germ cell cancer

dragonfly59
dragonfly59 Member Posts: 1
edited March 2014 in Rare and Other Cancers #1
my nephew has just been diagnoised with germ cell cancer but it is not in his testicals he is one of the 5% that has it somewhere else does anyone have any information about this type of cancer. The doctors say that it is the fast growing like lance armstrong had but it is the 5 percent that get it somewhere else. My nephew is 29 years old and just found out that he has it and is on a vent and in stage 4 please help me . I need information about this type of cancer and treatment options.

Comments

  • KarenMR
    KarenMR Member Posts: 3
    #2
    My son had a germ cell tumor
    Where is his tumor? My son's was in his brain on his pituitary gland. Germ cell tumors are very responsive to radiation. My son's has not returned after one and a half years.
    His was fast growing too. We are in Columbus, Ohio area and there is a doctor at Nationwide Children's hospital that specializes in germ cell (germinoma's) in the brain.

    Hope I can help,
    Karen
  • Peter_C
    Peter_C Member Posts: 2
    #3
    Germ Cell Cancer Is Very Treatable
    Hi. I had Germ Cell Cancer in 2005 and the tumors were located in my left abdomen area. I had 4 cycles of BEP (bleomicin, etopocyde & cisplatinum) Chemo followed by surgery. I'm not a doctor, but my understanding is that it is good to have fast growing Cancer as it is the most responsive to chemo. I went to Dana Farber in Boston. It sounds like your nephew is more advanced than I was, but my impression is that this type of Cancer has some good outcomes. Good luck!
  • karenwal
    karenwal Member Posts: 2
    #4
    Germ Cell Cancer
    My husband was diagnosed with germ cell cancer in 2007 (29 years of age) - the tumor was the size of his fist and was located in his mediastinum, obstructing his aorta. He underwent 4 rounds of chemotherapy followed by surgery to remove the remainder of the tumor. It has now been 2 years and the oncologist said it is highly unlikely that the germ cell cancer will return. My husband ate a lot of alkaline food (lots of dark green leafy vegetables etc.) and drank vegetable juice (beetroot, carrot, celery, and apple) everyday. This helped to boost his immune system, which was really important during his treatment. Studies have also shown that some chemotherapy drugs become more effective in the area around a tumor cell if the body is more alkaline. So I highly recommend putting your nephew on an alkaline diet. I truly hope that helps. God bless.
  • Reachingout
    Reachingout Member Posts: 1
    #5
    Germ Cell Cancer
    In 2000, at the age of 20, my son was diagnosed with Mediastinal Seminoma. The tumor was larger than his heart and adhered to his aorta, at stage 4. He was to go through four months of the BEP treatments. The first month the tumor reduced to half of it's original size. The second and third months of treatment resulted in no change. The oncologist said there was no sense beating his body up any further with the chemo. They kept a close eye on the tumor, and within 9 months, it had reduced in sized to barely a speck with no further treatment. They said the speck could even just be scar tissue. Praise God!! At 2 1/2 years after the last chemo treatment, the tumor markers rose and they ordered a PET scan. The tumor had returned and was the size of a walnut. This time they performed thorasic surgery and removed the tumor, which was in the thymus gland. The thymus gland and a small portion of the right lung was removed for a margin. They did not radiate. Last December was the five year milestone since the recurrance. With that, his checkups are now only yearly. He goes back next month and I must admit that it has been a very long 9 years for him. His anxiety level goes out the roof for about 2 weeks before the appointments. There are several nodules in his left lung near the aorta that have not changed in size for several years that they do not suspect to be cancer. Almost everyone has lung nodules, but with his history they must monitor them. You can imagine our concern.

    I wish your nephew good results. He is the same age as my son.
  • godsson
    godsson Member Posts: 1
    #6
    Reachingout said:

    Germ Cell Cancer
    In 2000, at the age of 20, my son was diagnosed with Mediastinal Seminoma. The tumor was larger than his heart and adhered to his aorta, at stage 4. He was to go through four months of the BEP treatments. The first month the tumor reduced to half of it's original size. The second and third months of treatment resulted in no change. The oncologist said there was no sense beating his body up any further with the chemo. They kept a close eye on the tumor, and within 9 months, it had reduced in sized to barely a speck with no further treatment. They said the speck could even just be scar tissue. Praise God!! At 2 1/2 years after the last chemo treatment, the tumor markers rose and they ordered a PET scan. The tumor had returned and was the size of a walnut. This time they performed thorasic surgery and removed the tumor, which was in the thymus gland. The thymus gland and a small portion of the right lung was removed for a margin. They did not radiate. Last December was the five year milestone since the recurrance. With that, his checkups are now only yearly. He goes back next month and I must admit that it has been a very long 9 years for him. His anxiety level goes out the roof for about 2 weeks before the appointments. There are several nodules in his left lung near the aorta that have not changed in size for several years that they do not suspect to be cancer. Almost everyone has lung nodules, but with his history they must monitor them. You can imagine our concern.

    I wish your nephew good results. He is the same age as my son.

