Anyone out there?

Author: Interstate | August 1st, 2012
Interstate's picture

Hi there,

Would love to hear from anyone affected by Ewings Sarcoma. Struggling to find people in a similar situation to bounce things off

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stargazer's picture

Re: Anyone out there?

Posted by stargazer - 28 Dec 2012 - 20:43

Hi! March 2012 my then 23 year old son was diagnosed with Ewings Sarcoma.His was in the spine in the T3 area.He had 12 chemo cycles and 31 days of radiation. The only pain was in the top right shoulder.

Interstate's picture

Re: Anyone out there?

Posted by Interstate - 29 Dec 2012 - 01:35

Hi, how is your son now? Is his treatment finished?

stargazer's picture

Re: Anyone out there?

Posted by stargazer - 31 Dec 2012 - 07:49

Sorry it meant to read 2011. Yes thank you my son was given the all clear on Jan 24th of this year. But bad luck hit us again with my husband now with bowel metastied to the liver. I hope your doing okay.If your getting your treatment at peter mac in melbourne they are outstanding esepecially ward 9. Myy son has 3 monthly checkups and scans and always visits his ward.Peter Mac became our second home as my son couldnt walk for quiet a few months.Whats your treatment plan, do you need an operation at all. Youll be fine believe.

Interstate's picture

Re: Anyone out there?

Posted by Interstate - 5 Jan 2013 - 19:23

Hi, glad to hear your son is doing well but sorry to hear about your husband. Surgery is all finished and my daughter is really mobile again now which is great considering such a big surgery. She is being treated in Perth at Sir Charles Gardiner who have been fantastic. 5 more months of chemo still to go but she is doing really well. Good luck to you and your family, keep in touch :Innocent

SueI's picture

Re: Anyone out there?

Posted by SueI - 6 Aug 2012 - 14:35

Oops ! forgot to mention another site www.cancerforum.org.au then search 'sarcoma'. This info refers to both bone and soft tissue sarcoma and is Aussie !!!

SueI's picture

Re: Anyone out there?

Posted by SueI - 6 Aug 2012 - 14:28

I know how difficult is it to find info about sarcomas that is Australian, then you have approx. 70 subtypes. Most info and forums are American. I'm 18 months into my journey with sarcoma (high grade soft tissue sarcoma - pleomorphic epithelioid myxiod giant cell) 2 tumors 4 surgeries followed by 6 week of radiation. We were told that Chemo is not affective for my type of sarcoma but I think is has good results with Ewings?? What path of treatment are you on. There's an American site, sarcomaalliance.org which is visited by people world wide (mostly American) discussing surgeries, treatments, side affects and results. Hope you are under the care of a sarcoma specialist to give you the info and answers needed, these's not many around.

SILLY's picture

Re: Anyone out there?

Posted by SILLY - 2 Aug 2012 - 22:38

I googled this cancer as I had not heard of it . As it is rare you may find someone on a site called the Rare Cancer Alliance ,an on-line support group . I hope you find someone here though, as it means finding another Australian .

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