Paraganglinoma (Abdomen)

valerie75
valerie75 Member Posts: 1
edited March 2014 in Rare and Other Cancers #1
My friend (age 47) has been diagnosed with Maglinant Paraganglinoma. The doctors don't want to do anything but continue to remove the tumors. She would just like contact with someone esle with this form of cancer. We are trying to get her into the Anderson Center in Texas. She had her first tumor over 20 years ago.
«1

Comments

  • TereB
    TereB Member Posts: 286 Member
    #2
    I have also been diagnosed with malignant paraganglioma. Most of my tumors are in the spine and pelvis and the only treatment I have is radiation when one of the tumors causes pain. My first tumor was found in 1987 and it was a glomus tumor which later became malignant and became malignant paraganglioma. Where does her cancer originate? I've been to M.D. Anderson and there is some chemo, very old, that shrinks tumors but don't know if it is for all paragangliomas or for metastases of glomus tumors. I am not sure how the email messages work here but I have an email address in case you want to contact me. I guess you do too since I just sent you an email. All the best to your friend, TereB
  • sd531
    sd531 Member Posts: 2
    #3
    Valerie, what type of paraganglinoma does she have? I have metastatic pheochromocytoma/paraganglinoma. For me all they are able to do is find the tumors and remove them if possible. I did go to MD Anderson but did not have much luck there. Please e-mail me if you would like more info.
  • marciewhipple
    marciewhipple Member Posts: 3 Member
    #4
    sd531 said:

    Valerie, what type of paraganglinoma does she have? I have metastatic pheochromocytoma/paraganglinoma. For me all they are able to do is find the tumors and remove them if possible. I did go to MD Anderson but did not have much luck there. Please e-mail me if you would like more info.

    Hi,

    I have a malignant glomus that I struggle with, but have a niece that was recently dx'd w/ a malignant pheo. She is currently under treatment at the NIH in Bethesda, MD. Please share your stories w/ us.
    Thanks so much!

    Marcie Whipple
  • kate100
    kate100 Member Posts: 7
    #5
    TereB said:

    I have also been diagnosed with malignant paraganglioma. Most of my tumors are in the spine and pelvis and the only treatment I have is radiation when one of the tumors causes pain. My first tumor was found in 1987 and it was a glomus tumor which later became malignant and became malignant paraganglioma. Where does her cancer originate? I've been to M.D. Anderson and there is some chemo, very old, that shrinks tumors but don't know if it is for all paragangliomas or for metastases of glomus tumors. I am not sure how the email messages work here but I have an email address in case you want to contact me. I guess you do too since I just sent you an email. All the best to your friend, TereB

    I too, have been diagnosed with malignant abdominal paraganglioma. I am 33 yrs old and have a son who will soon turn two. I was recently treated at UCSF by Dr. Fitzgerald. Has anyone else undergone 131 MIGB radiation? Also, has anyone had chemotherapy? My tumors are too extensive for surgery.
    Thanks for any assistance.
    Kate
  • mrmcd4206
    mrmcd4206 Member Posts: 4
    #6
    kate100 said:

    I too, have been diagnosed with malignant abdominal paraganglioma. I am 33 yrs old and have a son who will soon turn two. I was recently treated at UCSF by Dr. Fitzgerald. Has anyone else undergone 131 MIGB radiation? Also, has anyone had chemotherapy? My tumors are too extensive for surgery.
    Thanks for any assistance.
    Kate

    Paraganglioma
    I am 43 and have metastic paraganglioma. Tumors all over me. I start CyVADIC chemo next week. Am being treated at M.D. Anderson. Any info would be appreciated.
  • Unknown
    Unknown
    #7
    This comment has been removed by the Moderator
  • Sharoncannon
    Sharoncannon Member Posts: 1
    #8
    kate100 said:

    I too, have been diagnosed with malignant abdominal paraganglioma. I am 33 yrs old and have a son who will soon turn two. I was recently treated at UCSF by Dr. Fitzgerald. Has anyone else undergone 131 MIGB radiation? Also, has anyone had chemotherapy? My tumors are too extensive for surgery.
    Thanks for any assistance.
    Kate

    Malignant Glomus Tumor
    Hi Kate,

    Thinking I had a pimple on my head this summer which was becoming more and more painful, I had it removed and pathology showed it to be a malignant glomus tumor. Complete excision and a trip to the oncologist and a CT scan of my body later showed I have matastisis in my lungs. I had a needle biopsy done which was inconclusive and last Tuesday the 13th of Oct. 09 I had a VATS procedure done (video assisted thorasic surgery) to remove several nodules in my lungs. Diagnosis Malignant Glomus tumors. I have a large fibroid on the top of my uterus which is being MRI -d tomorrow to see if it might be a source. UGHhhhhh. From what I have learned so far Malignant Glomus tumors are a soft tissue sarcoma and the best treatment is removal and possibly radiationa and Chemo. I see another oncologist this week with a Pet scan scheduled. I have too much faith to let this beat me but I am looking for other people who are dealing with this. I am just beginning this journey of this rare, rare, rare tumor. We are teaching these doctors as I have found 23 documented cases in the world. Your post is quite old, how are you doing???

