Undifferentiated Embryonal Sarcoma Liver

Ali2011

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..

10 yr old son finished treatments with success!
My son was diagnosed with Embryonal Sarcoma of the liver Nov/2010 in Halifax, Canada at the IWK children's hospital. He was given a 20% chance for survival past one year.
The cancer was on his liver, abdominal wall and on his left lung. After 2 rounds of a combo of Ifosfamide and Doxirubicin, the cancer had shrunk by 40%. He had 2 more rounds and then scans. The cancer had been reduced significantly enough to schedule surgery. He had another round of the chemo combo and then a 9 hr surgery. The surgeon was able to remove all the cancer!! (And 1/2 of my son's liver). My son had another round (6th) of the chemo combo and then another surgery (a 2 hr thorocotomy) to remove the spot on his lower left lung (which the biopsy reported only scar tissue by this time). My son had one last round of chemo at the beginning of May. He had to continue taking an antibiotic until August to prevent lung infection. It is Sept now and he is back in school, we have signed up at the gym together to run and he is feeling and looking amazing. He returns to the IWK for scans in 2 weeks and will continue getting scans every 3 months for the next 2 years.
We are so thankful everyday!

sloane614

LindaDawn said:

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.

One year two months post dx and cancer free!
Just wanted to put out there that Olivia has finished her treatments, and had two clean scans. She is doing well and is cancer free, praise the Lord! Olivia's body has bounced back well, and she now has lots of hair, gained 35 pounds, and grew 3.5 inches since finishing chemo in April 2011. Aside from reduced stamina, which will come in time, she is a happy, healthy, 5th grader. I plan to post for a long, long time that she is a cancer survivor!
Sloane

jenlat21

sloane614 said:

One year two months post dx and cancer free!
Just wanted to put out there that Olivia has finished her treatments, and had two clean scans. She is doing well and is cancer free, praise the Lord! Olivia's body has bounced back well, and she now has lots of hair, gained 35 pounds, and grew 3.5 inches since finishing chemo in April 2011. Aside from reduced stamina, which will come in time, she is a happy, healthy, 5th grader. I plan to post for a long, long time that she is a cancer survivor!
Sloane

Almost 4 yrs in remission!!
My son Chase was 6 years old in Dec 2006 when he was diagnosed with embryonal sarcoma of the liver. He received his treatment at Children's Hospital Minneapolis and his tumor ressection at Mayo. It has been almost 4 years since he has been in remission and is doing amazing!!! He even played junior high football this past fall (something I never imagined he would be able to do)! We are soooo grateful for the great treatment and amazing doctors he has had in the past 5 years. On January 2 2012 we will celebrate 4 years and be looking forward to Jan 2013 when we can officially say he is a CANCER SURVIVOR!!

akiko

LindaDawn said:

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.

Treatment
Hi Linda,

I believe I have the same one with you had. So glad to know one person cured from this.

I have a question. Did you go through surgery and chemotherapy only? After that, did doctor check your condition by CT scan?

LindaDawn

akiko said:

Treatment
Hi Linda,

I believe I have the same one with you had. So glad to know one person cured from this.

I have a question. Did you go through surgery and chemotherapy only? After that, did doctor check your condition by CT scan?

Thw whole nine yards
I had my initial surgery, a liver bisection, before I was diagnosed. I then had to have a second surgery to procure clean margins. I lost 2/3rds of my liver and a volleyball sized tumor. I then had six months of intesive chemo and i have regular ct scans to keep an eye out. So far so good. How are you doing? Feel free to ask whatever you would like. There are few of us out there so we need to help where we can.

LindaDawn

akiko said:

Treatment
Hi Linda,

I believe I have the same one with you had. So glad to know one person cured from this.

I have a question. Did you go through surgery and chemotherapy only? After that, did doctor check your condition by CT scan?

The whole nine yards
I had my initial surgery, a liver bisection, before I was diagnosed. I then had to have a second surgery to procure clean margins. I lost 2/3rds of my liver and a volleyball sized tumor. I then had six months of intesive chemo and i have regular ct scans to keep an eye out. So far so good. How are you doing? Feel free to ask whatever you would like. There are few of us out there so we need to help where we can.

djredlion

LindaDawn said:

The whole nine yards
I had my initial surgery, a liver bisection, before I was diagnosed. I then had to have a second surgery to procure clean margins. I lost 2/3rds of my liver and a volleyball sized tumor. I then had six months of intesive chemo and i have regular ct scans to keep an eye out. So far so good. How are you doing? Feel free to ask whatever you would like. There are few of us out there so we need to help where we can.

