Osteosarcoma

jooody
jooody Member Posts: 4
edited March 2014 in Sarcoma #1
I am a 39 year old woman who was recently diagnosed with small cell surfaced based osteosarcoma in my left distal femur. I am being treated in Denver by Dr. Hinshaw with Adriamyacin pump for 3 days then Cysplatin fed through a cathedar line to the tumor site where they place high doses. I have gone through two rounds of chemo and expect a third before surgery. It is a rough chemo protocol. I am hoping to find other adult diagnosed osteosarcoma survivors that have gotten on the other side of this cancer. It seems like such a strange cancer for a woman my age to get. My doctor that is doing the surgery is Dr. Ross Wilkins at the Extremeties at Risk Clinic. He seems fairly certain that my leg can be saved. I would love any hopeful or helpful advice you can offer. Judy at walker5070@msn.com

Comments

  • Jennygirl84
    Jennygirl84 Member Posts: 5
    #2
    Hi Jooody!
    I am new to
    Hi Jooody!

    I am new to this discussion board but when I saw your post I knew I had to reply even though it was posted in April. My name is Jen and I am a survivor of osteosarcoma. I was 17 when I was diagnosed and it was in my left thigh in the soft tissue (grade 3). I recieved 6months of chemotherapy and 35 days of radiation at Sloan Kettering Hospital in NYC. The chemotherapies that I was treated with were extremely strong and harsh on my body but 7 years later I am here and able to write you about my experience. I was recieving 2 chemo's a day, 5 days a week and also treatments of radiation mixed in. When I first found out, I was told it was a very rare cancer and a strange one as well. I was being treated in the pediatric center of Sloan, I was also told that this type of cancer was mainly found in children and young adults hence the reason I was treated in that specific unit. I hope that somehow that within these last few months you are doing well with the treatments and if I can help in any other way please let me know. But either way, I wanted you to hear it from another survivor's mouth that you CAN BEAT THIS and YOU WILL! It's a long battle, but in the end it's always worth it. Please contact me if you ever need to talk or just share experiences.

    -Jenny
  • radiated1
    radiated1 Member Posts: 1
    #3
    Jennygirl84 said:

    Hi Jooody!
    I am new to
    Hi Jooody!

    I am new to this discussion board but when I saw your post I knew I had to reply even though it was posted in April. My name is Jen and I am a survivor of osteosarcoma. I was 17 when I was diagnosed and it was in my left thigh in the soft tissue (grade 3). I recieved 6months of chemotherapy and 35 days of radiation at Sloan Kettering Hospital in NYC. The chemotherapies that I was treated with were extremely strong and harsh on my body but 7 years later I am here and able to write you about my experience. I was recieving 2 chemo's a day, 5 days a week and also treatments of radiation mixed in. When I first found out, I was told it was a very rare cancer and a strange one as well. I was being treated in the pediatric center of Sloan, I was also told that this type of cancer was mainly found in children and young adults hence the reason I was treated in that specific unit. I hope that somehow that within these last few months you are doing well with the treatments and if I can help in any other way please let me know. But either way, I wanted you to hear it from another survivor's mouth that you CAN BEAT THIS and YOU WILL! It's a long battle, but in the end it's always worth it. Please contact me if you ever need to talk or just share experiences.

    -Jenny

    survivor but?
    Hi Jooody,
    At 38 I was diagnosed with osteosarcoma of the pelvis and like the others here I had drastic chemo before surgery and after and also 33 radiation treatments. I am now 53 and have had a pretty decent life until this past month. I have developed an intestinal blockage due to the radiation, they call it strictures and it is pretty bad, in fact the doctors really can't do much about this so I'm back where I was but looking for answers. I am hoping that todays radiation is a bit more precise than when I had it, 1996, but maybe you should ask your doctors about this side of it. As far as the cancer goes I am still free of it!!!!
    But as my doc says I survived the cancer but not it's treatment! Well we'll see about that!
    radiated1

    ps I forgot to say that at first diagnosis I was told I would lose my entire leg at the hip if the operation was successful. My oncologist found a surgeon who did this type of cancer surgery before and saved my leg. I did lose my hip and part of my pelvis but I could still walk on my own without the use of a cane or walker, not bad huh? Being 13 years later I am sure your doctors can save your leg and cure your cancer, just be careful about the side effects.
  • ange6
    ange6 Member Posts: 1
    #4
    hi to all
    my mum is 61 and was diagniosed with osteosycoma in her right foot she has has 4 lots of extreme chemo and is due to go into hospital to have her lower leg amputated tomorrow. My family and I have never had to deal with any thing like this before we are all devestated even though mum tries to put on a brave face for us. We lost our 18year old neice just last september and are still waiting on a result of the post mortem. she went into anaphalatic shock and passed away but we dont know what caused it. Then within the month mum was diagniosed with this cancer even though its very rare in adults. Im new to all this sort of heart ache and wish there was something i could do for her. It devestating to know she will loose her leg tomorrow but i know that if it gives he a chance of a longer life then i should be gratful. She has a few small daek patches on her lungs but we are still waiting to here if this is cancer also. I just wanted to tell my story. Thanks for listening.
  • jooody
    jooody Member Posts: 4
    #5
    Jennygirl84 said:

    Hi Jooody!
    I am new to
    Hi Jooody!

