Zytiga. Early Zytiga has an additional survival benefit similar to doing early chemo.

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I would want to know my Gene Mapping, to know what Genes have mutated, so that you would know from the test, which targeted drugs are available now, for future use, if needed. I have been mapped, and since doing this last year, 2 new drugs were approved by the FDA, against my BRCA-2 Mutation. There are now 3 drugs that can be used. But I am not needing them, as of now. It gives comfort to know what next steps might be needed, along the Journey. Most docs. will tell you, do not worry, wait until there is a cause that needs attention. I like to know all the options for the future, if needed.

You are seeing an excellent Doctor, IMO

Nalakrats

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Which genetic test(s) did you use? I'm curious because I'm thinking about doing it down the road.

I asked my doctor about it at a recent visit and the doctor said they don't do genetic testing because it doesn't change the treatment. That comment left me scratching my head.

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Gregg,

Nalakrats posted something here along these lines a while back:

healthunlocked.com/advanced...

Charles

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Thanks Charles

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Go to Foundation One. Com, get their 800 number and call. An advocate will pick up the phone usually in under a minute. They are trained in Gene Mapping, and how it relates to Pca. And they will give you all the reasons why both you and your Doc. should know what your mutations are. Certain mutations, will indicate from past experience to not use certain drugs, or which Chemo agent might be best. If on Medicare, it is paid for. If not old enough and with insurance, you can find out what your cost would be. They will look at 340 genes, and find the ones that have mutated.

Personally, and you did not hear it from me--I would fire a doctor, for making that kind of comment. My Oncologist is Head of Prostate Research and Clinical Trials at the Levine Cancer Institute, in N.C. He applauded me for having had it done. I did it on my own--and then brought the results to my Urologist and Medical Oncologist, the one I just described above. We outlined 3 possible targeted drugs that will be useful for me in the future, even though we do not have need of them now. I like to know I have ammunition, and where it is stored.

Nalakrats

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Thanks. You would fire your doctor for making that kind of comment. I am coming to the same conclusion myself. I interpreted the comment to mean that a change in treatment would not be indicated regardless of what was found if genetic testing was done. But maybe the doctor meant that they just wouldn't change the treatment anyway, even if they knew the genetics. Either way, I can't go along with it. I am in the process of changing doctors, for this and other reasons.

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Friend, you have no Idea---You have to be a very informed Consumer of Prostate Cancer Treatment. Meaning you need to be your own advocate.

Here is how it works with me. Now I do not expect most people to be as fully researched as I. As a scientist/researcher--retired. I have a certain way of working, I did over 800 hours of research, on all facets of Pca. To my Doctors I tell them that I make the final decision---if you cannot live with that, then I will find someone who will let it be me to make the decisions, or agree with the ones being put forth. I call for my own drugs, and protocols--no one says no to me. No one!

I.E. just happened this week---saw my Urologist. I introduced him to a particular drug. He did not know how to write the script. He called over to an Oncologist who verified my instructions. This was 6 months ago. This week he told me he is putting a lot of his Pca patients on the drug, I introduced him to. Who is the Doctor here?

We need to be in control---if I screw up, it is my fault. If my Doctor screws up, we sometimes do not even get a sorry--we get excuses.

Nalakrats

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Completely agree. No one cares more about your life than you do. Another reason I'm changing doctors is that my current doctor tries to make decisions without discussing it wth me. Our doctors are advisors and are part our team, but we make the final decisions. Any doctor that can't work that way is not going to be my doctor.

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