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Newly diagnosed with PEComa

  • By Soniapecoma · New reply 5:45 pm
  • Discussion in Newly diagnosed · 5 replies
  • Hello All. My name is Sonia. I am relatively new to the site and I am posting for the first time but have been reading all about PEComa for about 3 weeks. Let me tell you how it all came about. About ...

Some knowledge would help

  • By krstn59603 · Posted 5:26 am
  • Discussion in Emotional support · 0 replies
  • Hi, name is Kristine and I have recently been told that I have Epithelioid Sarcoma. I was hoping to get some facts from others that have it or know someone who has it or had it. About a year ago I noticed ...

newest update on chris

  • By researchingforbro · New reply yesterday at 9:13 pm
  • Discussion in Treatment · 7 replies
  • Hi All- Chris had a checkup and they did an unexpected MRI because he was feeling the pain at the original site again (where he has gotten the 2 infections). The Ifosfamide appears to have achieved stabilization ...

sts group reunion?

  • By sarcogal49 · New reply yesterday at 11:20 am
  • Discussion in Family and friends · 35 replies
  • There was talk a while back with lilalee and others about a face to face reunion this spring (is there still such a thing? ) in Philadelphia as I recall. Is that still in the works? I'm happy to help ...

Heaven gained another angel!

  • By MaryLou77 · New reply yesterday at 9:49 am
  • Journal · 17 replies
  • Hello everyone, it was a sad day April tenth as David passed away peacefully at home with his whole family bi his side. There was no pain and no suffering, his palliative doctor and nurse are extremely ...

Need some input

  • By LyndaG · Posted yesterday at 8:58 am
  • Journal · 0 replies
  • I have not posted for a while but have been following everyone. After 30 months with ned my high grade myxoid sarcoma returned on top of my bladder in the small bowel. It was acting like a low grade staying ...

Malignant pleura effusion

  • By MaryLou77 · New reply yesterday at 2:11 am
  • Journal · 16 replies
  • While David was in rehab recovering from his full leg amputation from sarcoma recurrence back in Dec they found a 6 cm tumour in the pleura of his lung along with several other small ones. He had no symptoms ...

Its official--sarcogal49 is 18 mo NED!

  • By sarcogal49 · New reply April 15, 2014
  • Discussion in Living with a soft tissue sarcoma · 28 replies
  • Appt with oncologist yesterday. Always I need to wait until I see it in writing being a nurse get worried did they misses something or mix up patients! She teases me about that but I always ask her if ...

"A wake-up call from a young e-patient: 'I need to be heard'”

  • By John2 · Posted April 15, 2014
  • Journal · 0 replies
  • From: John Novack, Communications Director, Inspire 4/15/14 Dear members, I am writing to share with you a new guest column in "Scope," the Stanford University School of Medicine's medical blog: "A wake-up ...

new/old tumor.

  • By jeanieweenie · New reply April 12, 2014
  • Journal · 13 replies
  • Hi, just posting i have another tumor just under my left bicep that is going to come out in May. I really think it has been there through the last shoulder surgery but they just did not look any farther....they ...

Undifferentiated Small Round Cell Sarcoma- Treatment Options?

  • By bears4230 · New reply April 10, 2014
  • Discussion in Treatment · 8 replies
  • Hi, My brother (43yr male) is battling re-curring undifferentiated small round cell sarcoma and I was hoping this support group could assist with some advice. During initial chemo to shrink tumors in ...

Biopsy of Soft Tissue Sarcoma - Safe?

  • By Jackievdb · New reply April 9, 2014
  • Discussion in Treatment · 13 replies
  • I have a lump on my thigh. I go to the Cleveland Clinic in a little over a week for further evaluation as my General Physician does not know if it is cancerous or not. From what I have read puncturing ...

Preventing Recurrence

  • By Oil_painter · New reply April 7, 2014
  • Discussion in Treatment · 6 replies
  • I just had surgery to remove a sarcoma from my inferior vena cava. During the process, my right kidney was removed as well as a portion of my right adrenal gland. The surgery was very successful. Apparently ...

First post and just wanted some help and advice please

  • By rach6976 · New reply April 7, 2014
  • Discussion in Symptoms · 16 replies
  • Hi, not sure where to start really and not even sure if sts is the right group to be posting in as I'm not even sure if that's what I have, but here goes... About 8 years ago I found a hard lump about ...


  • By Hutching2013 · New reply March 31, 2014
  • Journal · 8 replies
  • Ok so I'm new to this site and would like some information or insight on my newly diagnosis of malignant sarcoma of the soft tissue. I have copied below my letter to an Oncologist I will be receiving ...

Newest results

  • By mommy29100 · New reply March 31, 2014
  • Journal · 8 replies
  • My latest scan results show no tumor growth or new growth. I have now been on Afinitor for 3 years. Praise to God for my continued stability. I am so thankful to be well enough to enjoy my time vacationing ...

Help! Drowning here...

  • By IloveTV · New reply March 28, 2014
  • Discussion in Emotional support · 8 replies
  • HI, my name is Sarah and I am a 33 year old mum of 3 (under 5). At the start of last month I was "diagnosed" with a retroperitoneal mass. It was picked up during a CT scan for something else, totally ...

Spindle Cell Sarcoma

  • By smd1954 · New reply March 25, 2014
  • Journal · 1 reply
  • It has been almost a year since my diagnosis. I have had 2 surgeries, 38 radiation treatments and 4 rounds of intense chemo therapy which included the "Red Devil" chemo drug combined with another one ...

has anyone not have rapamune work but Afinitor does

  • By pburgbill · New reply March 24, 2014
  • Discussion in Treatment · 9 replies
  • Rapamune of course is not working on my wife. They started infused Chemo. It just started so we have no idea. The Dr. said this PEComa tumor is a monster and growing fast. It grew another 1/2 inch since ...

Nearing the end of this sarcoma journey

  • By MaryLou77 · New reply March 23, 2014
  • Journal · 25 replies
  • David's lungs are failing him. He has battled this cancer with incredible strength and courage and has taught many people how to make the best of what hand you've been given in life. His left lung is ...

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