Undifferentiated Embryonal Sarcoma Liver

LindaDawn
LindaDawn Member Posts: 27
edited March 2014 in Sarcoma #1
I was diagnosed with Undifferentiated Embryonal Sarcoma of the Liver after a liver operation in November. They thought they were removing a very large cyst. I have since had an additional liver surgery and am slated to begin Chemo soon. Since this cancer is so rare in adults they have decided to use a Ewings protocol for me. I am looking for any information on what to expect. Are there other adults out there that have this cancer or something close?
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Comments

  • rhenry3
    rhenry3 Member Posts: 8
    #2
    EUS
    How are you doing? I know this sounds weird but I was actually glad to find at least one person alive that has been diagnosed with EUS. My son, Ethan, was dx on Feb 6, 2009. He was six years old at the time and after completing 6 rounds of chemo, received a liver transplant on May 29, 2009. What chemotherapy treatment are you being treated with? What is your plan for treatement? Is your tumor resectable?
  • Kay7
    Kay7 Member Posts: 1
    #3
    Undiff Embryonal Sarcoma
    I would also like to know how you are doing? I was also diagnosed with this rare form of cancer. I am recovering from surgery and am currently facing chemo.
  • LindaDawn
    LindaDawn Member Posts: 27
    #4
    Kay7 said:

    Undiff Embryonal Sarcoma
    I would also like to know how you are doing? I was also diagnosed with this rare form of cancer. I am recovering from surgery and am currently facing chemo.

    I got through it
    I was treated with chemo for 6 months. It was a very aggressive regime. I was admitted to the hospital for two days and then three weeks later for six, that was repeated for 8 cycles. It is chemo designed for Ewings sarcoma. I think the most exciting thing is that I am done. My cat scans so far have been clear and I don't see a dr. again for three months. Please feel free to ask any questions you might have. Did you have the sarcoma on your liver?
  • LindaDawn
    LindaDawn Member Posts: 27
    #5
    rhenry3 said:

    EUS
    How are you doing? I know this sounds weird but I was actually glad to find at least one person alive that has been diagnosed with EUS. My son, Ethan, was dx on Feb 6, 2009. He was six years old at the time and after completing 6 rounds of chemo, received a liver transplant on May 29, 2009. What chemotherapy treatment are you being treated with? What is your plan for treatement? Is your tumor resectable?

    Treatment
    I was treated with the regime for Ewings Sarcoma. I have finished treatment three weeks ago. My tumor was resected. I lost two thirds of my liver. My liver is doing fine, as am I. My doctors said that the regime I had was designed for children and they often tolerate chemotherapy better than adults. Please feel free to ask any questions. I feel blessed to be done and would like to help any way I can.
  • rhenry3
    rhenry3 Member Posts: 8
    #6
    LindaDawn said:

    I got through it
    I was treated with chemo for 6 months. It was a very aggressive regime. I was admitted to the hospital for two days and then three weeks later for six, that was repeated for 8 cycles. It is chemo designed for Ewings sarcoma. I think the most exciting thing is that I am done. My cat scans so far have been clear and I don't see a dr. again for three months. Please feel free to ask any questions you might have. Did you have the sarcoma on your liver?

    Undifferentiated Sarcoma
    My son just finished all chemotherapy and will meet with his oncologist here in Pittsburgh one last time before returning to Oklahoma later this week. His latest CT Scans show no evidence of disease but we will have scans every 3 months for the next 1-3 years. He still has to return to Pittsburgh next summer to have his abdominal muscle closed as they had to remove 40% of the muscle as the tumor had invaded the muscle after his open biopsy compromised the capsule that originally contained the tumor inside the liver. I am still concerned about recurrence as well as post effects of the chemotherapy and anti-rejection medications but for now he seems to be doing great. www.caringbridge.org/visit/ethanhenry3
  • Unknown
    Unknown
    #7
    This comment has been removed by the Moderator
  • sloane614
    sloane614 Member Posts: 5
    #8
    rhenry3 said:

    Undifferentiated Sarcoma
    My son just finished all chemotherapy and will meet with his oncologist here in Pittsburgh one last time before returning to Oklahoma later this week. His latest CT Scans show no evidence of disease but we will have scans every 3 months for the next 1-3 years. He still has to return to Pittsburgh next summer to have his abdominal muscle closed as they had to remove 40% of the muscle as the tumor had invaded the muscle after his open biopsy compromised the capsule that originally contained the tumor inside the liver. I am still concerned about recurrence as well as post effects of the chemotherapy and anti-rejection medications but for now he seems to be doing great. www.caringbridge.org/visit/ethanhenry3

