Germ Cell Tumor

nene05
nene05 Member Posts: 10
edited March 2014 in Rare and Other Cancers #1
I HAVE GERM CELL TUMORS IN MY ABDOMEN. I AM ON MY SECOND ROUND OF CHEMO. THE TUMORS ARE NOT RESPONDING. HAS ANYONE HEARD OF THIS TYPE OF CANCER? I KNOW ITS VERY RARE. I HAVE SEARCHED MANY SITES AND HAVE FOUND NOTHING.

Comments

  • [Deleted User]
    [Deleted User] Posts: 0
    #2
    American Cancer Society
    Hello,

    We encourage you to contact the American Cancer Society's National Cancer Information Center. Cancer Information Specialists are available 24 hours a day and can assist you with information on your diagnosis and treatment. They can be reached at 1-800-227-2345. We wish you the best on your treatment.

    Kind regards,
    Your CSN Staff
  • jsbroome
    jsbroome Member Posts: 2
    #3
    Germ Cell Tumor
    Per the above post, sounds like what is called an extragonadal germ cell tumor. Not sure if you are male or female, they can occur in either. These usually occur as testicular cancer in males and ovarian cancers (there are other non-germ cell types of ovarian cancer also) in women. However, occasionally they can occur in other, "extragonadal" locations. Most common extragonadal sites are retroperitoneum (abdomen) and mediastinum (chest). From there, diagnosis generally falls into either seminomatous or non-seminomatous germ cell tumors. Each carry a little different response and have different biological behaviors. Treatment depends on many factors like extent of disease at presentation, size, exact cell type, but chemo is generally used with all. Chemo could be administered either before or after surgery. With some of the less advanced seminomatous tumors, surgical resection is not recommended, only chemo. If your tumor is not responding after two cycles, it's probably non-seminomatous. Is surgical resection planned? The objective should be to perhaps reduce the size a bit, surgically resect and then follow. Even though the primary tumor is not responding as you would hope, chemo is still important because it treats the whole body, so if there are small groups of cells elsewhere that are undetectable, chemo should wipe them out. Do you know what chemo is being used...generally, should be some combination of cisplatin, etoposide, bleomycin, vincristine, ifosfamide. Usually for 4 cycles. It's a hard regimen so hang in there.

    www.cancer.gov, go to all cancer types off of home page, then scroll down to letter E and select link for Extragonadal Germ Cell Tumor

    I had a mediastinal primary germ cell tumor, diagnosed October 2007 and had an excellent response to therapy. So almost a year out with no evidence of disease. I am also a medical professional in the cancer field, thus my detailed answer above.

    God Bless and Best regards.
  • nene05
    nene05 Member Posts: 10
    #4
    jsbroome said:

    Germ Cell Tumor
    Per the above post, sounds like what is called an extragonadal germ cell tumor. Not sure if you are male or female, they can occur in either. These usually occur as testicular cancer in males and ovarian cancers (there are other non-germ cell types of ovarian cancer also) in women. However, occasionally they can occur in other, "extragonadal" locations. Most common extragonadal sites are retroperitoneum (abdomen) and mediastinum (chest). From there, diagnosis generally falls into either seminomatous or non-seminomatous germ cell tumors. Each carry a little different response and have different biological behaviors. Treatment depends on many factors like extent of disease at presentation, size, exact cell type, but chemo is generally used with all. Chemo could be administered either before or after surgery. With some of the less advanced seminomatous tumors, surgical resection is not recommended, only chemo. If your tumor is not responding after two cycles, it's probably non-seminomatous. Is surgical resection planned? The objective should be to perhaps reduce the size a bit, surgically resect and then follow. Even though the primary tumor is not responding as you would hope, chemo is still important because it treats the whole body, so if there are small groups of cells elsewhere that are undetectable, chemo should wipe them out. Do you know what chemo is being used...generally, should be some combination of cisplatin, etoposide, bleomycin, vincristine, ifosfamide. Usually for 4 cycles. It's a hard regimen so hang in there.

    www.cancer.gov, go to all cancer types off of home page, then scroll down to letter E and select link for Extragonadal Germ Cell Tumor

    I had a mediastinal primary germ cell tumor, diagnosed October 2007 and had an excellent response to therapy. So almost a year out with no evidence of disease. I am also a medical professional in the cancer field, thus my detailed answer above.

