HELP!!!! Thymic Carcinoma

BAMA1965
BAMA1965 Member Posts: 2
edited July 2011 in Rare and Other Cancers #1
My mother was diagnosed with Thymic Carcinoma. She has completed an aggressive chemo treatment, but the doctors said it is still inoperable because of the location. We were told the radiation treatment will be very intense, but would only add a few months of life. I would appreciate any input on different treatments and personal experience with this type of cancer. We understand this is a rare type of cancer, but hopefully someone can help us become more informed. Thank you.

Comments

  • laura3547
    laura3547 Member Posts: 1
    #2
    my mother also has TC
    Bama1965 - My mother was diagnosed with thymic carcinoma in Nov of 2008, also inoperable. It had metastasized to the lungs. She had 6 rounds of chemo, 7 weeks of radiation and was fine until last year when the growths in the lungs started growing again. 2 more rounds of chemo and we got that stabilized. Please find the thymic carcinoma group on yahoo. www.thymic.org should have a link to sign up. There you will find a number of people with TC and who have relatives with it - and some amazing treatment and success stories.

    *First and foremost* - make sure you are dealing with a doc who has seen this before and believes it can be treated.

    Hopefully, I will see you on the listserve.

    Good luck,
    Laura
  • BAMA1965
    BAMA1965 Member Posts: 2
    #3
    laura3547 said:

    my mother also has TC
    Bama1965 - My mother was diagnosed with thymic carcinoma in Nov of 2008, also inoperable. It had metastasized to the lungs. She had 6 rounds of chemo, 7 weeks of radiation and was fine until last year when the growths in the lungs started growing again. 2 more rounds of chemo and we got that stabilized. Please find the thymic carcinoma group on yahoo. www.thymic.org should have a link to sign up. There you will find a number of people with TC and who have relatives with it - and some amazing treatment and success stories.

    *First and foremost* - make sure you are dealing with a doc who has seen this before and believes it can be treated.

    Hopefully, I will see you on the listserve.

    Good luck,
    Laura

    Thanks Laura.

    Thanks Laura.
  • sngerson
    sngerson Member Posts: 1
    #4
    thymic carcinoma
    I have thymic carcinoma and have benefitted from a new medication, Sutent. Many oncologists don't know about it . If you email me at: sngerson@gmail.com, I will email you a copy of the article. sng
  • AM3737
    AM3737 Member Posts: 3
    #5
    thymic carcinoma
    I am a 42yo physician, wife and mother of 3 who was just diagnosed in Dec. 2010 with thymic carcinoma that has spread to the lining of the left lung (Pleura). I had aggressive chemo with about 60% decrease in the size of my thymic and pleural based tumor. I was initially told it was inoperable but then was seen at MD Anderson Cancer center and they said I was a surgical candidate since it was not in my bones( or other areas beyond the left pleura) and because of the good response to chemo. I had surgery just 3mths ago but unfortunately they saw a lot of small "spots" diffusely in my left pleura during the surgery that came back positive for the cancer. As a result they said I am currently not a candidate for radiation. Instead they are closely monitoring my scans and as it tries to grow then will start back on some type of treatment. I also would encourage those with this cancer to consider being seen at NIH(Bethesda,MD) as well as this is where the most research for this cancer is being done. I had my remaining tumor specimen sent there and entered a study where they are now able to sequence the DNA for this tumor. The hope is that if they can isolate a specific DNA mutation that is the cause of this cancer then they can work on eventually finding a cure. Also for those that have not had a good response to their current treatment they can consider being in a clinical trial at NIH. I have met a few patients while at NIH who are now in clinical trials all led by Dr.Giacconi.
  • jack20
    jack20 Member Posts: 1
    #6
    AM3737 said:

    thymic carcinoma
    I am a 42yo physician, wife and mother of 3 who was just diagnosed in Dec. 2010 with thymic carcinoma that has spread to the lining of the left lung (Pleura). I had aggressive chemo with about 60% decrease in the size of my thymic and pleural based tumor. I was initially told it was inoperable but then was seen at MD Anderson Cancer center and they said I was a surgical candidate since it was not in my bones( or other areas beyond the left pleura) and because of the good response to chemo. I had surgery just 3mths ago but unfortunately they saw a lot of small "spots" diffusely in my left pleura during the surgery that came back positive for the cancer. As a result they said I am currently not a candidate for radiation. Instead they are closely monitoring my scans and as it tries to grow then will start back on some type of treatment. I also would encourage those with this cancer to consider being seen at NIH(Bethesda,MD) as well as this is where the most research for this cancer is being done. I had my remaining tumor specimen sent there and entered a study where they are now able to sequence the DNA for this tumor. The hope is that if they can isolate a specific DNA mutation that is the cause of this cancer then they can work on eventually finding a cure. Also for those that have not had a good response to their current treatment they can consider being in a clinical trial at NIH. I have met a few patients while at NIH who are now in clinical trials all led by Dr.Giacconi.

    thymic carcinoma
    My daughter age 43, high school counselor, wife and mother of 2 was diagnosed in January 2011 with thymic carcinoma. She received aggressive chemo March through May with some reduction in size. She underwent surgery at Duke University Medical Center in June. She was initially told that the cancer had entered her left lung and she would most likely lose her lung. However, during surgery it was discovered that the cancer was not inside the lung therefore the lung was not removed. The lining of her left lung and her diaphram were removed. The surgeon reported that he believed he was able to remove approximately 99.9% of the cancer but had to leave a quarter size piece that was between the aorta and another large blood vessel. He believes that this can be best treated with radiation. She is recovering well from surgery and is scheduled to meet with the radiation oncologist on early August.

    I discovered your post on July 20 and told my daughter of your story as well as the information related to NIH. She went for a visit with her local oncologist today and told him of your story. He explained to her that he would like to talk with you. If that is possible please let me know and I will provide contact information.

    I pray that all is well with you and your family. I have no doubt that the past seven months have been very similar for our families.
  • Tatiana1
    Tatiana1 Member Posts: 3
    edited July 2018 #7
    jack20 said:

    thymic carcinoma
    My daughter age 43, high school counselor, wife and mother of 2 was diagnosed in January 2011 with thymic carcinoma. She received aggressive chemo March through May with some reduction in size. She underwent surgery at Duke University Medical Center in June. She was initially told that the cancer had entered her left lung and she would most likely lose her lung. However, during surgery it was discovered that the cancer was not inside the lung therefore the lung was not removed. The lining of her left lung and her diaphram were removed. The surgeon reported that he believed he was able to remove approximately 99.9% of the cancer but had to leave a quarter size piece that was between the aorta and another large blood vessel. He believes that this can be best treated with radiation. She is recovering well from surgery and is scheduled to meet with the radiation oncologist on early August.

    I discovered your post on July 20 and told my daughter of your story as well as the information related to NIH. She went for a visit with her local oncologist today and told him of your story. He explained to her that he would like to talk with you. If that is possible please let me know and I will provide contact information.

    I pray that all is well with you and your family. I have no doubt that the past seven months have been very similar for our families.

    Follow up question

    My husband has similar situatio. Will you please update the result of the chemo and radiation? We are just starting for a six weeks regimen.

    How is your daughter after the treatment? Hopefully there has not been any recurrenc.

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