Metastatic Paraganglioma

syd1053
syd1053 Member Posts: 3
edited March 2014 in Rare and Other Cancers #1
My daughter has Metastatic paraganglioma of both lungs, I have just been told that I have a Paraganglioma tumor in my neck. Can you tell me if there is any research being done anywhere.
All because of a bad gene SDHD

Comments

  • Stas
    Stas Member Posts: 5
    #2
    Paraganglioma
    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"
  • MascaraNinja
    MascaraNinja Member Posts: 1
    #3
    Paraganlioma in lungs
    I am 25 years old and have been a survivor of this disease since i was 13 years old. I too have paraganliomas in my lungs. For me it started in my neck. I had Paraganlioma tumors on both sides of my neck. Those were both removed and later on down the road had to do radiation on them because of regrowth. After removing the first tumor and finding out that it was malignant I had PET scans done and thats when they found the tumors in my lungs. I believe there is about 35 all together. I have undergone several treatments for these tumors including a clinical study called octriotide, interferon shots, and chemotherapy. None of these treatments got rid of the tumors. They are still there, although they have not grown in over 7 years now. To me that is success because as long as I feel healthy and they aren't causing pain or other problems and are not growing then I get to live my life like a normal person. I get cat scans done twice a year to monitor them. If we start seeing growth again then we will discuss further treatments. One in which is in Switzerland. There are treatments out there for this disease. Radiation reacts really well to these tumors. At least for me it did. You cant give radiation to your lungs though which is why I did the chemotherapy. No it didnt get rid of the tumors in my lungs but at least it stopped them from growing.
    To answer your question on if research is being done, absolutely. They are finding new treatments for this disease everyday. You just have to be open minded and take a chance with it. I dont know how old your daughter is but I was 13 when I started these treatments and I dont have and damage from any of them. The only damage I have was from the 2 surgeries I had on my neck. One of the tumors was invading the vegus nerve so they had to cut it which left my right vocal cord and and the right side of my tongue paralyzed. Though i can still taste and I have a vocal cord implant now that allows me to speak louder than a whisper.But none of the treatments I did caused any further damage. I highly recommend trying octriotide for your daughters lungs as when I did that treatment it did work a little. But since it wasn't approved by the FDA and I was under the age of 18 they wouldnt give me the full dosage. Because of that the treatment didn't work as well as it could have and the FDA refused to allow me to go on with treatments. Interferon shots kept the tumors stable for about 3 years and thats when they started growing again. Chemo is what has kept them stable the longest so far. since the chemo though I have not done any other treatments.
    on the bright side, these tumors for the most part are known to be very slow growing. Everything will be ok!
  • TereB
    TereB Member Posts: 286 Member
    #4
    MascaraNinja said:

    Paraganlioma in lungs
    I am 25 years old and have been a survivor of this disease since i was 13 years old. I too have paraganliomas in my lungs. For me it started in my neck. I had Paraganlioma tumors on both sides of my neck. Those were both removed and later on down the road had to do radiation on them because of regrowth. After removing the first tumor and finding out that it was malignant I had PET scans done and thats when they found the tumors in my lungs. I believe there is about 35 all together. I have undergone several treatments for these tumors including a clinical study called octriotide, interferon shots, and chemotherapy. None of these treatments got rid of the tumors. They are still there, although they have not grown in over 7 years now. To me that is success because as long as I feel healthy and they aren't causing pain or other problems and are not growing then I get to live my life like a normal person. I get cat scans done twice a year to monitor them. If we start seeing growth again then we will discuss further treatments. One in which is in Switzerland. There are treatments out there for this disease. Radiation reacts really well to these tumors. At least for me it did. You cant give radiation to your lungs though which is why I did the chemotherapy. No it didnt get rid of the tumors in my lungs but at least it stopped them from growing.
    To answer your question on if research is being done, absolutely. They are finding new treatments for this disease everyday. You just have to be open minded and take a chance with it. I dont know how old your daughter is but I was 13 when I started these treatments and I dont have and damage from any of them. The only damage I have was from the 2 surgeries I had on my neck. One of the tumors was invading the vegus nerve so they had to cut it which left my right vocal cord and and the right side of my tongue paralyzed. Though i can still taste and I have a vocal cord implant now that allows me to speak louder than a whisper.But none of the treatments I did caused any further damage. I highly recommend trying octriotide for your daughters lungs as when I did that treatment it did work a little. But since it wasn't approved by the FDA and I was under the age of 18 they wouldnt give me the full dosage. Because of that the treatment didn't work as well as it could have and the FDA refused to allow me to go on with treatments. Interferon shots kept the tumors stable for about 3 years and thats when they started growing again. Chemo is what has kept them stable the longest so far. since the chemo though I have not done any other treatments.
    on the bright side, these tumors for the most part are known to be very slow growing. Everything will be ok!