Linda,
It sounds as if
Linda,
It sounds as if you have the type of cancer with which my mother has been diagnosed. She's in ICU right now and we are prayerfukllky waiting for her to het out of the critical unit alive. I hope that she is one of the few who survives. I've read your posts, along with others, and they give me hope. Untik a few minutes ago, I was going through it. Sorry to ramble. Any information or insight that you or anyone else has is welcome.

LindaDawn

djredlion said:

Linda,
It sounds as if
Linda,
It sounds as if you have the type of cancer with which my mother has been diagnosed. She's in ICU right now and we are prayerfukllky waiting for her to het out of the critical unit alive. I hope that she is one of the few who survives. I've read your posts, along with others, and they give me hope. Untik a few minutes ago, I was going through it. Sorry to ramble. Any information or insight that you or anyone else has is welcome.

Keep hope alive
I am sorry it has taken me so long to reply. I have been distracted by some wonderfull life events. My daughters graduation, my son's marriage. I hope your mother is progressing well. Please know that there is hope. I am proof of that. My prayers for you and your family are flying up as I type.

Lorine73

I had  the same exact

I had  the same exact thing...rarely found in adult with chemo treatment to follow after removal of cyst like object.

embryonal sarcoma

LindaDawn

Lorine73 said:

I had  the same exact

I had  the same exact thing...rarely found in adult with chemo treatment to follow after removal of cyst like object.

embryonal sarcoma

Feel free to talk

Lorine73,

 

I am four years out of treatment. How are you doing?  Is this recent for you? I will check back soon.

atlantis0857

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.

Undifferentiated Embryonal Sarcoma Liver

Thank you for posting - you give us hope! Best wishes for a long and happy life!

VAMomof3

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!

Hi Matt, I wanted to say thank you for sharing your story and posting on this site.  My daughter is now 2 years off treatments and is getting ready to go to High School.  She is doing great and Scans still show no signs of any tumors ALL CLEAR!  She like others with UESL had her right side of the liver removed with a 12cm tumor.  6 Months of aggressive in-patient Chemo.  She still has some days she feels a little blue of what she has had to see and experiense at such a young age.  Sometimes she feels guilty for being so healthy, specially when she finds out about another angel taken by Cancer.  I never thought I'd look forward to the teenage years, but she is full of energy.  The journey has made her a great person and life lessons she still teaches me!  I as a mother will always dread the waiting of each scan result and the fears of her cancer returning, that hopeless feeling of not being able to "fix it".  I see you are on your way to college..and this is such a great milestone!  Congratulations, you inspire many!!  I look forward to the day I post in here to celebrate the next milestone in my daughters life. 

THANK YOU!!

SarahJ86

New Diagnosis

I was recently diagnosed with undifferentiated embryonal sarcoma of the liver at 27 after a resection of 82% of my liver and removal of my gallbladder. Fortunately, my tumor was fully encapsulated with clear margins and my liver has grown back. Unfortunately, my oncologist wants to put my on four months of chemotherapy starting next month after my incision is fully healed. It's been a hard six weeks, especially since my first diagnosis was gallstones.

I was wondering if anyone wanted to comment on their tolerance of ifosfamide or doxorubicin. I am particularly concerned about the neurological side effects and cardiotoxicity concerns. I cannot decide if I really want to put myself through it or not, given that my doctor seems to be leaning only slightly towards doing it, given my clear margins and lack of evidence of metastases. Any advice or information anyone could provide would be very helpful.

LindaDawn

SarahJ86 said:

New Diagnosis

I was recently diagnosed with undifferentiated embryonal sarcoma of the liver at 27 after a resection of 82% of my liver and removal of my gallbladder. Fortunately, my tumor was fully encapsulated with clear margins and my liver has grown back. Unfortunately, my oncologist wants to put my on four months of chemotherapy starting next month after my incision is fully healed. It's been a hard six weeks, especially since my first diagnosis was gallstones.