    God Bless and Best regards.

    Thank you so much for
    Thank you so much for responding to my post! I am a female 35yrs old. I was first diagnosed in march 2008. They believe it is stage four? I have the main tumor around my belly button area. Its a pretty good size. The others are smaller in the mesentary. The lymphs in my back are also inflamed. It hasnt spread at all since chemo. The first regimen I was on was the bleo, cysplatin, and the vp16. I went three cycles with the bleo and had to stop that due to really bad side effects, but I did finish the cycplatin and vp16. They didnt have any effect on the tumor but it didnt get any worse either. Presently I am taking Taxotere and carboplatin. I went one round with just the taxotere. I am going on my third round with both rite now. This is my last one before I go back to the doctors. I am currently seeing a specialist in unknown tumors at Slone Kettering. I receive my chemo in Upstate New York where I live. My doctor doesnt think anyone will touch it until it shrinks. He did take my scans and put them on the system at Slone to see if any sergons would respond. Did you have to get the Lunesta shot? If so what do you think about that? I have had it twice now the day after I get my chemo. It really kicks my butt! I think its worse than the chemo sometimes. Well thanks again for responding! It really made my day. I have felt so alone. It so hard when no one has answers. I didnt think I would ever find anyone who had this cancer.
  • nene05
    nene05 Member Posts: 10
    #5
    nene05 said:

    Thank you so much for
    Thank you so much for responding to my post! I am a female 35yrs old. I was first diagnosed in march 2008. They believe it is stage four? I have the main tumor around my belly button area. Its a pretty good size. The others are smaller in the mesentary. The lymphs in my back are also inflamed. It hasnt spread at all since chemo. The first regimen I was on was the bleo, cysplatin, and the vp16. I went three cycles with the bleo and had to stop that due to really bad side effects, but I did finish the cycplatin and vp16. They didnt have any effect on the tumor but it didnt get any worse either. Presently I am taking Taxotere and carboplatin. I went one round with just the taxotere. I am going on my third round with both rite now. This is my last one before I go back to the doctors. I am currently seeing a specialist in unknown tumors at Slone Kettering. I receive my chemo in Upstate New York where I live. My doctor doesnt think anyone will touch it until it shrinks. He did take my scans and put them on the system at Slone to see if any sergons would respond. Did you have to get the Lunesta shot? If so what do you think about that? I have had it twice now the day after I get my chemo. It really kicks my butt! I think its worse than the chemo sometimes. Well thanks again for responding! It really made my day. I have felt so alone. It so hard when no one has answers. I didnt think I would ever find anyone who had this cancer.

    Its me again. I was just
    Its me again. I was just thinking I wanted to tell you that when I had my tumor biopsy they said that it was germ cell (upstate) When I went to Slone they took my slides and after like three weeks they called my doctor and told her that they werent sure if it was actually germ cell. They said that it was presenting itself like a germ cell but it was showing features of a squamis cell? But they have not said anything since, and as far as I know they are treating it like a germ cell.
  • jsbroome
    jsbroome Member Posts: 2
    #6
    nene05 said:

    Its me again. I was just
    Its me again. I was just thinking I wanted to tell you that when I had my tumor biopsy they said that it was germ cell (upstate) When I went to Slone they took my slides and after like three weeks they called my doctor and told her that they werent sure if it was actually germ cell. They said that it was presenting itself like a germ cell but it was showing features of a squamis cell? But they have not said anything since, and as far as I know they are treating it like a germ cell.