    Undifferentiated Embryonal Sarcoma of the Liver
    I have to breathe deeply in reading there are others out there who have had this diagnosis and are doing well. My daughter (age 9) was diagnosed with this three weeks ago, had a large tumor removed from her liver (totally gone) and is beginning her treatment protocol. She too is receiving the treatment for Ewings sarcoma, 3 day-5 day chemo rotation every three weeks. They are planning to treat her for 9 months and are tossing around a second look surgery later on to make certain that her liver is still ok. She is doing well, recovered from surgery and has been showing little effect from her first round of chemo. I am optimistic, but it is hard to constantly hear "rare tumor" and "sarcomas are aggressive" . We have a great team and are heading to Philly for a consult on Wed. Please pray for my daughter and let me hear more stories of hope!
  • LindaDawn
    LindaDawn Member Posts: 27
    #9
    sloane614 said:

    Undifferentiated Embryonal Sarcoma of the Liver
    I have to breathe deeply in reading there are others out there who have had this diagnosis and are doing well. My daughter (age 9) was diagnosed with this three weeks ago, had a large tumor removed from her liver (totally gone) and is beginning her treatment protocol. She too is receiving the treatment for Ewings sarcoma, 3 day-5 day chemo rotation every three weeks. They are planning to treat her for 9 months and are tossing around a second look surgery later on to make certain that her liver is still ok. She is doing well, recovered from surgery and has been showing little effect from her first round of chemo. I am optimistic, but it is hard to constantly hear "rare tumor" and "sarcomas are aggressive" . We have a great team and are heading to Philly for a consult on Wed. Please pray for my daughter and let me hear more stories of hope!

    Sloane 614
    I hope all is
    Sloane 614

    I hope all is going well with your daughter. I am almost two years from diagnosis with no reoccurance. So far so good. This sarcoma is much more common in children and children handle chemo better than adults. So that is on the plus side for your daughter. Rare does not mean worse. I had to wrap my mind around that. Youe are in my prayers
  • sloane614
    sloane614 Member Posts: 5
    #10
    LindaDawn said:

    Sloane 614
    I hope all is
    Sloane 614

    I hope all is going well with your daughter. I am almost two years from diagnosis with no reoccurance. So far so good. This sarcoma is much more common in children and children handle chemo better than adults. So that is on the plus side for your daughter. Rare does not mean worse. I had to wrap my mind around that. Youe are in my prayers

    thanks for your kind words
    Thanks for your reply. Things continue to go well and I have all the hope in the world that Olivia will remain disease free. I am so glad to hear that you are 2-yrs disease free as well!! I will pray for your continued health and wellness! You are right, rare does not mean worse...the dr at CHOP basically said the same thing. He said there are survivors, you simply dont hear about this cancer so you dont hear the good. Rare is not worse, I too am trying to wrap my head around that. God Bless!
  • VAMomof3
    VAMomof3 Member Posts: 2
    #11
    sloane614 said:

    thanks for your kind words
    Thanks for your reply. Things continue to go well and I have all the hope in the world that Olivia will remain disease free. I am so glad to hear that you are 2-yrs disease free as well!! I will pray for your continued health and wellness! You are right, rare does not mean worse...the dr at CHOP basically said the same thing. He said there are survivors, you simply dont hear about this cancer so you dont hear the good. Rare is not worse, I too am trying to wrap my head around that. God Bless!

    11yr old daughter just diagnosed
    My daughter was just diagnosed with this cancer. She had the entire right side of her liver removed. Surgery went well and she'll be starting Chemo next week. The hardest thing so far has been getting more information on this cancer. It is scary and have so many questions on what to expect. I still have not met with the social worker at CHOP and have not yet met another family going through this. Any words of advise would help tremendously.

    thank you..
  • LindaDawn
    LindaDawn Member Posts: 27
    #12
    VAMomof3 said:

    11yr old daughter just diagnosed
    My daughter was just diagnosed with this cancer. She had the entire right side of her liver removed. Surgery went well and she'll be starting Chemo next week. The hardest thing so far has been getting more information on this cancer. It is scary and have so many questions on what to expect. I still have not met with the social worker at CHOP and have not yet met another family going through this. Any words of advise would help tremendously.

    thank you..

    I'm still doing well...
    This is a rare cancer and even rarer in adults. I had 2/3rds of my liver removed and intensive chemo for 6 months. Children handle chemo better and they said if I were young my treatment would have been 9 months to a year. My body could only handle six months. They used the chemo protocol that is ysed for Ewings sarcoma. Here's the good news...I am fine. No reoccurance so far and it has been a year and a half since I finished treatment. Rare does not mean worse. It just meant for me that they would use the big guns because they were not sure what would happen. Please feel free to ask questions. What type of chemo is your daughter getting? I am sending up a prayer for you and her right now.
  • rhenry3
    rhenry3 Member Posts: 8
    #13
    VAMomof3 said:

    11yr old daughter just diagnosed
    My daughter was just diagnosed with this cancer. She had the entire right side of her liver removed. Surgery went well and she'll be starting Chemo next week. The hardest thing so far has been getting more information on this cancer. It is scary and have so many questions on what to expect. I still have not met with the social worker at CHOP and have not yet met another family going through this. Any words of advise would help tremendously.

    thank you..

