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EMPD Extramammary Vulvar Paget’s Disease

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Comments

  • canix
    canix CSN Member Posts: 9 Member
    #22
    https://csn.cancer.org/discussion/comment/1726938#Comment_1726938

    Hi there. The really best place to find support is through myEMPD.com. Steve Schroeder started it years ago and it is the best place. There is also a Facebook support group which has a wealth of know and support from around the world. Best, Cheryl

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  • hernandezrm1976
    hernandezrm1976 CSN Member Posts: 3 Member
    #23

    Thank You for this great info. I am so thankful for the great advice and support. I truly appreciate it.

    So, about the dialators. I have been 2 years post brachytherapy and radiation to cervix.

    I am have just begun pelvic.floor therapy and am looking forward to finally getting the dialator portion included into my therapy. Something I should have done a long time ago. But, not what haves, should haves, could haves. Today is THE NOW, THE IMPORTANT, THE CURRENT, AND THE COMMON. SO TACKLE TODAY, DONT LOOK AT YESTERDAY. TODAY HAS A LOT TO SPEAK OF... I AM IN DIALOGUE WITH IT.

    THANK YOU TO ALL WHO HAVE UNDERSTOOD, READ AND CARED.

    DITTO!

    ROSEMARY

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  • hernandezrm1976
    hernandezrm1976 CSN Member Posts: 3 Member
    #24

    Also, am going to check out the Facebook page of Steve Schroeder. I have been diagnosed with cervical cancer and am confused with all these Cancer websites with all different types of cancer. Aren't we ALL BATTLING THE SAME DEMON.

    ANYHOW, ID LIKE TO KNOW WHERE I BELONG. IS IT GYNECOLOGICAL, OVARIAN, CERVICAL, WHAT????

    ALSO, DOES ANYONE KNOW HOW I CAN GET A RIBBON 🎀, CANCER RIVVON OF MY COLOR, SUPPOSEDLY ITS THE GREEN/BLUE COLOR. CHEMO BRAIN JUST HIT!

    CURRENTLY, I AM GOING THROUGH CHEMO, WITH KEYTRUDA, JUST ADDED AS TO BAVE AS MY MAINTENANCE. IT WAS ADDED TO MY 5TH INFUSION.

    ANYONE HAVE ANY SUGGESTIONS...

    AT TIMES, I FEEL AS IF I SHOULD HAVE MORE INFO BEFORE THE DOCTORS TAKE CONTROL AND TELL ME WHAT TO DO. IS THERE NOT MANY MORE OPTIONS FOR CERVICAL CANCER PATIENTS, SUCH AS IMMUNOTHERAPY?

    AND, SHOULD I BE WAITING TIL THERE IS NO OTHER OPTIONS TO BEGIN IMMUNOTHERAPY AND / OR MAINTENENCE THERAPY?

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