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Welcome to the Sarcoma board!

Hey everyone!

I'm Jason, an 8 year undifferentiated soft tissue sarcoma survivor. I'm really looking forward to meeting fellow sarcoma survivors here on the Stupid Cancer Forums. Feel free to share your stories, questions and comments about sarcomas.

Jason
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  • 66 Comments sorted by Votes Date Added
  • Hey guys,

    Having just been diagnosed with leiomyosarcoma (LMS) 2 weeks ago, it's good to find at least an online place with other folks in my age range and general cancer type... What a crazy life adjustment. In our chemo info session, my nurse recommended I talk to someone whose had chemotherapy to understand a little more about what I'm in for, so I called up the mother of a college friend who I remembered having fought cancer while we were in school. The thing I keep going back to from our conversation was her reflection that, "You know, even when I was in the midst of treatment myself, it seemed like it wasn't really happening to me." That's the thing, I think. This just can't be me. I'm still trying to see the person I always have been in this suddenly diseased body.

    Since my tumor is in my left femur, I'm on crutches. People constantly ask what I did, assuming I've suffered some sports med strain or a tumble down the stairs. I've switched to the non-descript response of "a series of unfortunate events." Really, is it necessary to drop the "c-bomb" on a random acquaintance? I made the mistake of explaining the tumor thing to the nurse taking my blood a week ago at a different doctor's office than normal, which was when I decided that it was better to flat out lie (or at least be extremely vague) while I still have hair and can pass as healthy, rather than become simply a cancer patient to be pitied and comforted. How does a person who has cancer remain a person with individual traits and talents and desires, capable of normal conversation?

    Sorry for the depressing post - I had my port placed today, so I'm sore and finding the harsh reality of this situation to be very real tonight.

    -jenn.
  • Hello Jason, im only 3 months post treatment for stage 3 Alveolar Rhabdomyosarcoma that grew from my right sinus cavity into my right eye socket. They found 2 malignant lymph nodes on the right side of my neck under my jaw. Lucky for me it was centralized and had not metastasized even though diagnosis took a week and a half. I really shouldve visited this site sooner. I started to feel really off mentally and decided to look for websites to help me cope. What kind of treatment did you receive? I had signed up for a clinical trial where I received Vincristine, Dactinomycin, Cyclophosphamide, Irinotecan and 28 radiation treatments.
  • Welcome aboard, Kevin!

    I had vincristine, doxorubicin, ifosfamide, vp-16, probably about 28 radiation treatments, but I don't remember the dose, and a stem cell transplant. I also had a very large tumor that had not metastasized. On MRIs it looked like it could have been a rhabdo, but it was nothing like it when they got some of it out.

    I'm really glad you like our group! Unfortunately, we don't have any in-person events in Hawaii yet, but one day! In the meantime, enjoy the forums, and don't be a stranger on the sarcoma board.
  • I just finished treatment for synovial sarcoma. I got my port taken out today!! I'm still in physical therapy after surgery, but everything is looking pretty good...
  • Welcome! One of the cancers they thought my tumor might be was synovial, but it turned out to not be that one either. Congratulations on finishing treatment! I dealt with a lot of physical issues after my treatment, so I know how it feels to be in physical therapy for a while. Hope you make many improvements there!
  • I was diagnosed in September with undifferentiated soft tissue sarcoma in my right leg. I had surgery to remove the tumor and I have my first set of follow up scans tomorrow. Hopefully everything is still OK and I can be normal for another few months. Glad to have found y'all (I'm from TX). There aren't a whole lot of sarcoma patients out there and I haven't been able to find any survivor groups so far. I can't tell you how glad I am to see y'all here!
  • summoore;1826 said:
    I was diagnosed in September with undifferentiated soft tissue sarcoma in my right leg. I had surgery to remove the tumor and I have my first set of follow up scans tomorrow. Hopefully everything is still OK and I can be normal for another few months. Glad to have found y'all (I'm from TX). There aren't a whole lot of sarcoma patients out there and I haven't been able to find any survivor groups so far. I can't tell you how glad I am to see y'all here!

