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Sarcoma

Neurofibrosarcoma - Long Term Survival
Hope and Faith - SARCOMA ... a diagnosis that has many long names and a wide range of prognosis and outcomes. It's a very scary place to be ... fear and the uncertainty of it all. When our daughter was diagnosed with Neurfibrosarcoma at the age of 21 in 1998, we thought the worst having been given straight up answers ....…
Endimetrial Sarcoma
1994 Total Hysterectomy,Lymph removal,fatty Pad everything, Radiation 8weeks, Now 20 yrs later it's back, wrapped around my Kidney? Wth? Doctor says it's a rare cancer, & again, rare that it returned? Help! I'm so scared this time....
life after wipple surgerey
i just finished my whipple surgerey 5 weeks ago and any one done whipple pleae tell me your life after whipple
Soft Tissue Sarcoma in Leg, Starting Chemo
I'm 23, female, diagnosed with large aggressive soft tissue sarcoma behind knee/upper calf with bony involvement in tibia. About to start chemo regime of Ifosfamide & Mesna and Adria. If anyone has had similar experience please contact.
Private Message Spam
Hello everyone, Some of you know that we have had previous problems with a particularly tenacious scammer named sarah, and unfortunately she has struck again. While we have security measures in place, we can't prevent all spam. We are currently working on measures to try and block this kind of private message spamming. If…
Help! I have Spindle Cell Sarcoma & I need information
I had Hodgkin's Lymphoma in '08. I had ABVD chemo & 20 radiation treatments. I've been healthy and had clean scans ever since. I found a lump in my neck back in October that was doing a disappearing and reappearing act for months. I was able to get in for it to be tested and was told last week this lump in my neck is…
limited range of motion after tumor removal?
Hi All. I was dx'd with a MFH soft tissue sarcoma earlier this year and it was removed in May after many rounds of chemo and radiation. As my tumor grew on the back of my leg, my leg became severely bent and I became unable to use the leg and walk. Now that the tumor has been removed, even 2 months later, my ability to…
Ewings Sarcoma
My brother is 22 years old diagosed in December with metastasis Ewings Sarcoma in his right pelvis (bone and soft tissue) and bilateral lungs. He has completed 6 rounds of VIDE and 1 round of VIA. After completing the VIDE in April his scans showed he had two remaining tumors in his lungs. They decided to remove his lower…
Help
What are the top sarcoma centers in the West? Can they help someone with Stage 4?
Votrient, malignant fibrous histiocytoma
.My mom was diagnosed with Malignant Fibrous Histiocytoma, a 14x9 cm tumor was removed and 6 months later she had aggressive mets to lungs. ALL the literature states that her level has extremely poor prognosis. Luckily chemo actually worked to shrink the lung tumors and put her in remission (Jan 2014). She was started on…
All CSN members are invited!
It’s finally happening! We are happy to announce that as early as tonight, a new Chat application is being launched on CSN. It is NOT Java-based and it DOES support members using mobile devices. To access chat, you must be a CSN member and logged on. Once logged on, all you have to do is click chat in your left navigation…
Spam Emails
We have been made aware of another round of spam emails being sent to users. While we try to have security in place to handle such emails, we cannot always catch them all. If you have received an email asking for money, please do not respond to the email or the private email address that was given by the sender. Please…
Uiooi
What I want to say to you right now can be shocking, but believe me when I say that I would otherwise not bother you with it if I didn't think that it really matters. Once, as a result of different factors, I was mistakenly diagnosed with Sarcoma. At that time, I was also suffering from a broken hand and osteoporosis and…
planned maintenance on CSN this morning
Planned maintenance will be done on CSN this morning between 5:00 and 8:00 Eastern Time. There may be one or more outages during this time. We apologize for the inconvenience. Greta
Osteosacroma
My 18 year old son Justin has Osteosarcoma. His first two chemo treatments are completed. Cistplatin and Adriamycin and Methotrexate. He is doing pretty well so far. Has 2 more months of chemo until his surgery. The doctor wants to do an above knee amputation. It is in his right leg just below his knee on the tibia. If…
FIBROMYXOID SARCOMA...radiation or not????
I have been diagnosed with low grade fibromyxoid sarcoma in my left thigh. It has been there for 16 years and is very large (6 inches). Because of its size (I assume) one specialist wants to do radiation prior to removal. The other specialist says that radiation prior to removal may turn low grade to high grade and just…
