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<40 yr old Leiomyomasarcoma Patients
This sucker is hard enough to come by. But most patients seem to be older by the time its found or diagnosed. I'm looking to hear from people who dont fall into the "research study norms" for LMS. I was 31 when my tumor was found. It measured 10cm on a chest CT. It wasn't until after surgery 4 months later that they…
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Adult Rhabdomyosarcoma
I have recently been diagnosed with Rhabdomyosarcoma. I am 22 years old and I have a nine month old son. I have had one surgery and am awaiting a second. Does anyone know of any hospital that specifically deals with Rhabdomyosarcoma? Im having trouble finding a Doctor who has seen it before. Also I would love to talk to…
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Undifferentiated Pleomorphic Sarcoma
My husband was diagnosed in early 2021. He had a large fast growing mass on his upper arm. Radiation and brachytherapy brought the mass down to size for his surgery. The surgeon removed the mass but had to go back in a day later to get clear margins. Wound vac for a couple months then infection set in and they removed the…
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extraskeletal osteosarcoma
Anybody know anybody who's had extraskeletal osteosarcoma? My wife's been diagnosed with this, had the first surgery in May 2015 to clean out the sarcoma that was removed from her butt (discovered in a visit to dermotology), then had a follow up surgery in June 2016 to remove one that showed up in her lung. We've got…
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Rhabdomyosarcoma Survivors
I am particulary interested in finding those who have survived rhabdo since the 70's or before. Thank You..northstar1@core.com
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Anyone with hemagiopericytoma?
My mom has hemangiopericytoma. She has it in her heart (they think-can't do an MRI to tell for sure). She has two mets in her lungs and a few in her liver. She's tried Gemcitabine & Docetoxal, Doxil and now is starting temador & avastin. I've joined a hemagiopericytoma group on Yahoo groups but am curious if there are…
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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…
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Just diagnosed with DFSP FS
Hi all, I’m hoping that other people with DFSP still check in to this site as I’d love to make some connections. a bit about me - I’m a 46 year old woman living in Adelaide, Australia and four weeks ago I was diagnosed with DFSP. Mine is the fibrosarcoma type which I think means a tumour of higher malignancy. like many of…
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Has anyone had any experience taking the cancer drug "Votrient"
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Metastatic Sarcomatoid Carcinoma
Last October, my 24 year old son-in-law was having a tooth issue that wasn’t getting better after several trips to the dentist. After pulling the tooth and a biopsy of the area, it was confirmed cancer. Fast forward 3 weeks to having emergency surgery to remove a softball size tumor that basically exploded from the area…
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Neurofibromatosis (NF1) - Turned into cancer
Just curious if anyone experienced cancer from (NF1); Sarcoma.
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Dermatofibrosarcoma protuberans (DFSP)
Has anyone had or no someone that has/had this type of sarcoma? I know it is very rare, but I am having a very hard time understanding what to do. I was diagnosed in November and immediately scheduled for surgery to remove this from my arm. The surgeon only spent about 10 minutes with me prior - and just kept telling me…
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Clear Cell Sarcoma
My 19 year old brother was diagnosed with clear cell sarcoma earlier this week. I am trying to connect with others who have this same condition.
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Is Radiation enough for proper treatment?
My dad was diagnosed with Tumor in his Colon in 2018. For which he had surgery and then was advised 12 cycles of chemotherapy which he completed. Then an year later he had this mass growing somewhere near bowel loops again for which he got biospy which came out negative. Then in 2022, he got PET-CT Scan done and found that…
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Caretaker, struggling and depressed.
All, forgive me if this is not the right way to post in this forum. I found the instructions vague at best, but please point me in the right direction if I'm lost. My wife was diagnosed with synovial sarcoma in her leg about 2 years ago. After the worst 24 months of our lives with aggressive chemotherapy, radiation, and…
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Ewing Sarcoma support
I just feel like I need some support going through everything that I I'm in the WORST part of my life and I need support
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Ewing Sarcoma tumor on left kidney
I was diagnosed with your ink sarcoma around two years ago I am 31 now and I had a lot of complications with my surgery that turned into more surgeries and me being transported and waking up days later with not only a bigger cut then was supposed to but also cut up on each leg on each side that were left open for two weeks…
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Sarcoma associated with trauma or injury to limb?