    Welcome aboard! I also had an undifferentiated sarcoma, but in my right pelvis. I had chemo, radiation and bone marrow transplant, with some minor surgery thrown in for good measure, but I still have a large residual mass left. There are not a lot of sarcoma patients, but many migrate to internet sites. Were you treated in pediatrics, or adult oncology?
  • I'm in with the "old" people :) Thankfully, I live really close to a major cancer center that has a dedicated sarcoma center. Who knew? My uncle used to work there as an orthopedic surgeon and during discussions with my doc, I found out that I was in what used to be his practice! I can't tell you how nice it was to be able to talk to someone with that kind of expertise on a personal level. I sure wish I would have known he specialized in sarcomas when I was diagnosed. I thought he only did bone stuff!
  • I wasn't sure, a lot of sarcoma patients in their 20s wind up in pediatrics. At my hospital, orthopedic oncology kind of crosses over and treats patients in both categories. We have a great sarcoma center here at UF. I visited MD Anderson out in Texas for an evaluation following my treatments here. We were trying to resolve a question about whether or not to have a certain surgery (wound up not having it).
  • Hello everyone =)
    My daughter Lauren has undifferentiated soft tissue sarcoma. Summoore, you are so right about the lack of information. I was happy to have found Jason, someone who's story related so closely to Lauren's. (He was a guest on one of the Stupid Cancer shows) At this point, Lauren isn't using conventional therapy any longer. The first six months of her treatment consisted of doxorubicin, ifosfamide and 31 pelvic radiation treatments. Since we decided to not remove the tumor, she was switched to a new protocol and off of the clinical trial. After four rounds of carboplatin & VP-16, she was declared stable. She had her last round of chemo in September 2010 and in October, was switched over to 100% natural holistic "protocol" and she is doing really really well. The mets are gone, but some activity still remains in the primary tumor (located at the bottom of her spinal chord). While I advocate more on the pediatric side of cancer, this site has really helped me as a caregiver and I've used it so much with my approaches to Lauren as she is a teenager who has lived through more than what some adults NEVER experience. There are NO sarcoma groups in my area, mostly support groups for older people (though they were extremely helpful in trying to help me locate a group for someone her age). I guess in some ways that is a good thing. It makes me feel weird to wish there was a group knowing that my wish meant that more ppl had to have cancer. IDK. I'm kinda weird like that. Lauren is in the "I'd just like to forget this ever happened" phase right now so any sort of therapy is out of the question. We'll see how things are in a few months :)

    Oh, I forgot to say Happy Monday after the Super Bowl!
  • Glad to have been turned on to the site from @summoore today while waiting for an MRI. I was diagnosed Synovial Sarcoma in August right as things were getting good in my life. Stupid cancer has taken the job I worked for and has created other burdens. I am living it a day at a time. I am enduring treatments well about to finish chemo and start radiation. I am nervous about surgery after, I don't want to lose my foot but I guess its better than losing my life.
  • HEY!!! I responded to your post in introductions! I thought that was you!! You're right that your foot isn't worth your life, but it sucks that the decision even exists. Keep hanging in there. It's a lot of weight for any relationship, much less a new one, but it has to be better on the other side...right???
  • summoore;1872 said:
    HEY!!! I responded to your post in introductions! I thought that was you!! You're right that your foot isn't worth your life, but it sucks that the decision even exists. Keep hanging in there. It's a lot of weight for any relationship, much less a new one, but it has to be better on the other side...right???

    when i read you not only have a husband but two kids i felt like a wuss. you are so much more focused than i am, at least i got that when we met, you seemed so calm, going at your MRI with a fighting attittude.
    It better be better on the other side! Once you readjust we will look back at this and think how small a time in our lives this was.
  • BAHAHA! There's nothing calm about me. I firmly believe in "fake it til you make it". I'm trying to convince myself (and everyone else for that matter) that if I don't act like its a big deal, it won't be a big deal. The good news is that I went to see Dr Moon today and all of my scans came back fine! I'm not so naive to think that since my first follow up was good it will be all good from now on, but I feel like I have a little breathing room. At least for 6 months...then it begins again...
    So ready to close this chapter!!!
  • Hi all. I am a fellow sarcoma survivor and am currently in treatment. I agree with some of the other posts about the lack of information and decisive treatment plans for sarcomas. I have a great team of doctors at the University of Chicago who are starting with a new wave of experimental treatments for sarcomas. I currently am under going six weeks of radiation treatments and am unsure on what my next steps will be.

    The one thing that bothers me so much about my cancer is that I always feel like I will be waiting around for it to come back. This is my second round of treatment in 6 months and I feel like it will never end.

