Paraganglioma

a.j.
a.j. Member Posts: 2
edited March 2014 in Rare and Other Cancers #1
I wanted to know if anyone here has paraganglioma cancer. I do. It is around and in the liver. I would love to talk.

Comments

  • AustinMyAngel
    AustinMyAngel Member Posts: 2
    #2
    A.J., my husband has Stage
    A.J., my husband has Stage IV Malignant Paraganglioma of the abdomen. His primary tumor is in the abdomen on the right side, but he has tumors from the top of the skull down to just above his knees. He was diagnosed 4 years ago this coming December. We've been through many treatments, doctors...it's been one heck of a journey.

    Anything you need, just let us know. I hope you're doing well!

    Kris
  • lifer7
    lifer7 Member Posts: 1
    #3
    paraganglioma
    hey i was diagnosed in oct 2008 and ive got it in my belly in my butt on my lung swelling in my back something in my left breast plus cyst on my ovaries it hasnt grown since oct2008 and i declare its because of prayer...i decided against chemo...my family pretty much stepped away from me and my church people stepped in with everything...what do you know of this??? not much research that i knoow of only 3 places in the states...im in stage 4...email me back ...my onc doc is great and compassionate but im losing primary care doc -retiring...both are good ...now i must break in a new pc doc...my other one puleed me thru the disability stuff ...hope the new one will be of help...
  • bcaudill02
    bcaudill02 Member Posts: 1
    #4
    lifer7 said:

    paraganglioma
    hey i was diagnosed in oct 2008 and ive got it in my belly in my butt on my lung swelling in my back something in my left breast plus cyst on my ovaries it hasnt grown since oct2008 and i declare its because of prayer...i decided against chemo...my family pretty much stepped away from me and my church people stepped in with everything...what do you know of this??? not much research that i knoow of only 3 places in the states...im in stage 4...email me back ...my onc doc is great and compassionate but im losing primary care doc -retiring...both are good ...now i must break in a new pc doc...my other one puleed me thru the disability stuff ...hope the new one will be of help...

    I'm new to this website. Have recently been diagnosed with stage 4 paraganglioma after four years of remission from it earlier. Have mets to spine, hip/pelvis, and rib Any news on any type of new treatments that you hear of I am trying to determine next course of treatment. Tried MIBG but not a canidate.
  • mrmcd4206
    mrmcd4206 Member Posts: 4
    #5
    AustinMyAngel said:

    A.J., my husband has Stage
    A.J., my husband has Stage IV Malignant Paraganglioma of the abdomen. His primary tumor is in the abdomen on the right side, but he has tumors from the top of the skull down to just above his knees. He was diagnosed 4 years ago this coming December. We've been through many treatments, doctors...it's been one heck of a journey.

    Anything you need, just let us know. I hope you're doing well!

    Kris

    Stage IV Paraganglioma
    I have them all over me also. I have found hope that your husband has survived for so long. I would appreciate any info you have. I begin chemo next week as my first treatment. They told me as long as they can hold the tumors at bay with chemo, I live. Thanks you.
  • jlparody
    jlparody Member Posts: 1
    #6
    AustinMyAngel said:

    A.J., my husband has Stage
    A.J., my husband has Stage IV Malignant Paraganglioma of the abdomen. His primary tumor is in the abdomen on the right side, but he has tumors from the top of the skull down to just above his knees. He was diagnosed 4 years ago this coming December. We've been through many treatments, doctors...it's been one heck of a journey.

    Anything you need, just let us know. I hope you're doing well!

    Kris

    There is someone I know who
    There is someone I know who has been dx with this devastating disease. Please let me know any info you may have. I would appreciate it. Hope your husband is doing well.

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