The bad news just keeps on coming

Hello, all. To briefly recap, radiation 2008, recurrence, salvage surgery 2013. Lupron off and on to present. PSA in the 30s, but no bone mets so far. Planned to return to MDA in Feb for extensive testing.

I learned yesterday that I have a TP53 genetic mutation. From what I've been able to piece together, that means much worse outcomes. Joy.

Anybody have any knowledge or opinion on this?

Many thanks,

John

8 Replies

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  • John,

    A 2013 Cornell study seems to suggest that the mutation is not uncommon in advanced PCa [1]:

    "tumor protein p53 gene (TP53) mutation (40%)"

    Which would place many here in the same boat.

    The question is why the test was performed? How will the result affect your treatment?

    -Patrick

    [1] ncbi.nlm.nih.gov/pubmed/229...

  • I got the option to get genomic testing at no cost as a trial. It seemed like a no-brained to get testing that could provide some actionable information. For this mutation, there's not a particular treatment; we will just go harder and faster.

  • How did you find out about the Mutation--were you totally Gene Mapped?

    Nalakrats

  • I don't know, as I haven't seen the actual report. I would assume that's the case. The nurse shared that tidbit with me over the phone. She called it "an alteration"; I had to look it up to see that meant a mutation.

    I was hoping that the genomics would give me some actionable information, but that doesn't seem to be the case.

    However, based on this one piece of information, I'm enrolling in a trial in January. No actionable information other than I have a bad gene and no point in delaying the fight.

    I am enrolling in the DYNAMO trial at MD Anderson. Specifics here: mdanderson.org/patients-fam...

  • I am aware of the drugs they will be using in combination. One of the Drugs is on my list against one of my mutations PTEN--I do not need now--just doing my research--for if i need things later. Good Luck

    Nalakrats

  • John,

    The PTEN mutation is a common mutation in many different cancers, including prostate cancer. These genes are responsible to prevent other mutations, so a mutation there probably means that you have lost some control of your ability fight your cancer. This might be the very reason you have prostate cancer.

    The problem is that at this moment we do not know what to do with this type of information. There are a number of studies being planned and that are on-going that are attempting to provide us with information on what specific gene mutations will mean for us in the clinic. In other words, if a man has a specific mutation he may or may not respond to a specific drug. If we learn this type of information we can then skip the drugs that don't work (as well as the side effects) and just take the ones that will work.

    Learning about the various mutations might also help us to better provide a prognosis, but we are not there today. Bottom line for you, this is good information for you to know (get the report in writing so that you can confirm what the nurse reported) and to do lose any sleep over the information.

    Joel

  • Sorry don't have relevant medical knowledge, but feel the discouragement and wishing you the best.

  • On the last day of 2016, my onc sent me an email that began with "Good news!" He had wanted me to go in a trial for nanoparticles of taxere, but that had been unavailable to me, since I'm "taxene naive". However, they've changed the protocol and it may be available now. Praying that it happens.

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