My son 19 year old diagnosed Telangiectatic osteo sarcoma...

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  1. Diagnosed 3 months ago, in his left lower leg,  after trying to save the leg for 2 months, and doing just 1 chemo of first cycle, the bone did not hold up, he underwent amputation of the left lower leg one mont ago.
  2. Now we have to finish that firs cycle we started before the amputation. Second "cure" in firs cycle of chemo increased his liver enzymes  on onchology gave us instruction to stop giving suporting theraphy of C vitamin, zinc, omega-3, selenium, magnesium that he took to help the body. Tomorow  we are taking him to the hospital for the next dose and we are afraid because of this withdrawal of supportive therapy.
  3. PET/CT scan was arranged at the beginning of the january, we are afraid of the results of the scan.
  4. After the amputation, there were no malignant cells on the incision, but the oncologist said that it doesn't mean much now...
  5. I don't have to explain, as a mother, how much we are afraid.
    He feels fine and accepted the amputation as something necessary, at least that's how it looks on the outside, he's probably scared too, but he doesn't show it. he assures us that he feels that there is no more sarcoma in him.
  • Hi  

    I can only imagine the concern when your child has cancer as my "relationship" is via my wife - hers Leiomyosarcoma. However I do not have to imagine the impact that cancer has on carers - being there for over six years now.

    Janice has had quite a lot of PET/CT scans - on here we sometimes talk about the worry in scans - scanxiety - however not matter how much we worry it will not change the outcome one bit.

    I know I had times when I really struggled. I ended up doing a living with less stress course that really helped me. The mindfulness - living in the moment, day to day was probably the best - I was great at painting a future much more bleak than actually happened. Conscious breathing was also helpful in terms of dealing with the inevitable curve balls in life but also in terms of relaxing and getting some sleep. Transcendental meditation though did not really work for me.

    <<hugs>>

    Steve

    Community Champion Badge

  • Thanks for commenting and describing part of your struggle, we are still trying to live one day at a time, it is very difficult. Further therapy has been postponed for us at the moment
    because his liver enzymes were extremely elevated due to methotrexate therapy.
    After the amputation of the lower leg, it was not possible to wait long with the continuation of chemotherapy, so now the healing of the wound is complicated.
    I don't know if I should tell you that I am glad that you are with your wife 6 years after the diagnosis.
    • The statistics are usually devastating when it comes to survival, we try to read positive stories and outcomes of ontology patients. Now we are fighting what to eat, what to drink, on onkology we have been told to exclude all supportive therapy (vitamin c, magnesium, zinc, selenium) because maybe this caused the increase in enzymes with cytostatic treatment.
    • I hope your fight ends in victory. Warm greetings and lot of support in your fight from Filip's fighting team from Osijek