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Thread: Osteosarcoma diagnosed at age of 29.

  1. #1
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    Osteosarcoma diagnosed at age of 29.

    Hello all,

    My name is Andy and I was diagnosed with Osteosarcoma this year. Since bone cancer usually happens to children so I've decided to post in the Childhood Cancers Forum (even though I am already 29). This is what I have experienced so far:

    9/18/2010:
    Went bike riding and low sided on my bike. Shattered my left femur (yes, shattered, not broken). I was rushed to the hospital and had surgery. Fixed with titanium rod and pins. I had follow-ups and everything seemed to be recovering on track.
    My parents were worried that my bone would not heal right, so they listened to the doctor's recommendation and purchased EXOGEN Ultrasound Bone Healing System to aid my recovering time.

    12/2010:
    Went back to the hospital for follow-up checkup and doctor noticed my femur is starting to lose density around the knee area (on the inner side). The doctor said my injury was too severe so it could happen. He told me to put more pressure on my left leg when I walk to stimulate the bone growth (since I was walking with 2 crutches).

    1/2011:
    Went back for routine checkup and the x-ray photo still shows the bone losing density. Doctor said need to pay more attention to it and might need bone graft if necessary.

    2/2011:
    Another routine checkup and the x-ray photo is showing the bone losing density still. The doctor said to drop a crutch and see if walking with more pressure on the leg would help. And need to start looking into the bone graft option.

    3/2011:
    Routine checkup still shows my left femur losing density so the doctor said I need to discuss with my family to have another surgery to do bone graft. (throughout this whole time, I was in pain around my left knee area. The pain also gets worse during night time which does not allow me to sleep. At the time, I didn't know these were the symptoms of Osteosarcoma.)

    4/2011:
    My parents were already thinking something might be wrong so they brought me to see another doctor for a second opinion. Once the doctor saw my x-ray photos, he said my situation is very serious and referred me to another doctor. So I went to see that doctor within a week's time. When he saw my x-ray photos, he rushed me to do all the diagnostics. So I was diagnosed with Osteosarcoma after the Ultrasound biopsy, but it has not spread to my lungs.

    5/2011:
    I started my chemotherapy.

    7/2011:
    Time for surgery. To doctor gave me 2 options:
    1. Amputation (the doctor explained since my affected area is big, they pretty much have to amputate my entire left leg even to the hip). The doctor said I will need to walk to crutches for the rest of my life as well, but chance of recurrence is around 5%.
    2. Limb-salvage. great risk on the surgery table and also chance of recurrence is 20% and above.

    I decided to gamble and chose limb-salvage surgery. The doctor replaced my knee with artificial joint and also replaced a huge portion of my left femur (about 35cm long) with donor's bone. But the doctor said the tumor removal was very successful and cleanly removed. However, the chance of recurrence is still 20% and above.

    8/2011:
    It has been a month since my surgery and the doctor told me their diagnostic result on the tumor. The tumor necrosis rate was at 60% (which is how they rate the effectiveness of the chemotherapy on the tumor). But they also compared the results from MRI and PET Scan which they said the tumor was controlled quite well by the chemotherapy. Therefore, they decided to stay with the same chemo drugs.

    So far this is what I have experienced and I am still in chemotherapy. Since the surgery is over, I just have to continue with the rest of the treatment and hope the cancer does not come back. But so far from what I have found, it seems like Osteosarcoma always comes back (even for the long-term survival patients). This is definitely one tough cancer!!

    I was wondering, are there ways to share photos on this forum?
    Last edited by YoYoCome; 09-07-2011 at 08:37 AM.

  2. #2
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    Andy, i am a 43 year old who has the almost identical cancer which was diagnosed 9 years ago. I had the limb sparing surgery and the chemo as well. I had nodules removed in my lungs on 2 occasions and participated in a trial study program at Dana farber in Boston. I have been cancer free for @4 years. Keep your head up bud. Joe

  3. #3
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    Quote Originally Posted by JoeyI View Post
    Andy, i am a 43 year old who has the almost identical cancer which was diagnosed 9 years ago. I had the limb sparing surgery and the chemo as well. I had nodules removed in my lungs on 2 occasions and participated in a trial study program at Dana farber in Boston. I have been cancer free for @4 years. Keep your head up bud. Joe
    Hello Joe! Thank you very much for the encouragement! It's good to hear that everything has been going well for you! I am still going through my chemotherapy and I will should be done with the treatment in about 6 months. Things seem okay so far and I will definitely keep my head up!

    BTW, Merry Christmas and Happy New Year to everyone!

  4. #4
    Administrator Top User Kermica's Avatar
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    Good for you, Andy, I wish you all good things in your fight! Best wishes of the Season to you, as well. I just noticed your question about pictures and the answer is that pictures are not allowed to be posted to the site. This is for the protection of all members as I am sure you can imagine that some of them could be quite disturbing if we had an open policy. I hope you understand and coninued good luck with your treatments.

