Jnyc

Hi my name is Joe I got diagnosed in 2014 my PSA is 125 drop to 0.6 now it's back to over 100 I have back pain in my pelvis is getting worse they have tried everything for me from chemo to Lupron I've tried clinical trials I don't know what to do anymore I'm waiting for a new drug and almost 3 weeks that I've been out of drugs to get approval so I insurance can kick in any advice I feel like I'm losing the battle I'm 46 years old right now is there hope for me please tell me the truth

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  • Hi Joe,

    A while back you posted and gave a phone number in the 714 area code? If you are still in the Irvine, CA area, you might seek local peer support at the Prostate Forum of Orange County.

    prostateforum.org/pf.cfm?id=25

    prostateforum.org/location.cfm

    The nearby Prostate Cancer Research Institute Helpline might also help in some way.

    pcri.org/helpline/

    If you live elsewhere now, this Support Group search tool might help.

    pcri.org/supportgroups

    As for common Standard of Care options for really advanced prostate cancer, at least be sure to discuss all of the options listed on this page with your doctor.

    nccn.org/patients/guideline...

    And if you may be having a hard time with costs and copays for prostate cancer treatments or drugs, this page might lead to some assistance:

    ustoo.org/Find-Financial-As...

    Meanwhile, if you may be in pain at home, or possibly without pain medication, TELL SOMEONE.

    Call your doctor, have them follow-up on prescriptions and any preapprovals.

    Call the numbers listed on your Insurance Card, or in their brochure.

    Call whatever pharmacy you use and get them on your team, too.

    Now, with all that out of the way....

    I am so sorry, Joe, that you are feeling so bad right now. Being in pain is never easy. Not being sure of your options for some next treatment is never easy. You may or may not want to seek a second opinion about what to do next. Do you have a close caregiver or some other people who might help you?

    In a book written not long ago, there were five questions that were recommended to be asked of people with advancing disease or old age:

    1. What is your understanding of your current health or condition? 2. If your current condition worsens, what are your goals?

    3. What are your fears?

    4. Are there any tradeoffs you are willing to make or not?

    And later,

    5. What would a good day be like?

    Then, let the ensuing open discussion inform real shared medical decisions about the upcoming treatment option or, eventually, the dying process.

    This PBS Frontline documentary was later made, based on many ideas in the book:

    pbs.org/wgbh/frontline/film...

    There is always room for hope and "healing", even if there may be no medical "cure" of the bodily disease. A subtle difference there, between "healing" and "cure". Hugs help, too.

    Just some links and thoughts,

    Charles

  • Joe,

    Here are a few more thoughts I'd like to add to Charles' excellent reply.

    You may be running out of options, a horrible thing to happen to a man of your young age. I would like to extend my deepest sympathy to you and your family. I hope that you are able to find good pain relief and are able to come to terms with your situation and make the best of the time left to you.

    Best of luck.

    Alan

  • Get a hold of Dr. Charles Myers in VA. He is an expert in putting together drug combinations that work when everything else has failed

  • Gus,

    I think Dr. Myers has retired though he may have associates that are continuing his practice.

    Alan

  • There is hope!!

  • Thank u for the feedback

  • Would medical marijuana provide a respite from stress and pain? Google RSO if you aren't familiar with that.

  • Most definenatly, one has to have an open mind to it..Adjustment in minute doses are needed to build tolerance for most people. It can level you at first..

  • Sorry to hear about to hear about your challenges. Your can tell this is a caring community and that we all want to help each other

    I am 55 and was diagnosed 2-years ago with stage 4, PSA of 227 and 4+4=8 Gleason I've been fortunate so far, but this illness is with you every day. And we are all hope by for that illusive cure. I've decided to keep a positive attitude and fight it as long as I can. Someone in this community once wisely told me it's not how many days a you have left, but what you do with the days you have. Good advice for us all.

    Regarding your illness, make sure you are seeing someone who specializes in prostate cancer. There appear to me lots of new combinations of drugs and approaches that work. And radiation can help a lot with the pain, if you have not had that already. A real specialist should know about all your options. I also always recommend reading Dr. Patrick Walsh's book "Guide to Surviving Prostate Cancer." I was lost for a year until someone recommended it to me. It does a nice job of explain all the current treatment options. And can guide you in your discussions with your doctor.

    We will all be praying for you. Don't lose hope! Miracles happens all the time. :)

  • Very sound advice indeed.Thanks for the book title..

  • Can't give up. You have to persevere, but live a healthy lifestyle. Your young age might help you get through .Truth be told, you want to do anything that will improve your immune system..Lots of clean pure water is always paramount.There are some naturalpathic aids that might help this type of pain..DMSO and others..of course not covered by insurance,and it can be costly to continue long term Vit. C & B's and intervenors treatments.Im a proponent and a naturalpathic patient for 2 yrs since my diagnosis.A yr ago we could see no visible signs.Had testing and I'll know Monday this yrs results..I feel and pray that they are good again..Accupunture works for many also..Do not give up on hope and fighting for yourself..For most of us this is a life changer in every way.Find happiness where you can and try anything to make yourself feel better..Good luck!

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