Please Help Me!

MLKisner
MLKisner Member Posts: 14
in Prostate Cancer #1
My husband has stage IV prostate cancer with bone mets. He was diagnosed last year on New Years Day, He was on Bicaultimide and Lupron Injections when the spread affected his stomache lymphnodes causing his PSA to rise to 14. They said his cancer was being aggressive and they started him on Zytiga with Prednizone it has been 9 weeks We just got home from Cleveland Clinic and the Dr. told him that his PSA was 41, he told us Keith would die from this we just didn't know when. We have a 3 year old son and I am loosing my mind. Please, if you can offer any insight, hope. Please, I am listening. They took away all our hope on this visit.

Comments

  • Kongo
    Kongo Member Posts: 1,166 Member
    #2
    Sorry
    MLKaiser,

    I am sorry to read of the poor prognosis your husband was given. It is true that men with Stage IV prostate cancer exhibiting your husband's symptoms seldom recover although many men do life for extended periods of time.

    While the Cleveland Clinic has an excellent reputation, the medical team there is not giving you the hope you are seeking. Perhaps it is time to seek out other solutions and discuss your husband's condition with other experts. You may also want to research clinical trials and experimental procedures.

    This prognosis, while shattering, also provides your family time to make choices about how you want to spend your remaining time together. None of us have any expiration firm expiration or "best used by" dates but eventually, we all succumb to something ... we just don't know when.

    I hope you find some hope in searching out other possible treatment choices.

    Best wishes to you and your family.

    K
  • Beau2
    Beau2 Member Posts: 261
    #3
    Snuffy Meyers
    You may want to try googling, "Snuffy Meyers videos". He's a doctor that specializes in PCa, and is the best I know dealing with metastatic PCa. Also, he has PCa and can relate to what you are going through. Anyhow, you can find a lot of his videos on Youtube and they do give you good advice on metastatic PCa.

    Hope this helps, best wishes to you and your family.
  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    #4
    mlkisner

    You have received excellent advice. Basically you need to seek out the best medical oncologist that you can find and afford, one who specializes in prostate cancer; there are only about 50 in the United States. Dr. Myers is a great choice. As KIongo mentioned look for clinical trials,; I think if you call the american cancer society you  will receive direction

    Let us know where you live, some of us may be in or familar with your area for expert medical help.

    Also good idea to seek out face to face prostate cancer support groups in your area for direction and emothonal support.

    There is always room for hope and optimism.

     

     

     

  • ralph.townsend1
    ralph.townsend1 Member Posts: 359 Member
    #5
    Blood test

    One thing that MD Anderson told me in starting treatments, is that it 's very important for the blood test to be perform at the same location. Your normal doctor might use multible locations to run the test and the count could vary. But your husband psa is very highEmbarassed

  • MLKisner
    MLKisner Member Posts: 14
    #6
    ralph.townsend1 said:

    Blood test

    One thing that MD Anderson told me in starting treatments, is that it 's very important for the blood test to be perform at the same location. Your normal doctor might use multible locations to run the test and the count could vary. But your husband psa is very highEmbarassed

    His Testing

    His testing is all done at Cleveland Clinic, Dr. Jorges Garcia. We live in Fairmont WV. His PSA when we found out was a 59, dropped to 2.4 then up to 14 now at 41.  There has to be more to do. I am not letting this man go. The good lord has to know that our baby needs him and your families need all of you.

     

  • hopeful and optimistic
    hopeful and optimistic Member Posts: 2,339 Member
    #7
    MLKisner said:

    His Testing

    His testing is all done at Cleveland Clinic, Dr. Jorges Garcia. We live in Fairmont WV. His PSA when we found out was a 59, dropped to 2.4 then up to 14 now at 41.  There has to be more to do. I am not letting this man go. The good lord has to know that our baby needs him and your families need all of you.

     

    Dr. "Snuffy" Myers , address and appointment number

    http://www.prostateteam.com/appointments.php

    Address and appointment number, Dr. Myers

    Appointments

    Whether you’ve just had your first high PSA reading or have been living with prostate cancer for decades, an appointment with AIDP is the first step toward a more proactive, positive approach to disarming your disease. Expect to spend several hours with Myers and the AIDP staff during your first meeting. Submitting all forms and supplementary material well before your initial appointment will ultimately make your time with Dr. Myers more productive.