    Sounds like you are getting
    Sounds like you are getting the best care possible. Great resources for cancer care in the northeast. Also, sounds like you are correct in that doctors are treating as if Germ Cell Tumor. Hopefully carbo and taxotere will have some effect...maybe a little more tolerable in terms of the side effects than bleo, cisplatin, vp16? Anyways, it's good news that you are not progressing, hopefully your next tests will show some reduction in size and that will make surgery possible, best wishes
  • BibleGeek
    BibleGeek Member Posts: 1
    #7
    nene05 said:

    Its me again. I was just
    Its me again. I was just thinking I wanted to tell you that when I had my tumor biopsy they said that it was germ cell (upstate) When I went to Slone they took my slides and after like three weeks they called my doctor and told her that they werent sure if it was actually germ cell. They said that it was presenting itself like a germ cell but it was showing features of a squamis cell? But they have not said anything since, and as far as I know they are treating it like a germ cell.

    Hope you are doing well...
    I went through a Germ Cell Cancer in 2005 - Went through 20 chemo treatments and a major surgery. Since it was next to my heart, they took out 1/3 of my lung and the pericardium. I've had no problems since then. I was 35 at the time.

    If you aren't Christian, now is probably a good time to turn to the Lord for strength. You can overcome this!
  • BriWri
    BriWri Member Posts: 8
    #8
    Germ Cell Tumor Survivor
    I hope you are doing well. I am a survivor of a mixed-cell mediastinal germ cell tumor and I know how hard the treatment is. I know it is discouraging that there didn't seem to be much shrinking of the tumor. I was in the same place myself. By the time I was diagnosed, my tumor was really big and they really buried me with treatment(2 rounds of outpatient chemo followed by two autologous stem-cell transplants). After such a heavy regimen, I was discouraged to find that the tumor had not shrunk much. I had surgery to remove the tumor and although it was still very large, the vast majority of it was dead. It still had the mass but it wasn't active. This was just my experience but I hope you can get some solace from it.
  • lupeann
    lupeann Member Posts: 9
    #9
    nene05 said:

    Its me again. I was just
    Its me again. I was just thinking I wanted to tell you that when I had my tumor biopsy they said that it was germ cell (upstate) When I went to Slone they took my slides and after like three weeks they called my doctor and told her that they werent sure if it was actually germ cell. They said that it was presenting itself like a germ cell but it was showing features of a squamis cell? But they have not said anything since, and as far as I know they are treating it like a germ cell.

    Bleo
    I also had a mixed germ cell tumor - ovarian dygerminoma. I took Bleo and Cisplatin and V16. I am 6 months out and would love to share stories. I have lung damage from the Bleo but I tolerated 18 weeks of it. Hang in there. If I can help, let me know!
  • Unknown
    Unknown
    #10
    This comment has been removed by the Moderator
  • sevenvoltes
    sevenvoltes Member Posts: 5
    edited August 2016 #11
    germ cell

    Could you share me your story? My son 21 when diagnosed with germ cell, 10 cm tumor at GI junction but shrunk to 3 cm lesion now. Then changed diagnosis to esophageal cancer. With too much of chemo, body is not responding.

     

    Thank you

  • sevenvoltes
    sevenvoltes Member Posts: 5
    #12
    nene05 said:

    Thank you so much for
    Thank you so much for responding to my post! I am a female 35yrs old. I was first diagnosed in march 2008. They believe it is stage four? I have the main tumor around my belly button area. Its a pretty good size. The others are smaller in the mesentary. The lymphs in my back are also inflamed. It hasnt spread at all since chemo. The first regimen I was on was the bleo, cysplatin, and the vp16. I went three cycles with the bleo and had to stop that due to really bad side effects, but I did finish the cycplatin and vp16. They didnt have any effect on the tumor but it didnt get any worse either. Presently I am taking Taxotere and carboplatin. I went one round with just the taxotere. I am going on my third round with both rite now. This is my last one before I go back to the doctors. I am currently seeing a specialist in unknown tumors at Slone Kettering. I receive my chemo in Upstate New York where I live. My doctor doesnt think anyone will touch it until it shrinks. He did take my scans and put them on the system at Slone to see if any sergons would respond. Did you have to get the Lunesta shot? If so what do you think about that? I have had it twice now the day after I get my chemo. It really kicks my butt! I think its worse than the chemo sometimes. Well thanks again for responding! It really made my day. I have felt so alone. It so hard when no one has answers. I didnt think I would ever find anyone who had this cancer.

    germ cell

    Can you please share your story. It seems that you and my son has similar experience.

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