    Paraganglioma
    I have malignant paraganglioma but when the first tumor was found it was called a glomus jugulare tumor and it was in my head, in the ear area. At the time that tumor was benign but after surgery it grew back very aggressive so I know have many metastases and it is now called a malignant paraganglioma. I have many small tumors in my lungs. They've been there for almost 20 years. Radiation has worked very well for all the other metastases/tumors but it has never been done for the ones in my lungs. Since my original/primary tumor is rare, there wasn't much info around in 1987 when I was diagnosed. What I do know is that they are slow growing and radiation works well when they are causing problems (pain). If no pain, I just have an MRI and CT Scan 2-3 times a year to keep an eye for new ones or check growth of old ones. As far as I know, there was only one drug in chemo for this and it didn't kill the tumors, just shrank them so I haven't had chemo unless it is absolutely necessary. I have many metastases not only in my lungs but also in the bones (spine), etc. I've had these for years and I still feel alright, not sick or unable to do anything.

    I think paraganglioma covers many things. Does everybody here had a primary tumor in the head/neck area?
  • ValerRose
    ValerRose Member Posts: 6
    #5
    MascaraNinja said:

    Paraganlioma in lungs
    I am 25 years old and have been a survivor of this disease since i was 13 years old. I too have paraganliomas in my lungs. For me it started in my neck. I had Paraganlioma tumors on both sides of my neck. Those were both removed and later on down the road had to do radiation on them because of regrowth. After removing the first tumor and finding out that it was malignant I had PET scans done and thats when they found the tumors in my lungs. I believe there is about 35 all together. I have undergone several treatments for these tumors including a clinical study called octriotide, interferon shots, and chemotherapy. None of these treatments got rid of the tumors. They are still there, although they have not grown in over 7 years now. To me that is success because as long as I feel healthy and they aren't causing pain or other problems and are not growing then I get to live my life like a normal person. I get cat scans done twice a year to monitor them. If we start seeing growth again then we will discuss further treatments. One in which is in Switzerland. There are treatments out there for this disease. Radiation reacts really well to these tumors. At least for me it did. You cant give radiation to your lungs though which is why I did the chemotherapy. No it didnt get rid of the tumors in my lungs but at least it stopped them from growing.
    To answer your question on if research is being done, absolutely. They are finding new treatments for this disease everyday. You just have to be open minded and take a chance with it. I dont know how old your daughter is but I was 13 when I started these treatments and I dont have and damage from any of them. The only damage I have was from the 2 surgeries I had on my neck. One of the tumors was invading the vegus nerve so they had to cut it which left my right vocal cord and and the right side of my tongue paralyzed. Though i can still taste and I have a vocal cord implant now that allows me to speak louder than a whisper.But none of the treatments I did caused any further damage. I highly recommend trying octriotide for your daughters lungs as when I did that treatment it did work a little. But since it wasn't approved by the FDA and I was under the age of 18 they wouldnt give me the full dosage. Because of that the treatment didn't work as well as it could have and the FDA refused to allow me to go on with treatments. Interferon shots kept the tumors stable for about 3 years and thats when they started growing again. Chemo is what has kept them stable the longest so far. since the chemo though I have not done any other treatments.
    on the bright side, these tumors for the most part are known to be very slow growing. Everything will be ok!

    Paraganglioma Support

    I wanted to let you all know that there's a really active Facebook support group for people with Paragangliomas and Pheochromocytomas.

    I had a Carotid Paraganglioma removed last February and the people in this support group were immeasurably helpful and it's so active you start feeling not nearly so rare!

    https://www.facebook.com/groups/pheoparasupportgroup/
  • JREgge
    JREgge Member Posts: 2
    #6
    TereB said:

    Paraganglioma
    I have malignant paraganglioma but when the first tumor was found it was called a glomus jugulare tumor and it was in my head, in the ear area. At the time that tumor was benign but after surgery it grew back very aggressive so I know have many metastases and it is now called a malignant paraganglioma. I have many small tumors in my lungs. They've been there for almost 20 years. Radiation has worked very well for all the other metastases/tumors but it has never been done for the ones in my lungs. Since my original/primary tumor is rare, there wasn't much info around in 1987 when I was diagnosed. What I do know is that they are slow growing and radiation works well when they are causing problems (pain). If no pain, I just have an MRI and CT Scan 2-3 times a year to keep an eye for new ones or check growth of old ones. As far as I know, there was only one drug in chemo for this and it didn't kill the tumors, just shrank them so I haven't had chemo unless it is absolutely necessary. I have many metastases not only in my lungs but also in the bones (spine), etc. I've had these for years and I still feel alright, not sick or unable to do anything.

    I think paraganglioma covers many things. Does everybody here had a primary tumor in the head/neck area?

    Hello Tere!

    HOw are you doing?  haven't been to this site much, I had to re-start my membership since I have no longer access to my other email address.

    Hugs

    Jessica R Egge

     

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