Fibromyxoid Sarcoma
My name's John. I'm 25, and last week I was told that the large lump that has been on my thigh for years is a low grade fibromyxoid sarcoma. What led up to this discovery was a combination of an MRI and an incision biopsy. I've since also had a CT scan on my chest and found that it has not metastasized to my lungs. My…
lieomyoscaroma
Hi, first time posting - Felt the need to advise anyone with lieomyoscaroma of my experiences. This is my third Reoccurrence – anyone in the surrounding area of Virginia with this or any cancer should see my oncologist. Dr. Niefeld – he’s the best. He is the reason I’m a three time survivor!!!!
Synovial Sarcoma
Just turned 40 and diagnosed with a synovial sarcoma. Have gone through 4 cycles of chemo, radical resection of the tumor was done and am told went well. I start radiation for 5-6 weeks to take care of anything that may have been left. Still very confused I was told I had a 80-85% chance of a cure am told now that there is…
Embroynal Rhabdomyosarcoma Pelvic Region
I have had a hard time finding information and/or families going through this type & location of Rhabdomyosarcoma. I was hoping to hear back from people affected by this type & location. My son is stage III and the doctors have no idea where the tumor originated from they think maybe from behind the abdominal wall/cavity.…
high grade spindle cell sarcoma
Hi. I'm 21 years old and was diagnosed with a rare bone cancer called spindle call sarcoma in November of 2001. I went through 5 months of chemo then they had to reconstruct my leg when the tumor was removed. The tumor was in my upper tibia and most of the bone had to come out. It was replaced with a titanium rod along…
high grade spindle sarcoma
my boyfriend just had surgury for a hgs sarcoma on his right shoulder...have anyone ever had this we first went for chemo.. then the surgury now he is starting radiation in a week or so.. if anyone has been thru this please e-mail
Undifferentiated Embryonal Sarcoma Liver
I was diagnosed with Undifferentiated Embryonal Sarcoma of the Liver after a liver operation in November. They thought they were removing a very large cyst. I have since had an additional liver surgery and am slated to begin Chemo soon. Since this cancer is so rare in adults they have decided to use a Ewings protocol for…
CSN study FAQ
Please excuse the long post. A number of members have posed questions on the discussion boards or emailed me for more information about the CSN study that has been underway since November 2013. I thought it might be helpful to post the most common questions and my answers. What is the CSN survey? What is its purpose? The…
Looking for someone who has malignant giant cell tumor of soft parts (high grade)
I was just dignosed with sarcoma, it very rare, like one in 900 million get this. My surgery is on Tue Jan 7th.
Recent Amputee and Spindle Cell Sarcoma
In July 2011, I was diagnosed with Spindle Cell Sarcoma. It began with a small tumor in my left shin, which was biopsied and returned positive as a Hemangioma. The tumors continued to grown on my leg (going downward) and toes. After having two tumors biopsied, they came back (+) for Spindle Cell Sarcoma. Because there were…
Cystic Fibrohystic Tumors in the Lung
My husband at was diagnosed in March 0f 2012 with Cystic Fibrohystic Tumors of the Lung. He has hundred's of cyst's from tiny to the size of my fist throughout his lungs. Our Dr.at Duke says it is very rare and the cysts are created by sarcoma cancer in his lungs that has metastasized. They say that since it is in his…
Cystic Fibrohystic Tumors in the Lung
My husband at was diagnosed in March 0f 2012 with Cystic Fibrohystic Tumors of the Lung. He has hundred's of cyst's from tiny to the size of my fist throughout his lungs. Our Dr.at Duke says it is very rare and the cysts are created by sarcoma cancer in his lungs that has metastasized. They say that since it is in his…
Sarcoma of breast Rare lessthen 1% anyone else?
Newly dx with carcinosarcoma or sarcoma of breast. was told less then 1 % of breast Ca. anyone else? Treat as a sarcoma or as a breast Ca. I want to be aggressive since they tell me survival rate is only 40%, Of the studies I've found 5-7 years were tops. I can't accept that, I know there has to be survivors out there, I…
To Chemo or Not to Chemo
Hello Everyone, I've been patrolling the threads for a couple of weeks now and have really been uplifted by the great survival stories that I've read. I've recently entered into the world of sarcoma (leiomyosarcoma, to be exact) by virtue of my husband. He was recently diagnosed with leiomyosarcoma of the liver (which has…

Sarcoma

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