    Sharon
  • John Lochner
    John Lochner Member Posts: 2
    #9
    kate100 said:

    I too, have been diagnosed with malignant abdominal paraganglioma. I am 33 yrs old and have a son who will soon turn two. I was recently treated at UCSF by Dr. Fitzgerald. Has anyone else undergone 131 MIGB radiation? Also, has anyone had chemotherapy? My tumors are too extensive for surgery.
    Thanks for any assistance.
    Kate

    Hi Kate I have paraganglioma
    Hi Kate I have paraganglioma in the abbdomin with metz to both lungs,liver and abdominal cavity. It likes main arteries. two years ago I went on Rapamune 2mg perday since then I have had no new tumors.
  • John Lochner
    John Lochner Member Posts: 2
    #10
    Paraganglioma
    I have abbdominal paraganglioma with metz to both lungs my liver and in various places in my back. I used to have a tumor removed from my liver every six months. method for removal was radio frequency ablation. over two years ago I started taking Rapamune 2mg per day since that time I have had no new tumors and the one tumor I have now was present before starting Rapamune. until now the existing tumor has shown very little growth, the last scan showed an uptic in the groth rate so I will be going in for a course of stereo tachtic radio sugery to kill the tumor. Im into my eighth year of living with paraganglioma.
  • fcraig
    fcraig Member Posts: 9
    #11
    John Lochner said:

    Paraganglioma
    I have abbdominal paraganglioma with metz to both lungs my liver and in various places in my back. I used to have a tumor removed from my liver every six months. method for removal was radio frequency ablation. over two years ago I started taking Rapamune 2mg per day since that time I have had no new tumors and the one tumor I have now was present before starting Rapamune. until now the existing tumor has shown very little growth, the last scan showed an uptic in the groth rate so I will be going in for a course of stereo tachtic radio sugery to kill the tumor. Im into my eighth year of living with paraganglioma.

    Paraganglioma
    John hello my name is Francis and I am very interested in your Rapamune results.Is this a trial type drug or is it something my Oncologist can prescribe me?..Also how are you dealing with the side effects in your day to day life?..I have Paraganglioma and have been told that chemo is my only alternative to slow the spreading of tumors.Any info would be greatly appreciated.Thanks in advance.
  • fcraig
    fcraig Member Posts: 9
    #12
    kate100 said:

    I too, have been diagnosed with malignant abdominal paraganglioma. I am 33 yrs old and have a son who will soon turn two. I was recently treated at UCSF by Dr. Fitzgerald. Has anyone else undergone 131 MIGB radiation? Also, has anyone had chemotherapy? My tumors are too extensive for surgery.
    Thanks for any assistance.
    Kate

    UCSF
    Kate hello my name is Francis and I too have Paraganglioma in my abdomen.I just qualified for the MIBG treatment.I have yet to meet Dr. Fitzgerald but as far as Doctors go you are seeing one of the BEST for our cancer.My heart goes out to you and yours.I am also being told chemo might slow the progression but I am also told it might only have a 30% success rate.I will post more info as my Oncologist gives it to me.Hope this helps.
  • syd1053
    syd1053 Member Posts: 3
    #13
    John Lochner said:

    Paraganglioma
    I have abbdominal paraganglioma with metz to both lungs my liver and in various places in my back. I used to have a tumor removed from my liver every six months. method for removal was radio frequency ablation. over two years ago I started taking Rapamune 2mg per day since that time I have had no new tumors and the one tumor I have now was present before starting Rapamune. until now the existing tumor has shown very little growth, the last scan showed an uptic in the groth rate so I will be going in for a course of stereo tachtic radio sugery to kill the tumor. Im into my eighth year of living with paraganglioma.

    Paraganglioma ( Metz both lungs )
    Hi John my daughter was diagnosed with a Glomus Jugularize tumor in 2002,in November in 2009 she was told it had moved to both lungs, her oncoligist told us that there was no current treatment for her condition at his time. I have jut been told that i have a tumor in my neck and it is the same as my daughter ,and all because I have a rogue gene called SDHD which I have pasted on to her and possibly my son.
  • aykt36
    aykt36 Member Posts: 28
    #14
    thanks
    thanks



  • Stas
    Stas Member Posts: 5
    #15
    Paraganglioma
    My father has been diagnosed with metastatic paraganglioma (districts of abdomen, retroperitoneal area, lynths, liver, skeletal bone). We are a family from Ukraine. Recently he has been treated in Switzerland with 2 cycles of radionuclide therapy with 90 DOTATATE. We will be very happy to have a communication and cooperation with you.



    Hope, everything will be ok.

    Stanislav
  • Stas
    Stas Member Posts: 5
    #16
    Stas said:

    Paraganglioma
    My father has been diagnosed with metastatic paraganglioma (districts of abdomen, retroperitoneal area, lynths, liver, skeletal bone). We are a family from Ukraine. Recently he has been treated in Switzerland with 2 cycles of radionuclide therapy with 90 DOTATATE. We will be very happy to have a communication and cooperation with you.