    Good health,

    kermica
    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 63
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
    Significant progression detected in PET scan - December 2012
    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
    June 2014 - started 2 year maintenance Rituxin, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.

    Remember the Rules!

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    Hello Kermica,

    Thanks for the reply. I totally understand how some pictures would be very disturbing. Thanks for explaining the forum policies. So far I still have 4 more chemo drugs to go and then I'll be done. Then the rest is to follow up and check for recurrences. The last check ups were 2 weeks ago and things look normal. Thanks for all the support! I just noticed that my thread got 500+ views and to those who have read and have not replied, if you're a cancer patient or are here for support, just remember, don't be down! No matter what comes in the future, you're never alone!

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    I will be going back to the hospital for my last round of chemo and then I will need to do follow-ups every 3 months to check if there is recurrence. Things went smooth throughout the entire chemo session (pretty much lasted a year). Now the real test begins. Hope there won't be recurrence. Thank you all for reading my thread! Wish me luck!

    I will continue to update my status once in a while.

  7. #7
    Administrator Top User Kermica's Avatar
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    Andy, I am very glad to hear that your chemo sessions were uneventful and that you are almost to the point of having completed them. Good for you! We here all share your hope regarding recurrance but read again what joeyl said above and take heart from his experience, I am confident that you will go the same way.

    For now, are they telling you that you are NED (No Evidence of Disease)? That is the first big milestone andd your quarterly checks will be just to confim that status. Good luck with everything, Andy, I am glad that this part of the journey is nearly over for you.

    Good health,

    kermica
    When the world says, "Give up," Hope whispers, "Try it one more time."
    ~Author Unknown

    Age 63
    Follicular lymphoma diagnosed August 08, Stage 1
    2 cycles (20 treatments each) localized radiation to tumor sites. Remission confirmed July 09
    Restaged to Stage 3 May 2010
    Recurrence confirmed May 2010 - Watch and Wait commenced - multiple scans with minimal progression.
    Cutaneous Squamous Cell Carcinoma diagnosed September 2012. Mohs surgical excision 09/2012. Successful, clean edges all around.
    Significant progression detected in PET scan - December 2012
    Biopsy to check for transformation 1/18/2013 - negative for that but full of lymphoma, of course.
    July 2013 - Rescan due to progression shows one tumor (among many) very suspect for transformation, another biopsy 8/12/13.
    August 2013 - No evidence of transformation, 6 courses of B+R commence 8/29 due to "extensive, systemic disease".
    February 2014 - Diagnostic PET scan states: Negative PET scan. Previous noted hypermetabolic cervical, axillary, iliac and inguinal lymphadenopathy has resolved. Doctor confirms full remission.
    June 2014 - started 2 year maintenance Rituxin, 1 infusion every 3 months. Doctor confirms lump under right arm are "suspicious" for recurrent disease, deferring scans for now.

    Remember the Rules!

  8. #8
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    Quote Originally Posted by Kermica View Post
    Andy, I am very glad to hear that your chemo sessions were uneventful and that you are almost to the point of having completed them. Good for you! We here all share your hope regarding recurrance but read again what joeyl said above and take heart from his experience, I am confident that you will go the same way.

    For now, are they telling you that you are NED (No Evidence of Disease)? That is the first big milestone andd your quarterly checks will be just to confim that status. Good luck with everything, Andy, I am glad that this part of the journey is nearly over for you.

    Good health,

    kermica
    Hello Kermica,

    For now they are saying I am NED. I have recently done chest CT Scan, full body bone scan, MRI, and PET Scan. All test results show no sign of recurrence. I just finished with my last round of chemo and are back at home now recovering (resting and making sure my blood cells levels are all back to normal).

    Thank you very much for your support! I will definitely keep a positive attitude!

  9. #9
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    I have Osteosarcoma to and I'm from China.I'm 16 years oid .

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    I'm sorry to hear that you are having to deal with something so harsh at such a young age... I wish and hope for the best for you!

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    Quote Originally Posted by 小狮子 View Post
    I have Osteosarcoma to and I'm from China.I'm 16 years oid .
    Be strong and handle whatever comes at you! It's been over 2 years since I was diagnosed with Osteosarcoma. We just have to fight it and live your life!

    Keep your head up!

  12. #12
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    Here is an update:

    At the end of May 2013, my MRI result showed a tumor in my left thigh. The doctor met with me and told me that this is recurrence so he schedule a surgery for me to remove the tumor. I had the surgery on 7/3/2013 and it went smooth. The tumor was taken out, but the doctor had to remove my artery and nerve because the tumor wrapped around them.

    Now I am recovering from the surgery and is doing well. Although my leg function is damaged, but this is not the end. I will keep fighting and handle whatever comes in the future.

  13. #13
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    Update on my status:

    I was done with my chemo treatment around end of January 2014. But I was diagnosed with recurrence on the left thigh by the end of April 2014.

    I had a surgery to take out the recurrence tumors and now I am on my chemo treatment again. So far so good and nothing out of the norm.

    This will be a long battle and just got to keep on fighting!

 
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