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MPNST (Malignant pheriphial Nerve sheath tumor
Looking for people who have MPNST due to NF1(Neurofibromatosis type 1) I’m 23 and my cancerous tumor is back after surgery radiation and chemo. Had surgery before we knew it was cancerous in 2021 and dr had gotten it all. Did radiation and 5 weeks of chemo 5days a week 8-9hrs a day in2022. It’s 2023 and it’s back and was…
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Rhabdomyosarcoma alveolar head and neck
Hello this year I got diagnosed with stage 3 RMS in my sinuse cavity and right nostril. I’m 30 years old is there any one else here having the same. I need someone that can understand me when I talk I need hope
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Rhabdomyosarcoma
Rhabdomyosarcoma, lets talk about this ugly CANCER!! In recovery since 01/2019.
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leiomyoma sarcoma stage 4
I have been diagnosed with stage 4 leiomyoma sarcoma. It is just outside the stomach and has spread to the liver. I have just completed chemotherapy and a recent scan shows it is stable. I have looked at complementary treatments in particular dietary changes (eg no red meat and dairy). I was wondering if there is anyone…
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Synovial Sarcoma in France
Hello I'm french I registered on this forum because in France there is no on Sarcomas My wife (36 old) was diagnosed in September 2022 with a grade 2 synovial sarcoma, she has a 9cm tumor in her calf The protocol is Chimio > Radiotherapy > Operation I wanted to know if other people have gone through this cancer, so I can…
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Rhabdomyosarcoma relapse
Hi all.my little girl is 4 and has rhabdo. Relapsed after girst treatment due to cancer growing in her lungs after spine neck and lungs treated with radiotherapy too.not aloud anymore radio or first line treatment so she is on VIR course similiar to VIT. My questions are mainly about nigella sativa and anybody looked into…
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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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LONG TERM SARCOMA SURVIVORS WANTED
I'd like to hear the stories of some long term survivors. Please tell me your story. I'd like to be able to see that this isn't only a dismal disease. Thanks.
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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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Looking for survivor stories for recurrent De-differentiated retroperitoneal liposarcoma
Hi there, I’m 29 and had several liposarcoma masses removed earlier this year. They were de-differentiated (though some were well-differentiated), and were surgically removed before we knew it was cancer. At my 6 month scan, I just found out I have a recurrence. I am heading towards chemo or radiation before another…
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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…