osteosarcoma tumor necrosis question

lmitchell99
lmitchell99 Member Posts: 7
edited March 2014 in Bone Cancers #1
My niece recently had limb resection surgery and the tumor was found to only be 30 percent necrotic after neoadjuvent chemotherapy. Has anyone had a poor response with necrosis and still beat this disease?

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  • osteosarcoma
    osteosarcoma Member Posts: 3
    #2
    Sorry to hear about your niece. My son had limb salvage surgery and he also had a 30 percent necrosis, but he relapsed just a few months later and will have his leg amputated next month. With osteosarcoma you never know..
  • rwebb
    rwebb Member Posts: 7
    #3
    Sorry to hear about your niece. I had 75% necrosis and am three years out from surgery with no problems so far. Good luck to your niece and be sure to remind her that there is life after this ordeal.
  • wan13
    wan13 Member Posts: 7
    #4
    My son has just finished neoadjuvent chemo and has been told that his tumour has actually increased in size. Did you niece's tumour shrink ?
    We have decided on below the knee amputatition as necrosis will not be known until the bone has been removed
    Willy@newtelsurf.com
  • lmitchell99
    lmitchell99 Member Posts: 7
    #5
    osteosarcoma said:

    Sorry to hear about your niece. My son had limb salvage surgery and he also had a 30 percent necrosis, but he relapsed just a few months later and will have his leg amputated next month. With osteosarcoma you never know..

    Did they change your son's chemo therapy after they discovered that he only had 30 percent necrosis? My niece was changed from methotrexate to ifosamide and etoposide and they assure us that her survival chances are the same. Did your son have total resection when the primary tumor was removed and does he have metastases? Thanks.
  • lmitchell99
    lmitchell99 Member Posts: 7
    #6
    wan13 said:

    My son has just finished neoadjuvent chemo and has been told that his tumour has actually increased in size. Did you niece's tumour shrink ?
    We have decided on below the knee amputatition as necrosis will not be known until the bone has been removed
    Willy@newtelsurf.com

    Her tumor actually shrunk, however was only 30% necrotic. They switched her chemo from methotrexate to ifosamide and etoposide as a result. Is it not possible to do limb sparing surgery in your sons case? My niece had 7 inches of her femur, her knee, and the top of her tibia and fibula removed, thus removing the tumor with wide margins. Obviously I'm not familiar with your sons case, but I would question why they can't do do limb sparing surgery, unless maybe the entire bone is affected? I hope all goes well!
  • lmitchell99
    lmitchell99 Member Posts: 7
    #7
    rwebb said:

    Sorry to hear about your niece. I had 75% necrosis and am three years out from surgery with no problems so far. Good luck to your niece and be sure to remind her that there is life after this ordeal.

    As a result of the 75% necrosis, was your chemnotherapy regimen changed? My niece was taken off methotrexate and put on ifosamide and etoposide in the hopes that the reply would be better. I'm glad to hear that you're doing well!
  • rwebb
    rwebb Member Posts: 7
    #8
    lmitchell99 said:

    As a result of the 75% necrosis, was your chemnotherapy regimen changed? My niece was taken off methotrexate and put on ifosamide and etoposide in the hopes that the reply would be better. I'm glad to hear that you're doing well!

    No, my chemo regiment was unchanged...
  • wan13
    wan13 Member Posts: 7
    #9
    lmitchell99 said:

    Her tumor actually shrunk, however was only 30% necrotic. They switched her chemo from methotrexate to ifosamide and etoposide as a result. Is it not possible to do limb sparing surgery in your sons case? My niece had 7 inches of her femur, her knee, and the top of her tibia and fibula removed, thus removing the tumor with wide margins. Obviously I'm not familiar with your sons case, but I would question why they can't do do limb sparing surgery, unless maybe the entire bone is affected? I hope all goes well!

    My son had a below the knee amputation on 7th July
    2004. The tumour was in the lower end of the fibula at a point where it very close to the tibia and some activity seemed present in the tibia
    Surgeons favoured amputation and we agreed The pathology report of the tumour showed less than 2% necrosis !!
    There was no invasion of blood vessels, other bones or soft tissue and we are rather puzzled by this. Osteo is a rare type of cancer and Marc had his tumour in a very rare place and he had a very rare necrosis result. I would like to hear some comments on this from anyone.
    Marc is doing well now and getting used to his prosthesis. He is on his fifth cycle of chemo
    willy@newtelsurf.com
  • sharris
    sharris Member Posts: 1
    #10
    My daughter had 44% necrosis. Limb salvage(tibia removed/replaced with allograft/metal rod) in 3/02. Finished chemo 12/02 (Ifosomide/Mesna/Doxirubin,Cisplatin,High DoseMethrx,) Remains in remission. Only setback encoutered was in Aug, the allograft fracturd,she has been in cast for 8 wks now,but she is producing bone @the break (miracle) and it appears to be healing slowly.
  • Improv87
    Improv87 Member Posts: 1
    #11
    Hi, Im a 3.5 year cancer suvivor of osteogenic scarcoma. To answer your question I had 60% necrosis not the best but still good. However from reading another post it seems that your niece had wide margins from the surgery. This is key because even if the necrosis was low they were able to get the entire tumor and any cells around it. For the other cells that may have been missed they at least know the chemothearpy is working. They may have changed her thearpy because of the response to the orignal protocal of chemo. Although my chemothearpy regiment wasn't changed due to the necrosis of the tumor It was extended with four extra doses of adrymicyn. In my case I later developed one metastase this summer. After it was removed my oncologist went over my options. More chemo or undergo regular ct scans. I chose the later and am still cancer free. Try not to get worked up over the necrosis of the tumor. The main thing is that they were able to have wide margins and that there are other medications avalible to be used if the orignal chemotheapy was not as effective as hoped.

    Good luck,
    Improv87
  • J2o1d4y6
    J2o1d4y6 Member Posts: 1
    #12
    Sorry to hear about your niece. I hope I can give you some hope.
    My 14 year old Daughter had 95%+ necrosis after 10/12 weeks of chemotherapy treatment. She has had a full femur replacement(Dec 22/05) and one lung surgery(March 13/06). We are still going through some minor treatment for her lungs(maybe surgery in Dec 06), but the good news is that the Dr. @ MD Anderson feels good about the long term out come. The road is very terrifying (because of the unknown), but you have to hang in there!! Good luck. Attitude is the key.
    Contact me at if you would like more info. J2o1d4y6@yahoo.com
  • todd15
    todd15 Member Posts: 4
    #13
    osteosarcoma said:

    Sorry to hear about your niece. My son had limb salvage surgery and he also had a 30 percent necrosis, but he relapsed just a few months later and will have his leg amputated next month. With osteosarcoma you never know..

    How is your son doing now? I also had a local recurrence and amputation is one of the treatment options.
  • drnolte
    drnolte Member Posts: 1
    #14
    rwebb said:

    Sorry to hear about your niece. I had 75% necrosis and am three years out from surgery with no problems so far. Good luck to your niece and be sure to remind her that there is life after this ordeal.

    necrosis
    did you have any spots on the lung?

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