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Sarcoma

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Rhabdomyosarcoma
Rhabdomyosarcoma, lets talk about this ugly CANCER!! In recovery since 01/2019.
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
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…
<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…
Leiomyosarcoma
Looking for people that have beat this rare cancer and what worked for treament etc. My sister is 30yrs old and had surgery to remove a large mass on her right ovary thinking it was ovarian cancer sarcoma. Pathology came back yesterday and it is leiomyosarcoma. She was able to keep her left ovary and uterus which seems odd…
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.
Leiomyosarcoma Surgeon
Hello Team, Can someone give me the information on surgeons that are crazy enough to do the surgery? Some doctors won't even try and I'm seeing ppl with tumors larger than a football having them removed. I need real surgeons' names, California preferably but I will go anywhere.
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…
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…
Diarrhea with Votrient (Pazopanib)
In August, 2011, I bumped my elbow on the countertop, immediately causing intense pain and a lump to arise. After the lump and pain failed to subside with time, I sought medical treatment. The lump was initially diagnosed as bursitis and drainage was unsuccessfully attempted, due to the thick viscosity of the fluid. In…
7 year remission from Undifferentiated pleomorphic sarcoma
I had a tumor in just below my waist line, very aggressive. Had chemo six 21 day cycles 7 days in hospital for infusion. Then radiation and finally surgery at MD Anderson, Houston. I thank a praise God for the doctors and medical staff.
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…
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…
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…
Rhabdomyosarcoma Survivors
I am particulary interested in finding those who have survived rhabdo since the 70's or before. Thank You..northstar1@core.com
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…
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…
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…
Has anyone had any experience taking the cancer drug "Votrient"
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…
Neurofibromatosis (NF1) - Turned into cancer
Just curious if anyone experienced cancer from (NF1); Sarcoma.
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…
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.
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…
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…
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
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…
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,…
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…
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…

Sarcoma

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