Cancer Survivors Network

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.

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?

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

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 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 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!

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..

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.

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

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

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!

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!

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

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

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

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 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.

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.

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

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!!