    To make an appointment with Dr. Myers, you can call his clinic directly at:
    434-964-0212 (For appointments, press option #2 or #4).

    or sign up through the online form 

    AIDP Staff
    Sherrie Pleasants, Medical Clerk, Option #2
    Maxine Hey, Medical Assistant, Option #4

    AIDP Location & Mailing Address
    AIDP’s physical address is 690 Bent Oaks Drive, Earlysville, VA 22936-0195

    Our mailing address is P.O. Box 195, Earlysville, VA 22936-0195

    Office Hours
    AIDP is open on Tuesday through Friday from 8 am to 6 pm EST.

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  • caseyh
    caseyh Member Posts: 63
    #8
    hopeful and optimistic said:

    Dr. "Snuffy" Myers , address and appointment number

    http://www.prostateteam.com/appointments.php

    Address and appointment number, Dr. Myers

    Appointments

    Whether you’ve just had your first high PSA reading or have been living with prostate cancer for decades, an appointment with AIDP is the first step toward a more proactive, positive approach to disarming your disease. Expect to spend several hours with Myers and the AIDP staff during your first meeting. Submitting all forms and supplementary material well before your initial appointment will ultimately make your time with Dr. Myers more productive.

    To make an appointment with Dr. Myers, you can call his clinic directly at:
    434-964-0212 (For appointments, press option #2 or #4).

    or sign up through the online form 

    AIDP Staff
    Sherrie Pleasants, Medical Clerk, Option #2
    Maxine Hey, Medical Assistant, Option #4

    AIDP Location & Mailing Address
    AIDP’s physical address is 690 Bent Oaks Drive, Earlysville, VA 22936-0195

    Our mailing address is P.O. Box 195, Earlysville, VA 22936-0195

    Office Hours
    AIDP is open on Tuesday through Friday from 8 am to 6 pm EST.

    		image
    image
    A Great Choice

    Especially for anyone with advanced disease.  The man is brilliant.  VG once described him as his "hero".  He is mine as well.  Know that he does not accept Medicare and that you will have to file for private insurance on your own.  In my opinion, he is the absolute best!!

  • MLKisner
    MLKisner Member Posts: 14
    #9
    Update on Husband

    We went to Cleveland in January, Good News his PSA was down from 41-11 in just one month. The scans showed no growth THANK GOD. we are praying for a miracle. We sought a second opinion at Johns Hopkins University, they said that CC was right on with their treatment and following.  He is experiencing sever Hot Flashes, and Fatigue on the Lupron and the Zytiga.  He is on an emotional roller coaster but we keep praying for him and for all of you to be blessed witha  healing.

    We go back to Cleveland in April, they are monitoring his PSA here locaally next test tomorrow.....

    Keep Praying
    Lots of Hugs

    Marsha

  • JEHJR
    JEHJR Member Posts: 24
    #10
    MLKisner said:

    Update on Husband

    We went to Cleveland in January, Good News his PSA was down from 41-11 in just one month. The scans showed no growth THANK GOD. we are praying for a miracle. We sought a second opinion at Johns Hopkins University, they said that CC was right on with their treatment and following.  He is experiencing sever Hot Flashes, and Fatigue on the Lupron and the Zytiga.  He is on an emotional roller coaster but we keep praying for him and for all of you to be blessed witha  healing.

    We go back to Cleveland in April, they are monitoring his PSA here locaally next test tomorrow.....

    Keep Praying
    Lots of Hugs

    Marsha

    Prayers are on there way

    Words may seem empty but I will pray for you and your family.

  • ralph.townsend1
    ralph.townsend1 Member Posts: 359 Member
    #11
    JEHJR said:

    Prayers are on there way

    Words may seem empty but I will pray for you and your family.

    Just got back!

    Just got back from MD Anderson, its looks like I will stay on Zytiga for up to 9 more months. Even with the PSA rising its very slow and the tumors are the same. I have been on Zytiga for 13 months with lupron for almost 3 years and praying since August 2008 for God's help.

     

    God bless all of us.

     

  • VascodaGama
    VascodaGama Member Posts: 3,641 Member
    #12
    ralph.townsend1 said:

    Just got back!

    Just got back from MD Anderson, its looks like I will stay on Zytiga for up to 9 more months. Even with the PSA rising its very slow and the tumors are the same. I have been on Zytiga for 13 months with lupron for almost 3 years and praying since August 2008 for God's help.

     

    God bless all of us.

     

    Ralph

    I am glad for the news too.

    Best wishes for a continuing control on the bandit.

    VG

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