    Hope, everything will be ok.

    Stanislav

    Paraganglioma
    My father has been diagnosed with metastatic paraganglioma (districts of abdomen, retroperitoneal area, lynths, liver, skeletal bone). We are a family from Ukraine. Recently he has been treated in Switzerland with 2 cycles of radionuclide therapy with 90 DOTATATE. We will be very happy to have a communication and cooperation with you.



    Hope, everything will be ok.

    Stanislav

    WRITE US

    dobra2007@rambler.ru

    or find us in ICQ under the nick "Stas Batryn"
  • Stas
    Stas Member Posts: 5
    #17
    TereB said:

    I have also been diagnosed with malignant paraganglioma. Most of my tumors are in the spine and pelvis and the only treatment I have is radiation when one of the tumors causes pain. My first tumor was found in 1987 and it was a glomus tumor which later became malignant and became malignant paraganglioma. Where does her cancer originate? I've been to M.D. Anderson and there is some chemo, very old, that shrinks tumors but don't know if it is for all paragangliomas or for metastases of glomus tumors. I am not sure how the email messages work here but I have an email address in case you want to contact me. I guess you do too since I just sent you an email. All the best to your friend, TereB

    Paraganglioma
    My father has been diagnosed with metastatic paraganglioma (districts of abdomen, retroperitoneal area, lynths, liver, skeletal bone). We are a family from Ukraine. Recently he has been treated in Switzerland with 2 cycles of radionuclide therapy with 90 DOTATATE. We will be very happy to have a communication and cooperation with you.



    Hope, everything will be ok.

    Stanislav
  • Mrs K
    Mrs K Member Posts: 1
    #18
    John Lochner said:

    Hi Kate I have paraganglioma
    Hi Kate I have paraganglioma in the abbdomin with metz to both lungs,liver and abdominal cavity. It likes main arteries. two years ago I went on Rapamune 2mg perday since then I have had no new tumors.

    Paraganglioma
    Hi John,

    I was just diagnosed with paraganglioma in the abdomen, lungs and brain. I had surgery 2 weeks ago to remove the brain tumor. I was looking for anyone that is currently using this website while treating for this cancer. It seems like all of the posts are older, but it is very encouraging to me to read some of them.
  • couchpotato
    couchpotato Member Posts: 2
    #19
    paraganglioma
    I cannot find anyone that has stage 4 paraganglioma or find out more about it. It has affected my husbands bones and some organs. Does anyone have any feedback of what we're in store for and how it will affect my husband. He was diagnose in August 2008 with little chance of surviving. We feel blessed because he is still here.
  • fcraig
    fcraig Member Posts: 9
    #20
    couchpotato said:

    paraganglioma
    I cannot find anyone that has stage 4 paraganglioma or find out more about it. It has affected my husbands bones and some organs. Does anyone have any feedback of what we're in store for and how it will affect my husband. He was diagnose in August 2008 with little chance of surviving. We feel blessed because he is still here.

    Paraganglioma
    Hello I was diagnosed with stage four paraganglioma last year,I currently take 3-stage chemotherapy that has stopped the spread of my tumors and even shrank some.I too have been given a short life span but have heard from people that have been living 10yrs with this cancer.I have had a couple surgeries to remove large tumors but overall have found that fighting this cancer is very possible.If you have any questions just message me back.
  • agueldner
    agueldner Member Posts: 2
    #21
    fcraig said:

    Paraganglioma
    Hello I was diagnosed with stage four paraganglioma last year,I currently take 3-stage chemotherapy that has stopped the spread of my tumors and even shrank some.I too have been given a short life span but have heard from people that have been living 10yrs with this cancer.I have had a couple surgeries to remove large tumors but overall have found that fighting this cancer is very possible.If you have any questions just message me back.

    paraganglioma
    My husband had a tumor near his liver and kidney.. they removed it back in june.. they said it was not cancer but my husband satrted feeling so much better. No more night sweats, throwing up, or abdominal pain. 5 weeks post surgery he started getting all the symptoms again. He went back into see the surgeon and they ordered another CT.. within 6 weeks post surgery, he developed another tumor in the same region, this time against the vena cava. This tumor was quadruple the size of the last one. He was referred to San Antonio to a speciaty surgeon and when reviewed past scans, surgery and biopsies on last tumor and scan of current tumor he decided my husband needed to be referred to an oncologist. We met with the oncologist that diagonsed him with paraganglioma and it being cancer.. they have never done any scans of his head nor chest so this next week he is having a full body CT and meeting with a genetic counselor to be tested. He also has to have a MIBG scan.. the doctor told him there was no chemo nor radiation to cure this type of cancer only surgery and it was major. From reading previous post I am more confused then ever.. and scared!! Can someone please give me a little more info on what to expect? We have children as well.. thank you!!

Discussion Boards