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Pattie R
Posts: 3
Joined: Mar 2017

Leiomyosarcoma of the Inferior Vena Cava

I am a 71 yr old female in excellent health, felt good and looked GREAT (so I was told constantly, LOL) until March 2017 when I was diagnosed with Stage 2 Leiomyosarcoma in the retroperitonal area. The tumor was 5.5 cm when it was found. The tumor had invaded and blocked the Inferior Vena Cava, which compromised my right kidney. My body miraculously created collateral veins to continue to function as required. After a biopsy confirmed the diagnosis of LMS I was referred to University of Miami Sylvester Comprehensive Cancer Treatment Center, which has Sarcoma specialists.

Leanne H
Posts: 1
Joined: Sep 2017

Can you help me find a treatment for metastasised osteosarcoma

Our 18 year old son was diagnosed with osteosarcoma in his leg in late November 2015. After 8 months of chemo and limb-saving surgery to remove the tumour, we were told his chances of survival were very good. Sadly, in July this year a small spot was detected on his lung one week from being 12 months since his last round of chemo. During lung surgery to remove the spot the surgeon found two other microscopic spots in the same lung which had not shown on any CT or PET scans. He removed all 3 spots which proved to be malignant.

Posts: 1
Joined: Sep 2017

High grade rhabdomyosarcoma

Hello all. I am a male in his 60s that just got diagnosed with high grade rhabdomyosarcoma. It originated in my lower right leg just below my knee. My tumor is greater than five centimeters. There is very little information in regard to this cancer in adults. I start chemo (MAID) soon and the doctors have indicated my leg will need to be amputated after chemo and then I must go through more chemo.

Posts: 1
Joined: Aug 2017

Need advise please


I had an ultrasound and a ct scan two weeks ago and doctors think I have a fairly large

large retroperitoneal liposarcoma and are suggesting a pt scan and biobsy as next steps

steps. I then did some reading about this cancer and have some thoughts. If you 

are familiar with this subject may I have your feedback please.

My thoughts right now:

1. I have read that a biobsy may not be a good idea because it will "seed" more

cancer cells.

2. Will a pt scan not add more (bad) radiation?

Posts: 1
Joined: Jun 2017

Sarcoma of the Inner Ear


In 2014 I had my first surgery for sarcoma in my inner right ear.  I had two surgeries six months apart to remove, repair and rebuild my ear.  I have no hearing in the ear now but we are hoping to try bi-cross hearing aids in an effort to give me sounds in that ear.

Posts: 1
Joined: Aug 2016

Stage 4 Myxiod Liposarcoma for 11 years

I was on the trial with Docorubicin and Olaratumab. Doctors were convinced I was receiving the real thing. I started Feb 2016. Drs. feel I had a response because my scans decreased in size on the 5 nodules they were following in my lungs by 12%. I started taking the Olaratumab by itself in July 2016. I was just kicked out of the trial because those 5 nodules increased by 22% from the low point. Not sure where to go from here. 

Posts: 41
Joined: Sep 2016

Private Message Spam

Hello everyone,

Thank you to all of you who have alerted us to the PM spamming from earlier today. I apologize for the inconvenience. While we do have securities in place, we are not always able to catch all spam, and we are trying to figure out how this one got around our system. If you received a message from jegac1 please do respond to it or share any of your information.

Jegac1 has now been blocked from the CSN site.

Again, I am sorry for the inconvenience. Please continue to report any email spammers or questionable behavior you see.

Best regards,

Posts: 1
Joined: Jan 2017

65F w/ASSO looking for alternatives to Chemo

I am a 65 year old women, currently with ASSO(adenosarcoma w/sarcomatous overgrowth).

I had a hysterectomy in the February of 2016 after tumors were discovered in my uterus.

In October of 2016 several new nodules were discovered in my abdomen. They decided against biopsying the cyst in fear of puncturing them and spreading the sarcoma.


Posts: 9
Joined: Dec 2016

Undiff Pleomorphic Sarcoma (thigh)

My husband was recently diagnosed with undifferentiated pleomorphic sarcoma. In brief, he had a tiny hard bump on his outer thigh that he just noticed one day. Then after about 4 months it became more noticeable and kind of painful. Within the next two months it really grew fast, was obviously larger, tender to touch and very painful. He had surgery to remove a misdiagnosed lipoma. Biopsy resulted in undifferentiated pleomorphic sarcoma with positive margins.

Recee driver
Posts: 1
Joined: Dec 2016

Chemo or no chemo

i was diagnosed with stage 2 LMS 5 weeks ago. Surgery was 4 weeks ago. Large mass was removed. But they also found a small nodule on the stomach wall. It was not connected to the large mass. Both were removed with clean margins. Dilemma is s how did the nodule get there?  From touching the large mass or from metastasized cells in my blood. Doctors are split on chemo or just monitoring. Anyone else had this dilemma?  Any advice?  Thanks


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