My 63 year old husband was diagnosed with Myxofibrosarcoma in May. He had very small tumors removed from the calf of his right leg in 2013 and 2016. Both times the pathology diagnosis was benign giant cell tumor. In April this year, a tumor came back at the same site on his calf. His surgeon sent him to a local oncologist,…
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Mixoid Chondrosarcoma (or neuronal)
Hello. I live in NY. My partner was diagnosed with a high grade sarcoma in his right thigh which was removed 'en mass'. The tumor was about 4cm long within a capsule. He had no symptoms and this tumor was detected because of an MRI due to an auto accident. The tumor was removed by a neurosurgeon. The medical oncologist…
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Leiomyosarcoma - Seeking Information
Three days ago my husband was diagnosed with Leiomyosarcoma. I'm just now getting over the shock that my 39 year old husband has cancer for the second time (he had childhood cancer when he was 13 years old.) I'm been brought to my knees several times by what I have found on the internet. We have two young children, 2 and…
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Clear Cell Renal Sarcoma
I just got my pathology report shows Clear Cell Renal Sarcoma. Is there a thing call that.
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Synovial Sarcoma--Starting Gleevec
My husband was diagnosed with synovial sarcoma in Aug. 2003. He is 37 years old, and the primary tumor was in his thigh, but it had already metastasized to both lungs. He has endured 4 different chemo regimines for the metastases with no success (all the standards . . .adriamycin, ifosfamide, gemzar, etc. too many to…
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Fibrosarcoma
Is there anyone out there with my cancer...fibrosarcoma? I have never met another person with fibrosarcoma..if you are out there, what is your story, and how are you?
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To those who have or know alot about neurofibromatosis
Hello , My dad has neurofibromatosis 1 and also has been battling rectal cancer for the last three years since that time I have searched for info on neurofibromatosis and found some but not much . Now my dad has had a neurofibroma in his throat for the last 20 years . It causes no symptoms so it's never really been much of…
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Sarcoma Cancer
About six Mponths ago my husband had a Sarcoma Cancer in his right thigh. The doctors said chemo and Radation would not help him as much as them going in and taking it out. They did four surgies on him and finally got it they said it had not got to the bone yet real close but not to the bone. They removed the Gricilic…
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Votrient
My sister has soft tissue sarcoma. She begins 800mg of Votrient this week The cancer invaded her hip and tibea, causing the knuckle of the tibea to break off. A PET showed it also in her liver. Any Votrient experiences?
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Fibromyxoid Sarcoma
I had a lump they were "watching" for 6 years. I decided to just get it out and it was a fibronyxoid sarcoma under my right arm. I am currently doing radiation and then another surgery is to follow. The margins were not clear and because I was not put under...it was a local....everytime the numbing needle went into the…
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Lung Sarcoma
I was diagnosed in 11/05 with a primary tumor in my left lung. I am currently undergoing chemo to shrink the tumor for possible surgery. I have been told this is a very rare site for sarcoma and wonder if anyone has had any experience with this? It is rhabdomyosarcoma, sorry if I didn't spell that right, and usually kids…
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Husband diagnosed w/ Cardiac Angiosarcoma-41 yrs. old-anyone else.?
Hello, We live in Toronto, Canada. My husband just diagnosed and started chemo 2 weeks ago. He has had a hard Time and remained in hospital. Platelets went down to zero. The primary tumor is in the heart but also spread to His should crushing 3 bones. Having a rough time and would like to meet others with similar…
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Liposarcoma in abdominal area
I would love to chat with someone who grows cancerous fatty tumors that appear around the colon, small intestine and abdominal area. I've had 3 surgeries in 4 years with prognosis that more surgeries will come. No treatment will help only removal whenever they show up large enough. I haven't found anyone out there who has…