    I am new to this discussion board but when I saw your post I knew I had to reply even though it was posted in April. My name is Jen and I am a survivor of osteosarcoma. I was 17 when I was diagnosed and it was in my left thigh in the soft tissue (grade 3). I recieved 6months of chemotherapy and 35 days of radiation at Sloan Kettering Hospital in NYC. The chemotherapies that I was treated with were extremely strong and harsh on my body but 7 years later I am here and able to write you about my experience. I was recieving 2 chemo's a day, 5 days a week and also treatments of radiation mixed in. When I first found out, I was told it was a very rare cancer and a strange one as well. I was being treated in the pediatric center of Sloan, I was also told that this type of cancer was mainly found in children and young adults hence the reason I was treated in that specific unit. I hope that somehow that within these last few months you are doing well with the treatments and if I can help in any other way please let me know. But either way, I wanted you to hear it from another survivor's mouth that you CAN BEAT THIS and YOU WILL! It's a long battle, but in the end it's always worth it. Please contact me if you ever need to talk or just share experiences.

    -Jenny

    from your email to me in October
    Hi Jenny. I haven't been back on here since last year. Thank you for writing me. I am still here. I am still doing chemo but new drugs. I had my surgery and had the tumor removed. It wasn't dead from the chemo so I had to do 9 months of methotrexate and ifosfamide. I am nearing completion of the chemos. I am hoping to be event free of any return of this awfulness. I hear Sloan Kettering is a really good hospital. I am so glad that you are ok. What a horrible thing to have to go through in your teenage years. I wish you all the best! Judy
  • jooody
    jooody Member Posts: 4
    #6
    radiated1 said:

    survivor but?
    Hi Jooody,
    At 38 I was diagnosed with osteosarcoma of the pelvis and like the others here I had drastic chemo before surgery and after and also 33 radiation treatments. I am now 53 and have had a pretty decent life until this past month. I have developed an intestinal blockage due to the radiation, they call it strictures and it is pretty bad, in fact the doctors really can't do much about this so I'm back where I was but looking for answers. I am hoping that todays radiation is a bit more precise than when I had it, 1996, but maybe you should ask your doctors about this side of it. As far as the cancer goes I am still free of it!!!!
    But as my doc says I survived the cancer but not it's treatment! Well we'll see about that!
    radiated1

    ps I forgot to say that at first diagnosis I was told I would lose my entire leg at the hip if the operation was successful. My oncologist found a surgeon who did this type of cancer surgery before and saved my leg. I did lose my hip and part of my pelvis but I could still walk on my own without the use of a cane or walker, not bad huh? Being 13 years later I am sure your doctors can save your leg and cure your cancer, just be careful about the side effects.

    osteosarcoma
    Hi Thank you for writing me back. I haven't been on here in a long time. I appreicatie you sharing your story with me. I hope that in the last 6 months, your doctors have been able to treat your blockage and get things cleared up. I ended up having surgery in June. I was able to keep my leg and I got a new femur - well, it is new to me! My tumor was not dead at the time of surgery so I had to endure 9 more months of new chemotherapy, Ifosfamide and Methotrexate. I have small findings in my lungs but they haven't been biopsied so I don't know what will come of that. I am praying they will clear and I won't have to chase this cancer or have it chase me for the rest of my life. The doctors in Denver didn't suggest radiation for me. I am sorry that you are having side effects from it. It is wonderful to hear though that you were able to live event free of the cancer. I feel like most of the people I have met are just always trying to fend it off to get rid of it. As I near the end of my treatment, I hope it won't rare up on me again. I am sorry it has taken me so long to write. Take care, Judy
  • Kate7
    Kate7 Member Posts: 1
    #7
    jooody said:

    osteosarcoma
    Hi Thank you for writing me back. I haven't been on here in a long time. I appreicatie you sharing your story with me. I hope that in the last 6 months, your doctors have been able to treat your blockage and get things cleared up. I ended up having surgery in June. I was able to keep my leg and I got a new femur - well, it is new to me! My tumor was not dead at the time of surgery so I had to endure 9 more months of new chemotherapy, Ifosfamide and Methotrexate. I have small findings in my lungs but they haven't been biopsied so I don't know what will come of that. I am praying they will clear and I won't have to chase this cancer or have it chase me for the rest of my life. The doctors in Denver didn't suggest radiation for me. I am sorry that you are having side effects from it. It is wonderful to hear though that you were able to live event free of the cancer. I feel like most of the people I have met are just always trying to fend it off to get rid of it. As I near the end of my treatment, I hope it won't rare up on me again. I am sorry it has taken me so long to write. Take care, Judy

    I am new to this site
    I am the beginning of this journey with osteosarcoma and am being treated at Moffitt Cancer Center in Tampa, FL. I am 57 years old and have a Pilates studio where I actively taught until the recent event called cancer!
    My limb sparing surgery on my left femur resulted in partial loss of femur, my knee, some of my quadriceps, all of the ligament attachments to the knee and a bit of interior hamstring behind my knee. All was replaced with orthopedic ontological prosthesis on January 4th by Dr. Lesson. It was touch and go surgery and I almost lost my leg. Because I had previously broken my femur two years ago in an accident so my CT scans and MRI were virtually unreadable because of the plate and seven acres used to repair my injury.
    I am very happy with my recovery and walking well without crutches or a cane....way ahead of schedule.
    My next hurdle which I know will be the most difficult is the Chemotherapy I will begin at the beginning of March. There is no trace so far of spread to my lungs so the question is how many rounds must I do? The doctor is talking anywhere from one to four rounds and I am all for the treatment, I guess my big question is how do you know what is the amount based on no other signs of the cancer now my surgery is over?
    I just joined the group today and would love to be able to interact and get more insight from others experiences.
    I am also writing a blog that I started on December 21st the day of diagnosis before the actual surgery. It is called My Big Adventure and the site is
    Virgo-warrior.blogspot.com and will be ongoing for as long as I am actively in treatment, if you have any interest to check it out.
    Thanks for letting me introduce myself.....so to speak. Kate7

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