    Love and support,

    Jillian
  • Hi Jillian,

    Welcome to the sarcoma board! Sorry to hear about your recurrance. If it helps, I've been sarcoma-free for 8 years now, so it is possible to get past it (though it definitely seems impossible at times!). I also had a soft-tissue sarcoma. Mine was undifferentiated and located in my pelvis. I had radiation, chemo and a stem cell transplant over the course of about 9 months for my treatments. Are you being treated with an adult service, or with pediatrics?
  • Hello,

    My name is Liam and I am a fellow sarcoma survivor :)

    The type of sarcoma I had was chondrosarcoma, which is a cartilage-based tumor. It was in my right femur. I was lucky to not have any chemo or radiotherapy, just an surgical operation to remove the tumour. I was also very lucky that here in Oxford we have a first class hospital with world class surgeons/nurses.

    That was in 2006, this September, is the supposed MAGICAL 5 years. I booked my next check up on the exact date that I had my first operation on all that time ago, am looking forward to celebrating on that day with my specialist nurse Helen and a glass of champagne.

    I like to take a few moments each day to remind myself why I love living so much, my cancer experience altered my previous state of mind (in more than one sense, thanks, morphine!).

    I hope to contribute what I can here, a brief look around has led me to think this is a quite excellent place.

    See you later! :)
  • Welcome! We're glad you found us! I've heard of chondrosarcoma in the past, but I've never personally encountered anyone with it in my cancer travels. I remember how excited I was for my big 5 year mark. It's definitely an exciting time for any survivor. Our sarcoma forum is growing quickly, so hopefully we'll get to have some great discussions in the future.
  • I know the feeling. I just got through my first check up (4 months) and I was so worried. Everything came back clear, but I'm already getting anxious about my next one. I'm looking forward to the "magical" 5 yr mark. Maybe I'll be able to breathe a little easier.

    Glad you're here!
  • Jason,

    Thanks for the welcome and the devotion to these forums! Congraulations on being cancer free for 8 years! I am on an adult service and just hit my half way point of radiation today!
  • Glad to see that you have come out on the other end of your experience with such a great outlook. very inspirational :)
  • Hi everyone,

    I had osteogenic sarcoma at 23-24 and I was in the pediatric ward. That is because it was a pediatric sarcoma, there is also an adult sarcoma, which, if I understand correctly, are different types of cells. At first it was horribly sad, all these little ones dealing with horrible things. Finally, I began to watch how well they handled it and I got involved in welcoming new parents, new children, and was designated as a helper for all the teenagers who were just plain angry. It was my job to get them involved. So being there helped me tremediously. I used to teach so I loved the kids.

    Jason, Thank you for starting a sarcoma posting, you do not see much on sarcoma. My Osteosarcoma was 7 by 14 centimeters when they found it. So I had to have a bone transplant and half my muscle and other crap in my right leg taken out.

    I did not have the normal osteo protocol so just wondering if anyone was treated with the Ewing's protocal.
  • My protocol was described, at the time, as "a Ewing's protocol", but I have since learned that it was really it's own protocol for undifferentiated sarcomas. I think the drugs were the same, but the timeline may have been different. I know a lot of Ewing's patients get 14 chemo treatments or something like that, and I had 7.

    The drugs I had were:
    Vincristine
    Doxorubicin
    Ifosfamide
    VP-16 (last chemo treatment only)

    I also had a really large tumor. 15 centimeters on one side, but I don't remember the rest. I know when I finished treatment, the residual mass was still 8x5x3 cm. The residual was never actually removed, because of major sacral nerve involvement. I was treated in pediatrics since I was 17 at the time, but I knew of other sarcoma patients up to about 25 that were on the floor at the same time I was. It seems like a lot of sarcoma survivors turn up in our group. I suspect this is because there really is so little information out there. We're glad to have everyone here, and I'm glad people are getting something out of the forum! If you guys want more information, there was a whole episode of the Stupid Cancer Show dedicated to sarcomas. Feel free to look it up on itunes or on thewebsite.
  • My 15 y/o son was diagnosed in July 2010 with High Grade Undifferentiated Sarcoma of his Left Pelvic area. It was the size of a football. He is currently in treatment at St. Jude Children's Research Hospital in Memphis, Tn. He has been undergoing chemotherapy treatment for Ewings Sarcoma Protocol. He had surgery in October and they removed everything they could see or touch. Then he had radiation for 7 weeks. As of right now there are no signs or symptoms of cancer what so ever, but we are just waiting and still doing chemotherapy. The chemotherapy is expected to end in September, but we have gotten some set backs from low counts during radiation. I am like you cherrichiodo it is hard to find anything about this kind of cancer. Two months ago I saw where you Jason where doing the radio show. Summoore I am with you. I am so glad to have found this Sarcoma Board. Kevin and Janette so glad you are all here also. I just wished we where all here under different circumstances.
    My son's name is andrew. His story can be read at http://www.caringbridge.org/visit/andrewbj. I wish you all the very best.
  • I am so sorry to you all. From lack of sleep I did not see the other two pages. I am so glad to to see you all here also, but like I said earlier I wished it was under different circumstances. I am still trying to figure this all out it is so new to me. I am not really sure how to move around on this board yet, but I am slowly figuring it out. Believe you me I am so so GRATEFUL to be here and to see you all. Thank you! Thank you! Thank you!
  • Getting down to the end and freaking out a bit