    UES
    Haven't posted on here in awhile. Just wanted to drop in as I saw that there were a couple of recent dx. Ethan is now 1yr 9mos post transplant and 1 yr 4 mos post chemo and doing very well. I am a little anxious just because this past week marked the 2 year anniversary of his dx and we have scans on the 14th but overall everything is going very well. He just earned his orange belt in Tae Kwon Do and will be competing on the 26th in his first tournament in both sparring and board breaking. He is an amazing kid and he is proof that there is LIFE beyond cancer. He will forever be a transplant patient and will always be on anti-rejection meds; however, this has not stopped him at all. There is still some residual effects from the chemo (neuropathy in his hands and feet, lowered stamina and some muscle issues) but all things considered he is a complete miracle. There is another 14 year old girl from Oklahoma who has spent the last 2 years fighting this cancer and she is finally home from Cincinatti Children's and doing fabulous. Carson Hand just crossed the 5 year mark of being cancer-free and Jason Mlot is well on his way. This cancer is very aggressive but there is HOPE! www.caringbridge.org/visit/ethanhenry3
  • MattCallahan16
    MattCallahan16 Member Posts: 1
    #14
    Hi. I was diagnosed with
    Hi. I was diagnosed with Undifferentiated Sarcoma of the Liver eleven years ago, when I was eight. I just want to say to anyone who has a family member going through this or is going through it themselves that it is possible to get through it. After removing half of my liver and a year of chemo. I'm nineteen now and in college, and I'm as healthy as a horse. I don't know if anyone is actually going to read this, but if it helps one person, than it's worth all the stuff I went through. I hope you all have great, long lives.
  • sloane614
    sloane614 Member Posts: 5
    #15
    MattCallahan16 said:

    Hi. I was diagnosed with
    Hi. I was diagnosed with Undifferentiated Sarcoma of the Liver eleven years ago, when I was eight. I just want to say to anyone who has a family member going through this or is going through it themselves that it is possible to get through it. After removing half of my liver and a year of chemo. I'm nineteen now and in college, and I'm as healthy as a horse. I don't know if anyone is actually going to read this, but if it helps one person, than it's worth all the stuff I went through. I hope you all have great, long lives.

    WHOO HOOO!
    Matt,
    So glad to see another survivor doing well, living life and enjoying thier health. My daughter just finished seven months of chemo for this disease and already she is feeling better and GROWING EYEBROWS :) She had just turned 9 when she was diagnosed. It is my prayer for you to continue with college, have much success, and maintain excellent health. ALL of the kids who have been afflicted with this cancer seem to be just extrordinary individuals; destined for greatness...you included!
    Thanks for sharing and God Bless,
    Sloane Radcliffe
  • noxidrw
    noxidrw Member Posts: 1
    #16
    MattCallahan16 said:

    Hi. I was diagnosed with
    Hi. I was diagnosed with Undifferentiated Sarcoma of the Liver eleven years ago, when I was eight. I just want to say to anyone who has a family member going through this or is going through it themselves that it is possible to get through it. After removing half of my liver and a year of chemo. I'm nineteen now and in college, and I'm as healthy as a horse. I don't know if anyone is actually going to read this, but if it helps one person, than it's worth all the stuff I went through. I hope you all have great, long lives.

    Embrynol Sarcoma
    A sweet child from my community was recently diagnosed with Embrynol Sarcoma I do not know if that is similar or the same as what you had, but the family is looking for someone who has experienced something similar possibly for hope or guidance. I do not know if you would be willing to contact them at their Caring Bridge site or not, I would appreciate it and I think they would too. I thank God for your success and freedom from cancer.

    http://www.caringbridge.org/visit/MeganWegge/journal

    Bill
  • Jwegge
    Jwegge Member Posts: 2
    #17
    MattCallahan16 said:

    Hi. I was diagnosed with
    Hi. I was diagnosed with Undifferentiated Sarcoma of the Liver eleven years ago, when I was eight. I just want to say to anyone who has a family member going through this or is going through it themselves that it is possible to get through it. After removing half of my liver and a year of chemo. I'm nineteen now and in college, and I'm as healthy as a horse. I don't know if anyone is actually going to read this, but if it helps one person, than it's worth all the stuff I went through. I hope you all have great, long lives.