    Germ Cell Tumor
    I was diagnosed with an Germ Cell Tumor of the pineal region in 2002 basically the same age as your nephew. The tumor was resected with following courses of radiation to the brain stem. Subsequently I have had drop metastices to the spine pretty much each year since, with my longest remission lasting for 18 months. I have had alternating chemo/radiation with a tandem stem cell cell transplant in 2007. These tumors are very responsive to treatment and by the grace of God we will continue to fight. The locations of my tumors and the brain/blood barier have reduced the longevity of my remissions but be incouraged and may the Lord be with you.
  • SurvivorCaretaker
    SurvivorCaretaker Member Posts: 1
    #7
    Germ Cell Cancer
    Hi there...just read your post from July, it is now October so I know the situation has changed greatly for you but if you still need any info or support, I nursed my husband through the same situation. His germ cell cancer bypassed the testicles and grew solely on his chest (mediastinum)...he was at the end of his life when we found out (he was 35 years old) cuz the tumor was closing his esophogus and he couldn't breathe or swallow...he survived an amazing amount of chemo. It was a conconction of three different chemo drugs and I believe the same protocol as Lance Armstrong (we used Lance's survival as a beacon of light and hope)...he was saved at UMDNJ in New Jersey by a wonderful doctor, Marguerite Bryan, M.D. Contact me if you need and all the best to you and your nephew.
  • Joanne Satriani
    Joanne Satriani Member Posts: 2
    edited February 2017 #8
    SurvivorCaretaker said:

    Germ Cell Cancer
    Hi there...just read your post from July, it is now October so I know the situation has changed greatly for you but if you still need any info or support, I nursed my husband through the same situation. His germ cell cancer bypassed the testicles and grew solely on his chest (mediastinum)...he was at the end of his life when we found out (he was 35 years old) cuz the tumor was closing his esophogus and he couldn't breathe or swallow...he survived an amazing amount of chemo. It was a conconction of three different chemo drugs and I believe the same protocol as Lance Armstrong (we used Lance's survival as a beacon of light and hope)...he was saved at UMDNJ in New Jersey by a wonderful doctor, Marguerite Bryan, M.D. Contact me if you need and all the best to you and your nephew.

    Hello, My name is Joanne and

    Hello, My name is Joanne and my brother had originally been diagnosed with germ cell cancer when in his twenties.  He is now 55 and the germ cell cancer has come back with a vengence.  He has underwent testicular surgery, again.  After 4 chemo treatments and multiple blood transfusions, from October to December, his markers have come down considerably (15.5)  (from 480), but his PET scan still shows 2 small masses in the retroperitoneal area and near the aorta.  His doctor has now referred him to another doctor as he feels he has done what he could.  I found the comment from another cancer survivor interesting about making the body more alkaline to facilitate the destruction of the germ cells. He lives in Florida and will be consulting with a specialist at the University of Miami.  If you have any avenues or thoughts, I welcome them. Thank you.

     

     

     

     

  • Joanne Satriani
    Joanne Satriani Member Posts: 2
    #9
    germ cell

    Hello, My name is Joanne and my brother had originally been diagnosed with germ cell cancer when in his twenties.  He is now 55 and the germ cell cancer has come back with a vengence.  He has underwent testicular surgery, again.  After 4 chemo treatments and multiple blood transfusions, from October to December, his markers have come down considerably (15.5)  (from 480), but his PET scan still shows 2 small masses in the retroperitoneal area and near the aorta.  His doctor has now referred him to another doctor as he feels he has done what he could.  I found the comment from another cancer survivor interesting about making the body more alkaline to facilitate the destruction of the germ cells. He lives in Florida and will be consulting with a specialist at the University of Miami.  If you have any avenues or thoughts, I welcome them. Thank you.

  • wzsun
    wzsun Member Posts: 2
    #10
    karenwal said:

    Germ Cell Cancer
    My husband was diagnosed with germ cell cancer in 2007 (29 years of age) - the tumor was the size of his fist and was located in his mediastinum, obstructing his aorta. He underwent 4 rounds of chemotherapy followed by surgery to remove the remainder of the tumor. It has now been 2 years and the oncologist said it is highly unlikely that the germ cell cancer will return. My husband ate a lot of alkaline food (lots of dark green leafy vegetables etc.) and drank vegetable juice (beetroot, carrot, celery, and apple) everyday. This helped to boost his immune system, which was really important during his treatment. Studies have also shown that some chemotherapy drugs become more effective in the area around a tumor cell if the body is more alkaline. So I highly recommend putting your nephew on an alkaline diet. I truly hope that helps. God bless.

    Germ Cell Cancer

    Hi Karenwal,

    How is your husband doing now? My husband (28) was diagnosed with non-seminoma germ cell (yolk sac tumor) mediastinum in October 2017. He went through 3 rounds of chemotherapy, then received a surgery to remove the remainder of the tumor in January 2018. Any things you found helpful during this period when you and your husban were fighting against this cancer? I'll look into the alkaline diet. Thank you.

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