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Ewing Sarcoma

isabelle
Posts: 3
Joined: Mar 2001

I have a Ewing Sarcoma and am on Chemotherapy Treatment since early September 2000. Another 7 cycles of chemo are planned before I have to undergo radiation. I do not know what to expect from the radiation treatment. Does anyone have similar experience? Thanks for dropping me a note.

1mom
Posts: 2
Joined: Apr 2001

My son just finished four weeks of radiation for desmoplastic small round cell tumor of the abdomen, which is in the ewings sarcoma family of tumors. His also had elements of PNET. He was diagnosed 6/00, and had chemo to shrink his very large tumor, and surgery to remove the bulk of what was left.(soft ball size then) Origionally it was 19x21cm I think, and had 3 liters of malignant ascites as well that the tumor was producing. After surgery he still had small seeding throughout his abdomen. He had 5 or 3 day chemo's to start with, using 5 or 6 kinds. Then he had high dose chemo W/ stem cell transplant as a rescue. As for the radiation, the treatments themselves are not bad, but radiation to the abdomen and pelvis is very difficult, with much gastritis.His blood counts have also suffered, and is still recieving platelets, blood and GCSF. Where is your tumor located? How did you find it? 1mom

katy04
Posts: 3
Joined: Jan 2004

i am 17, and i have a free standing tumor in my chest cavity. i was in icu for 40 days on the respirator because the tumor had taken over my entire right lung and was pushing against my esouphogus and my stomach. i lost 70 pds. i go through 5 and 2 day chemos w/ 2 diffrent kinds. i had vincristin the first time but i had a allergic reaction and got naropathy in my feet... iit has to do w/ brain damage...if any one wants to talk email me... at katy04@artlover.com

tuke
Posts: 5
Joined: Feb 2004

You have been through SO VERY much - I am sorry to hear. My nephew has had 3 rounds of 3-day chemos and has been dehydrated, major thrush in his throat,etc. They are facing surgery - did you have surgery or are you facing surgery? Take care of yourself. What kind of art do you love :)

leposierrasp367
Posts: 4
Joined: Feb 2012

I am 30 years old and in remission from Ewing's Sarcoma in my left tibia. Hope to get treatment from here.

- bowel cancer symptoms and bumps on vagina

Wandajp
Posts: 1
Joined: Feb 2012

My husband finished 7 months of chemo in Sept 2011 and has his abdominal CT tomorrow, the first since he has been off of chemo for 3 months. He had the sarcoma on his left thigh. He has done great but was in the hospital 3x during treatment due to low counts and fevers. He is back to working 12 hrs a day and has more energy then I do!
Hope you are doing well.

leposierrasp367
Posts: 4
Joined: Feb 2012
tuke
Posts: 5
Joined: Feb 2004

I am writing on behalf of my 15-yr-old nephew who has intraabdominal desmoplastic small round cell tumor. He was diagnosed in 12/03 and has already undergone 3 rounds of chemo.
They are attempting to harvest his stem cells now and are having trouble. My nephew's mouth and esophagus are raw. Wondering if my brother and his wife might be able to email you about your son's ordeal with this cancer. I am trying to help them discover any info that might be of help to them.
I think my email is automatically given to you, but if not it is mtklemmt@cox.net (this is my 1st time on CSN). Thank you very much.

jazer313
Posts: 8
Joined: Oct 2012

Hi,
It has been so long since your post, I hope your son survived his cancer.

Our journey started just two weeks ago, my son (almost 14) had a headaches for about a month, when he did not respond do headache medications his doctor ordered a head CT scan for Tuesday morning, one hour after the CT scan we were asked to go to the ER, an MRI was ordered for his head and spin, the MRI confirmed he has a tumor on the upper right side of his brain, it was not inside the brain but on the surface of the brain, the next day he had a brain surgery and the tumor was removed, the Neurosurgeon called me and told me the results of the pathology report confirmed it is a PNET, yesterday the oncologist told us it is PNET Ewings Sarcoma! my son dos not have any pain in his body, the only thing he had was the headache, it is hard for me to go a head and agree with the oncologist assessment.

What do you think.

Thank you,
Emad

kmarostica
Posts: 1
Joined: Jul 2001

I had the protocol 4 years ago. I'd be happy to answer any questions you have. Let me say I hope your protocol does not require Adrymiacin right before the radiation treatments.I have been told they have taken it out since I had the treatment. I'm Kelly and will check this message

isabelle
Posts: 3
Joined: Mar 2001

Hi Kelly
Thanks for answering my question. After one year my last chemo is coming up next week. Radiation will follow. Adrymiacin has not been part of my treatment. Mine was based on the cornerstones Vincristin, Adriblastin, Holoxan, Etophopos. I heard that there is a new radiation method, the protontherapy. Do you know anything about it? can Ewing be treated with this new method. Would it be more effective (Ewing in sacrum) than conventional radiation treatment? And I have one more question; is there still a risk of metastasis once the treatment has been successufl or is the "only" risk a recurrence of the tumor after completing a successful chemo and radiation treatment? Thanks for your reply.
Best regards