I was wondering if anyone wanted to comment on their tolerance of ifosfamide or doxorubicin. I am particularly concerned about the neurological side effects and cardiotoxicity concerns. I cannot decide if I really want to put myself through it or not, given that my doctor seems to be leaning only slightly towards doing it, given my clear margins and lack of evidence of metastases. Any advice or information anyone could provide would be very helpful.

To chemo or not to chemo

I too was misdiagnosed at first, eventually had two liver surgeries and opted for chemo.  I had five different chemo drugs and six months of treatments.  I handled it well-ish.  Fatigue and nausea were my two biggest side effects. Also, because of my low whites (neutropenic I think they call it) I would sometimes be hospitalized to rid myself of an infection. The Docs eventually(after six months) said that is enough.  I am five years out of treatment and do not regret my choice.  They don't know if it really made a difference or not.  I have some long term effects of this aggressive chemo treatment.  I lost height, suffered chemo brain, and loss of some hearing due to antibiotics.   I also have not fully regained my physical activity.  Due to my two surgeries and long convelescence.  My heart is fine, my brain seems to be back on-line and i am thrilled to be attending life events I wasn't sure I would be physically present for.  All that said, the drs. admit they just don't know this cancer well enough.   

My prayers are with you as you make this decision.  Let us know how you progress.

bethy17048

LindaDawn said:

To chemo or not to chemo

I too was misdiagnosed at first, eventually had two liver surgeries and opted for chemo.  I had five different chemo drugs and six months of treatments.  I handled it well-ish.  Fatigue and nausea were my two biggest side effects. Also, because of my low whites (neutropenic I think they call it) I would sometimes be hospitalized to rid myself of an infection. The Docs eventually(after six months) said that is enough.  I am five years out of treatment and do not regret my choice.  They don't know if it really made a difference or not.  I have some long term effects of this aggressive chemo treatment.  I lost height, suffered chemo brain, and loss of some hearing due to antibiotics.   I also have not fully regained my physical activity.  Due to my two surgeries and long convelescence.  My heart is fine, my brain seems to be back on-line and i am thrilled to be attending life events I wasn't sure I would be physically present for.  All that said, the drs. admit they just don't know this cancer well enough.   

My prayers are with you as you make this decision.  Let us know how you progress.

LindaDawn

Do you know the exact protocol you were on?

 

LindaDawn

treatment

I was on the ewings sarcoma treatment.   It is amazing that I can't remember all the names.  You could have your Dr. call beth Isreal Deaconess in Boston.  The sarcoma dept. they should be able to tell you.  Dr. Severese (sp?) was the one who proposed my treatment.  I know I had doxirubin, isofimide, and three others.  I will check and post if I can.

bethy17048

LindaDawn said:

treatment

I was on the ewings sarcoma treatment.   It is amazing that I can't remember all the names.  You could have your Dr. call beth Isreal Deaconess in Boston.  The sarcoma dept. they should be able to tell you.  Dr. Severese (sp?) was the one who proposed my treatment.  I know I had doxirubin, isofimide, and three others.  I will check and post if I can.

Thank you Linda dawn !!

However i have already done some of the combinations, and my oncologist doesn't want to due them again , my last chemo regimn was taxotere,and gemzar which has shrunk my tumors so they work on this type of cancer and does not make you very sick..

However since my last treatment was in nov. 28,2012 My tumors were "stable". In july I decided with the help of my dr. to go the the national institute of health (NIH) and start doing new trial with the national cancer insitute (nci). As of this point the first trial did not wotk my tumors started to grow again so I am in the process of going back to start another trial.

My hope is to find something that will cure this cancer. I am a 3 time survivor of this embryonal cell sarcoma and currently still fighting for the 4th.. As aways say cancer isn't beating me I WILL beat it. Being finging since nov.1998...

 

 

LindaDawn

5 th birthday

I am celebrating another birthday.  the future looks bright.

SarahJ86

LindaDawn said:

5 th birthday

I am celebrating another birthday.  the future looks bright.

Happy Birthday! And thank you

Happy Birthday! And thank you for your dedication to responding to posts on the board. I take a great deal of comfort in hearing your story.

NoriO

LindaDawn said:

5 th birthday

I am celebrating another birthday.  the future looks bright.

Happy Birthday and Thank you

Happy Birthday, Linda!

 

I was also diagnosed with UES 4 months ago.

As you know there are not much information for this Sarcoma, but your posts has been giving me hope.

Thank you sooo much!