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Some tips from CSN
Welcome to the CSN! Below are some tips to help you get started following and posting on the boards. You can follow your preferred discussion board to get notifications of new topics and comments. To follow a board, navigate to your preferred board and then select the bell at the top, followed by your notification…
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Looking for LMS Stage IV long term survivors
Please share your story. What has worked best for you? Have you tried alternative treatment methods? I am hearing about things from Ivermectin & Fenben, certain vitamins and teas. What has worked best for metastatic in lungs? I personally don’t know anything about them and have not tried any of them. I’m told that I cannot…
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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…
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LMS- AGGRESSIVE RECURRENCE
Hi, brave and wonderful people! So happy to hear there are people who have managed to survive this extremely aggressive type of cancer. I want to send a big hug and thank you to you all, for your optimist and strength and may you stay strong and positive in order to win this battle. Reading your lines, i felt enouraged to…
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My battle through Ewing Sarcoma
I'm new to the Cancer Survivor board and am a Ewing Sarcoma Fighter/Survivor. I have one month of chemo therapy to go and am hoping to dive into making a short film about my journey. I have recently started a blog and also have begun mentoring some of the newer Sarcoma peers I have met through my hospital and through…
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Adult Ewing's Sarcoma Diagnosis
Hi, A close member of my family has been diagnosed with Ewing's Sarcoma recently. He has a tumor in his left pelvic region and a great deal of pain. He is a 38 yr old male. He is married and has two adorable boys. He is currently receiving the standard 5 drug chemo treatment (Vincristine, Adriamycin, Cyclophosphamie,…
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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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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.
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MPNST Sarcoma
Im new to this. I would like some thoughts on mpnst sarcoma.
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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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Chondro sarcoma
I had a skull based chondrosarcoma surgically removed from behind my right ear in 1990. Another was diagnosed, growing in the same place, in 2000. Surgical removal is not an option second time around. Although only slow growing I have had two bleeds in the last 18 months, one into surrounding brain tissue, the other inside…
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possible soft tissue sarcoma
hi guys, i hope it is appropriate for me to post here not having been diagnosed yet. i visited my primary care doctor on tuesday, we discussed my symptoms and she reviewed my ultrasound of my abdominal tumor i had done at hospital and she is referring me to a surgeon to remove the tumor and send it to pathology. i am just…
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myxoid liposarcoma
Hello Guys, After surgical removal of tumor 6x5x5cm (high grade) on right thigh with all clear margins from the lab report, necessary to go for radiation/chemo or.. Please suggest if anyone of you have gone through similar issue..
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1974 - rhabdo - I’m 52 now..
testicle and spermatic cord removed at 2 1/2 and then on to Sick Kids in Toronto - radical lapo-lymph removal - then Vac regiment for 2 years - about 46% of my cohorts were gone by 5/6 - the chemo regime left me infertile-ruined my teeth - direct injection by needle collapsed my arm veins - they moved to my feet lol - they…
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Adjuvant chemo for Synovial Sarcoma
Hello all, Im 29 and had a high grade large tumor (11cm) in my right thigh that was synovial sarcoma. I did 3 rounds of chemo (dox and fofs), then 5 weeks of radiation and then got the tumor removed. The chemo caused tissue death of the tumor and the radiation further reduced it. I’m now a couple months post surgery and…
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Synovial Sarcoma survivors wanted! Would love to hear stories!
Hello Survivors! My name is Scarlett, I am 19 years old and I live in San Diego, California. This is a long one, but I would really appreciate you reading it! Here is some background...last February I was diagnosed with synovial sarcoma. It was in my left forearm. I don't remember the approx. dimensions, but I remember…
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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.
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Intamal Sarcoma
My husband was diagnosed with Intamal Sarcoma - which is a soft tissue sarcoma of the blood vessels surrounding the lungs, 2 years ago. This is a very rare form of sarcoma and I was wondering if there is anyone who knows about this kind of sarcoma or who unfortunaely is going through it. Plus, due to the radition and…
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Bilateral Metastatic Intimal Sarcoma of Pulmonary Vessels (Lungs)
Good Day - seeking anyone's experience in dealing with the above condition which my husband was newly diagnosed with in South Africa - Very rare - currently undergoing AIM chem but has not slowed the growth
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We are looking for clinics for 10 months old boy with rhabdomyosarcoma cancer
Hello to everyone! I am a volunteer. We are looking for clinics for 10 months old lovely boy Svyatoslav with rhabdomyosarcoma cancer. I will be so grateful to everyone who provides us the list of clinics over the world with effective/experimental technics of treatment or give us the advise. The boy has gone through the…
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sarcom kaposi
I would like to know if there is an effective treatment for Kaposi's sarcoma Existing on the legs in the form of a wound.
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Sarcoma in the chest
Hi Does Anyone have any information about sarcoma in the chest? My tumor is in the pectoral muscle.
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Myxofibrosarcoma
Hello I'm new here. Sitting at home recovering from surgery to remove a lump from my hip. It came back to be high grade myxofibrosarcoma. I'm 41 and worried, not going to lie. Anyone else know what my family and I have ahead of us or going through it?
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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…
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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
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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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…