    Thank you
    Thank you for posting, and yes your story has lifted my spirits as my 11 year old daughter was just diagnosed with UES She had 50% of her liver removed on April 19th where her very large tumor was resected in full except the bad news was that the tumor had ruptured. Megan will begin a 6 round chemotherapy treatment starting next week.
    I am so glad for your recovery and that you are disease free! Best wishes to you always and I will add you to our prayers so that you will always remain disease free!
  • Jwegge
    Jwegge Member Posts: 2
    #18
    sloane614 said:

    WHOO HOOO!
    Matt,
    So glad to see another survivor doing well, living life and enjoying thier health. My daughter just finished seven months of chemo for this disease and already she is feeling better and GROWING EYEBROWS :) She had just turned 9 when she was diagnosed. It is my prayer for you to continue with college, have much success, and maintain excellent health. ALL of the kids who have been afflicted with this cancer seem to be just extrordinary individuals; destined for greatness...you included!
    Thanks for sharing and God Bless,
    Sloane Radcliffe

    Olivia and Megan
    Dear Sloane,
    Thank you for reaching out to us. Megan was diagnosed with UES of the liver as well and 50 % of her liver was removed on April 19th. Her tumor was resected however it had ruptured. Her Dr,s here at Children's will be using Ifosfimide, Mesna and Doxorubicin during a 3 day cycle 6 times over a 6 month period. Yesterday her primary Oncologist mentioned a second surgery and also radiation to the site of the tumor. Does this sound like Olivia's treatment? I am very scared and worry that there is more or better out there. I need to know that I am doing the best for her.
    Congratulations for the wonderful news you recently received. I pray for that day for us.
    I will add Olivia to my prayers for a disease free and wonderful full life!
    Jodi Wegge
    Jwegge@hotmail.com
  • sloane614
    sloane614 Member Posts: 5
    #19
    VAMomof3 said:

    11yr old daughter just diagnosed
    My daughter was just diagnosed with this cancer. She had the entire right side of her liver removed. Surgery went well and she'll be starting Chemo next week. The hardest thing so far has been getting more information on this cancer. It is scary and have so many questions on what to expect. I still have not met with the social worker at CHOP and have not yet met another family going through this. Any words of advise would help tremendously.

    thank you..

    embryonal sarcoma of liver
    Not sure where you are located, but we consulted with CHOP (philadelphia) for our 9yr old daughter when she was diagnosed with embryonal sarcoma of the liver in September 2010. To date she has taken 10 out of 14 total treatments on the Ewings sarcoma protocol, and did not need radiation since her tumor was resected. Olivia is doing really well - the treatments are progressively harder for her little body to handle but that really only started happening half way through therapy. These kids are amazing fighters !! The doctors are thinking she will be finished with chemo by the beginning of April. If you want to chat, please feel free to contact me. I know how hard this is, and how scary it is to watch your child fight a fight that NO ONE should ever have to endure.
    Saying prayers for your family,
    Sloane
    www.caringbridge.org/visit/oliviaradcliffe
  • Lily619
    Lily619 Member Posts: 1
    #20
    Jwegge said:

    Thank you
    Thank you for posting, and yes your story has lifted my spirits as my 11 year old daughter was just diagnosed with UES She had 50% of her liver removed on April 19th where her very large tumor was resected in full except the bad news was that the tumor had ruptured. Megan will begin a 6 round chemotherapy treatment starting next week.
    I am so glad for your recovery and that you are disease free! Best wishes to you always and I will add you to our prayers so that you will always remain disease free!

    My Niece
    My niece was diagnosed with this disease at the age of 19 and after surgery and treatment went into remission for about a year but died before she turned 21. My family has been affected by many different types of cancer, from breast cancer to colon cancer to palate cancer and then this type. This one is by far, in my opinion, the most agressive and damaging. I hope everyone here has better luck with this type of cancer. Best wishes.
  • LindaDawn
    LindaDawn Member Posts: 27
    #21
    Lily619 said:

    My Niece
    My niece was diagnosed with this disease at the age of 19 and after surgery and treatment went into remission for about a year but died before she turned 21. My family has been affected by many different types of cancer, from breast cancer to colon cancer to palate cancer and then this type. This one is by far, in my opinion, the most agressive and damaging. I hope everyone here has better luck with this type of cancer. Best wishes.

    I am still going strong
    Lilly,I am so sorry for the loss of your niece.
    I am an unusual target for this cancer as I am older. (50 years) I have had two liver surgeries and heavey duty Chemotherapy. That finished up two years ago and i am still here typing away. They do not discuss my condition as in remission, they discuss it as a cure. So far, so good. I have no evidence of the cancer. This cancer is so rare for an adult that all treatments are a bit of a shot in the dark, but I am currently healthy, working two jobs and growing my hair long.
    All of you who are dealing with this cancer, myself included, must stay positive and optimistic.

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