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Undifferentiated Embryonal Sarcoma Liver
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Feb 15, 2009 - 12:15 pm
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? |
Joined: Jul 2009
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?
Joined: Feb 2009
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.
Joined: Aug 2009
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.
Joined: Feb 2009
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?
Joined: Jul 2009
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
Joined: Sep 2010
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!
Joined: Feb 2009
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
Joined: Sep 2010
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!
Joined: Dec 2010
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..
Joined: Feb 2009
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.
Joined: Sep 2010
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
Joined: Jul 2009
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
Joined: Sep 2011
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!
Joined: Sep 2011
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!
Joined: Apr 2011
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.
Joined: Sep 2010
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
Joined: Apr 2011
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
Joined: Apr 2011
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
Joined: Apr 2011
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!
Joined: Jun 2011
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.
Joined: Feb 2009
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.
Joined: Sep 2010
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
Joined: Dec 2011
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!!
Joined: Feb 2012
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?
Joined: Feb 2009
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.
Joined: Feb 2009
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.
Joined: May 2012
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.
Joined: Feb 2009
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.
Joined: May 2012
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.
Joined: Jul 2012
I also have embryonal cell sarcoma of the liver. My first diagnosis was in 1999. My most recent diagnosis was just last week this is my 4th reoccurance.. I guess I here looking for answers. I did 2 different types of chemo with they surgically removing the tumors all the time, then would be cancer free for a couple years, but however its back and this time they can't remove it due to the tumor is on my main artery, So i start chemo next week but my dr. wasn't sure what protocal he wanted to give me.. Thanks to this site I am going to ask about the ewings sarcoma one.It looks like you guys are having good luck with it So maybe it will due the same.. I was always told this cancer is very rare I'm glad I finally found some people that have the same thing.. Any info would be nice.. May God bless all of you..
Joined: Feb 2009
I am a bit surprised thatit seems as if more and more of us adults are diagnosed with this. My Docs said it was extremely rare. Maybe they should check these discussion boards and start talking to each other. I hope your doctor checks out this regime. It is really a rough go, but hey, I am still clear four years out from treatment. Please update your progress, keep hope alive, and feel free to ask any questions that you might have. My thoughts and prayers are with you.
Joined: Sep 2012
Linda,
I have been reading through all of the posts on here and there aren't many. But you seem to always be there trying to help. I was diagnosed with this about a month ago. I had my tumor completely removed, they got all of it along with the whole right side of my liver, gallbladder, and a portion of my diaphragm. I was out of the hospital in 5 days and back home. But ended up in the hospital again less than 2 weeks later. I was in the hospital this time for a week and a half. My chest cavity had filled with fluid and I couldn't breathe. While I was in the hospital I also got a mersa infection. I came home from the hospital last friday and now am facing chemo sometime soon. I am terrified at the thought of chemo. It may be vain but I don't want to loose my hair. What was chemo like for you? I know its most likely different for different people. My children 3 and 2 have been staying with family because I was so sick and now I have to heal. I miss them desperately. I just would like some sort of idea as to how I will feel when it comes to taking care of my kids when they come home which I hope is soon. thank you in advance. :)
Joined: Sep 2012
Linda,
I have been reading through all of the posts on here and there aren't many. But you seem to always be there trying to help. I was diagnosed with this about a month ago. I had my tumor completely removed, they got all of it along with the whole right side of my liver, gallbladder, and a portion of my diaphragm. I was out of the hospital in 5 days and back home. But ended up in the hospital again less than 2 weeks later. I was in the hospital this time for a week and a half. My chest cavity had filled with fluid and I couldn't breathe. While I was in the hospital I also got a mersa infection. I came home from the hospital last friday and now am facing chemo sometime soon. I am terrified at the thought of chemo. It may be vain but I don't want to loose my hair. What was chemo like for you? I know its most likely different for different people. My children 3 and 2 have been staying with family because I was so sick and now I have to heal. I miss them desperately. I just would like some sort of idea as to how I will feel when it comes to taking care of my kids when they come home which I hope is soon. thank you in advance. :)
Joined: Sep 2012
i guess it all depends on the type of chemo. I had Gleevix which caused hair loss but wasn't all that terrible. Then I had some experimental drug I don't even remember the name of and Doxirubicyn (?) those were all IV, now I am on Nexavar which is a pill form fo chemo and really nothing to talk about.
The Doxirubicyn was tough. I am a guy and not much hair to speak of, so you know, no big deal. I know it really bothers the ladies, and I can understand, with those nice heads of hair you guys have.
Look, I ain't gonna lie to you, even with the crappy fine hair I have I remember waking up and looking at my pillow one morning. It looked like a hairy chia pet blew up around my cranium!
That kinda messed with me. SO i marched right down to the barber and shaved my head. I didn't mind it actually, seems I have a nice shaped head. The things you aldies ntice...LOL! What did bother me was losing my goatee, I have had it for 31 years. I felt naked! I think you s hould do the hat or cool scarf thing.
I am sorry, but you know, it passes, hair grows back. Oh yeah! Cool thing for me was I had a life time of fine hair (wife says it's like a childs hair) and when it grew back it was wavy and curly. Pretty cool!
Sodon't worry, take it a day at a time, sufficent for each day is its own worry, don't look ahead to worries you don't yet have. Stay positive!
All the best.
Tom
Joined: Feb 2009
burrows616, take a deep breath and appreciate it. I made a dear freind on the liver ward of the hospital and she continued to remind me that this is the day we have been given.
I had a very, very intense chemo- five different kinds. Six days in then 3 weeks and then three days in.
Two of the things about my experience I disliked the most was losing my hair, and being hooked up to my thin twin (the iv) for six days. The thin twin made me go to the bathroom all the time. What with the constant visits to the bathroom and the measuring of urine it was a real drag. the hair loss is difficult. I too, shaved mine off as soon as it started to fall out. The loss of my eyelashes and eyebrows also upset me. But it is not forever. I had family send me costume wigs hats and scarves. I didn't wear them but it helped. Humor always helps. there is an up side to no hair. I could get ready faster and no legs to shave. My hair started to grow in in about 3 months. it was so super soft and I loved my chemo curls.
Chemo and my surgeries left me exhausted and I fatigued so easily. Somedays I felt like an ancient lady. I tried to be carefull not to confuse the exhaustion with depression. they often feel the same.
I was also frustrated because I couldn't concentrate enough to read or even watch a whole movie.
I was pretty naseaus the first round but it got better after that. my blood counts bottomed out, and I had additional stays in the hospital for slight fevers.They finally ended chemo after six months because my docs felt it would be unsafe to continue and I had hit the first goal they had set for my treatment.
All in all I had only one job to do. take care of myself and allow myself to get through each day.
Some things that helped were to make my hospital stays home like. My own clothes. I dressed everyday. I exercised on the stationary bike when I could. Played cards, learned to use facebook,had my favorite pillow and blanket. Made friends with the nurses and learned about their lives.
At home, I enjoyed my family and friends. My kids are older than yours. but they would flop on my bed and we would listen to music and talk. Your kids will like that too. I was not able to do all I would have liked, but slowing down and really being in each day was an incredible gift to myself and my children.
Now I am four years out, I have a full head of hair (no longer curly) and have to once again remind myself to take a deep breath and appreciate it.
Joined: Sep 2012
Linda,
saw your posts, that's great news. Let me ask you, I have never done this before, not big on talking about it, but for some reason I looked up fibromyxosarcoma and it linked to this. Is what you have the same thing? I have had it 3x in the past 18 years, all in the retroperitineum.
Just curious, like your attitude and glad to see you are doing well. All the ebst, God bless,
Tom