Isabelel

myraf
Posts: 3
Joined: Dec 2001

I had a ewing sarcoma and I did receive Adrymiacin. Luckily it was one of the first drugs I recevied but just wanted ti mention they still use that drug for treatment

franm2655
Posts: 2
Joined: Dec 2012

Yes, they do still use this drug in Chemo. I have PNET in the thoracic spine and it was used as part of my regiment in Chemo. Anyone have any problems as a result of having this drug used? Thank you

Chanteuz's picture
Chanteuz
Posts: 7
Joined: Aug 2012

Hi! I'm really interested in what you have to say about your experience. I'm going into a long chemo after surgery starting 8/13 and i'm fearful.... I guess I'll lose my hair. What's the standard set of drugs for Ewings? I'm getting that and what can I expect? Please fill me in! i'm 58 years old and my Ewings must have been sitting dormant for a long long time... this is a rare case and I'm no spring chicken! Thanks

Nina W
Posts: 3
Joined: Sep 2012

Hi
Im 49 years old and finished treatment for Ewings sarcoma in my right humerus 12 months ago, I had 14 rounds of extensive chemotherapy. Im in Australia and dont know anyone else who has had a Ewings. I had my humerus bone removed, I had radiation as well.

Nina

Nina W
Posts: 3
Joined: Sep 2012

Hi
Im 49 years old and finished treatment for Ewings sarcoma in my right humerus 12 months ago, I had 14 rounds of extensive chemotherapy. Im in Australia and dont know anyone else who has had a Ewings. I had my humerus bone removed, I had radiation as well.

Nina

myraf
Posts: 3
Joined: Dec 2001

I recently finished my treatments for ewing sarcoma. I would love to talk. Please contact me.
myraf

tuke
Posts: 5
Joined: Feb 2004

I am attempting to find info on behalf of my nephew who has intraabdominal desmoplastic small round center tumor related to Ewing Sarcoma. Did you have surgery? If so, where. Would love to chat with you.

rose_hadds's picture
rose_hadds
Posts: 34
Joined: Jul 2010

I just finished treatments as well....4 rounds chemo,surgery and 35 rads. How about you? Where was your ewings

Debbie66
Posts: 2
Joined: Aug 2010

Please let me know how your treatments were. My niece was diagnosed recently with ewing sarcoma. She has it in her hip and in her lungs. She is 13. I am nervous for her. I live in Colorado and she lives in Michigan. I feel hopeless here. I need some kind of help understanding this cancer. Please help.

rose_hadds's picture
rose_hadds
Posts: 34
Joined: Jul 2010

I just finished 35 rad treatments for Ewings after 4 rounds of chemo. Mine was primary base skull soft tissue with mets to my lungs. I am finished treatments. The radiation was long but not a lot of pain. I had some reddness after 2 weeks and dry skin with reddness at the end of 35. It felt like a sunburn. I had rads to the head so I lost my taste and have constant dry mouth. Radiation makes you tired and even 2 mths later I am tired. If it works it is worth it. My prognosis is good so I am glad I did it all. Good luck and prayers are with you.

Debbie66
Posts: 2
Joined: Aug 2010

My niece was just diagnosed with Ewing Sarcoma. It is located in her hip and in her lungs. I am wondering if you know of anyone with this type and would give me some type of hope. Katelyn is 13 years old.

danidewtwo
Posts: 2
Joined: Sep 2010

Hi

I am 6 months in remission from Ewing's Sarcoma in my left tibia. I was 21 years old when I was diagnosed. I have written a blog that may be helpful to your niece. Please check it out..http://danidewtwo.webs.com/

maoberst's picture
maoberst
Posts: 11
Joined: Oct 2012

Danidewtwo - how are you doing?  My daughter finished Ewing Sarcoma treament in Sept 2012.  She is still not walking yet as her limb salvage surgery was significant.  I wish youy the best and would love to hear from you!  Would love to know how you are doing!

Melissa

www.caringbridge.org/visit/emilyoberst

nemom4
Posts: 15
Joined: Mar 2010

Hi everybody. I am a month cancer free. Finished in June after 8 months if intense chemo, vincristine doxorubicin cyclophosphamide etoposide ifosfamide and the kidney protector mesna. I am a 25 year old mother of 4. If any one wants to talk you can email me at m_ammon6@yahoo.com.

bekki
Posts: 2
Joined: Jun 2005

well done nemom4 on your fantasic news, of being cancer free..
I was diagnosed with a pnet e/s in april 2000, it was in the duodenum, 9 (which is rare apparently) I had surgery to remove the fast growin tumour, and i to had the same chemo as you, and i can happily say i have been cancer free for nearly 11years now. i do have some after affects of the chemo. but nothin to serious thankfully.

jazer313
Posts: 8
Joined: Oct 2012

Hi,
Glad you are cancer free.