    HI everyone!
    So glad to have found this sarcoma board- my 9yr old daughter Olivia was diagnosed with undifferentiated embryonal sarcoma of the liver on Labor Day 2010. She is currently on treatment 12 of 14 with a Ewings protocol. Which by the way is vicious! Cant imagine how she stands upright most days, let alone play Just Dance on the wii til she sweats! Her cancer is rare, and we hear that CONSTANTLY. It's been hard to realize that rare does not necessarily mean worse. We have fantastic doctors and are close to CHildren's Hospital of Phildelphia. For that we are so grateful.

    I am so pleased to hear all the survivor stories; it is encouraging as she winds down with her treatments to think that there are so many survivors ~ it is uplifting really. The panic sets in often as we think, will every day of our lives be consumed with thoguhts that her cancer will come back? Hope not.

    Olivia is doing SO GREAT. Her entire tumor (pretty big) was resected and the majority of her liver remains. The tumor ruptured, hence such harsh chemo. She had no other areas affected by the cancer. Pray that she too will be a survivor and join the ranks of all you wonderful young men and women.
    Peace and love, Sloane
    www.caringbridge.org/visit/oliviaradcliffe
  • Damnitttt! I got news yesterday that I will lose my foot from my sarcoma. I don't know what to do, I know I will have the surgery but I am very fearful of adapting to this. I just want myself back, I want to be happy again. Sorry if I am being a downer today but I am at a loss. I had such high hopes I wouldn't need surgery at all because I am walking fine now but those stupid positive margins are still there and amputation is the best option. I am scared guys very scared and tired of this stupid cancer.
  • Matt Hernandez;2222 said:
    Damnitttt! I got news yesterday that I will lose my foot from my sarcoma.

    Well I don't have sarcoma but I wanted to post here anyway to tell you that is scary and a big change in life- no need to apologize for being a downer- I'm wishing you the best Matt, and I'm sorry things have gotten so crappy for you, I hope they get better!
  • Hi I have bee na synovial sarcoma survivor since May 2010. I have not taken my port out yet. Honestly I haven't even though about it.
  • Hi Matt,


    August must be a prolific month for us huh? My amputation due to Synovial Sarcoma was August 21, 2009. I was 28. I have been in remission since May 2010. Yes burdens were created also, I know longer work where I used to. But I see it as a blessing to start my life over focusing more on my self and my life than those who surrounded it. I did alot of sacrificing for others, and I learned it was my turn to live. I did not go through radiation though. MY tumor was like a golf ball on my ankle. And I was diagnosed stage 4. 3 out of 4 doctors scratched their heads and was not keen in looking me in the eye. But here I am! Since my second chance at life I find that I have more of a will to truly enjoy this second chance at life. I am not going to lie, the mental and physical difficulties were there. As it has only been a year since I had a prosthesis its still new, I learn something new everyday. But I can jog a half a mile ( considering I am tall and nearly 300 pounds that's a feat). I walk 7iles every morning, slowly whittling down the pounds. I've been horseback riding, surfing, hiking, and even adaptive skateboarding. I am looking forward to climbing with First Descents this spring. A 30th birthday present I will enjoy. You do mourn, because a piece of you, you've known your whole life. Something you can not imagine living without will cease to exist. But I was in so much pain, I couldn't even sleep at night before amputation. To have that pain gone. To be able to do things I thought I can never do. I don't regret a thing. Amputation was a result of a saved life. A battle scar if you will. Embrace it. MY boyfriend now fiancee did. He proposed to me while I was in the rehab facility after surgery. People around you will see your resolve and respond to it. Keep surviving :) and keep in touch on my page.

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