Our journey started just two weeks ago, my son (almost 14) had a headaches for about a month, when he did not respond do headache medications his doctor ordered a head CT scan for Tuesday morning, one hour after the CT scan we were asked to go to the ER, an MRI was ordered for his head and spin, the MRI confirmed he has a tumor on the upper right side of his brain, it was not inside the brain but on the surface of the brain, the next day he had a brain surgery and the tumor was removed, the Neurosurgeon called me and told me the results of the pathology report confirmed it is a PNET, yesterday the oncologist told us it is PNET Ewings Sarcoma! my son dos not have any pain in his body, the only thing he had was the headache, it is hard for me to go a head and agree with the oncologist assessment.

What do you think.

Thank you,
Emad

bruno63
Posts: 1
Joined: Apr 2011

Hi Nemom4 , my daugther 16 has been diagnosed with the Ewing sarcoma. She had surgery ribs 10 and 11 removed, we had several hospitals involved and some said she need radiations some said she did not. In december 2010 after the MRI, PET CT this was the result:

1. Left side flank/torso primary tumor initially 10 cm
2. Left lung nodule 1 cm (per PET)
3. Left pleural effusion, (-) for CA (cancer)
4. Right lunk 2 small (2 mm each) nodule, (-) for PET > unclear if CA
5. T12 (+) in PET
6. 2 spots in pelvis (right SIJ and left iliac wing)
7. Sternum (+) in bone scan > MRI/ CT (-) >> not CA but inflammatory changes
AFTER CHEMOTHERAPY X 12 WEEKS > RESTAGING
1. Left lung nodules resolved
2. T12 no residual activity
3. R lung 2 spots , no residual activity
4. primary tumor 3.5 cm in size > appears to be ONLY area of disease
>>> removed with surgery
5. Right lung 2 spots: Right upper > no longer visible
Right lower > still visible 2 mm > likely NOT cancerours
6. Right SIJ and Left illiac wing (-)

Now she is in the 3rd week of consolidation with no radiation.
Did you have radiation? Anyone could put ant input.

Thanks All

nemom4
Posts: 15
Joined: Mar 2010

Hi Bruno, so Sorry about your daughter! I had one tumor on my 9th rib. They removed 8,9&10. I had 14 rounds of chemo. My tumor was 7 cm in diameter. They had mentioned radiation but the cancer responded very well with chemo so they felt there was no need for it. Sorry I couldn't be more help. I'm here if you want to talk though. I did find that it helped me to be able to talk to others about everything I was going through. Will be praying for her and your family!

shelia55
Posts: 1
Joined: May 2007

Bruno- So sorry to hear about your daughter, but what a great response to her first line chemo.

As you have already found out, there seems to be no clear answers to anything with this disease - only that it is horrible!

You have probably already made your decision. We were faced with the same problem with my adult son who had PNET of the kidney, dozens of mets to the lungs. We got 5 opinions from hospitals and specialists - 2 for radation and 3 against due the damage it would do to his adult lungs (the younger you are the better your lungs are able to withstand radiation). It appears that it was the right decision for him. But all any of us can do is weigh our options and go with what we think is the best for our loved ones. Hope it has worked out for you guys.

Just for all of you out there - Jason was diagnosed with Stage 4 PNET of the kidney, multiple mets to both lungs in Jan 3, 2007. He had every bad marker you could have, size, location, etc. We live in Memphis. We went to MD Anderson and was told that they could only try pallative treatment, that he had a few months. Well, we came home to Memphis, found a doctor truly touched by God, who in turn put us in touch with a specialist at the University of Michigan, who in turn put us in touch with St. Jude (even though he was an adult, they did give "unoffical" advice on treatment protocol). So we ended right back here in Memphis with our dr. at the West Clinic. After the kidney was removed and two chemo treatments, Jason has been clear or NED since May of 2007!. He just passed his 4 1/2 year scan last week. Miracles do happen!!!

mummymary
Posts: 3
Joined: Dec 2011

Sheila55, my daughter who is 19 was diagnosed 6 weeks ago with ewing sarcoma. Primary tumour in left scapula with mets to skull,spine and pelvis. She has had two rounds of chemo and is going in next week for her 3rd. She had a bad reaction to the first round and went into a coma but pulled through shocking everybody. I pray every day to St.Jude as my family and I believe St.Jude has definitely helped . Please pray for my child. We live in N.Ireland and we are just in shock with the whole thing. My daughter is a survivor and fighter and six weeks ago she could not even walk. Now she is driving, eating chatting joining in with her brothers and sister and she is going to win this fight and be a walking miracle. I will pray that Jason continues to get stronger and healthier every day.x
Mary

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