Bigg_Scott's Journey with Fibroblastic, High-Grade Osteosarcoma

Survivor: Bone Cancer > Osteosarcoma (Also called Osteogenic Sarcoma) > High-Grade > Fibroblastic

Patient Info: Finished active treatment more than 5 years ago, Diagnosed: over 10 years ago, Male, Age: 37

  1. 1
    • Bigg_Scott
    • Experience with Fibroblastic, High-...
    over 4 years ago
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    Diagnosed

    Oh No

    Looking back, I believe my tumor had been growing in my head for 12 years. But the last two years I regularly experienced three types of pain. 1. Sinus infection pain, 2. Trigeminal neuralgia, 3. and a really heavy headache every morning that usually eased up as the day wore on. I was having night sweats. And most mornings I would wake up and have blood, a clear liquid, or a mix of the two gush out of my nose. And I had started having hot / cold intolerance. I just didn't feel right. But the dentists and doctors kept misdiagnosing me. Finally, an otolaryngologist arranged a surgery to fix a few minor things he saw on the CAT scan I had. He COMPLETELY missed the huge tumor that was completely filling my right maxillary sinus and bowing the bone outward (the cause of my pain). Unfortunately the surgery was on my 26th birthday. Because he set me so at ease that "it was nothing much," I was calm and relaxed. He almost killed me that day. When I woke up hours later in a different hospital, my world was flipped upside down and my parents didn't know what to do. None of us had heard the word "cancer" yet--and we wouldn't for a couple weeks--but we knew something was wrong with me. A month before that, I was an "invincible" 25 year old who had just bench pressed 405 pounds.

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  2. 2
    • Bigg_Scott
    • Experience with Fibroblastic, High-...
    over 4 years ago
    Bigg_Scott's Avatar

    Which cancer center to go to, and to accept the doctors' treatment plan or not

    Decision Point

    Since my cancer was bone cancer in the head (which they told me is rare), the doctors in Cheyenne, Wyoming didn't want to treat me. They sent me to Denver, Colorado. They were getting ready to treat me, but then backed out. They wanted me to either go to a cancer center in Houston, Texas, or one in Los Angeles. I chose Texas. M.D. Anderson Cancer Center. I was cross listed on the "head and neck" and "sarcoma" floors. So I quickly saw medical oncologists, radiation doctors, surgeons, and plastic surgeons. They saw me individually, then all met together to discus my case and how best to treat me. My surgeon called me while I happened to be shopping in one of Houston's huge malls, told me what they wanted to do, and asked for my permission. I agreed to their plan, and they took it from there getting everything setup for me!

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  3. 3
    • Bigg_Scott
    • Experience with Fibroblastic, High-...
    over 4 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    The first chemo was called Ifosfamide. The doctor told me he would be giving me a dose that would make most medical oncologists' jaws drop. At the time that sounded good. It would be killing my cancer, after all. He ALSO could tell that I am smart and inquisitive--and he seemed to be the one of my doctors with the biggest ego problem. He told me that he is one of the world's foremost experts on what I had, and that it was so rare that I wouldn't likely find any info on my type of cancer in my location. He highly recommended that I not try to do any research. Leave that to him. So... I did. Left it mostly to him, that is. And I regret it. He's right in that he is an expert and has a medical degree. But I would absolutely recommend to anybody who has the time and ability to DO some research. You don't have to disagree with your doctor. But researching your disease and treatments yourself will either make you encouraged about what the doctor thinks is best for you, OR it just might make you see that the doctor is trying something that isn't recommended by the majority of other cancer docs. Research it. If I could do two things over again, I would have spent many hours in a medical library as one of them. But back to Ifosfamide. It gave me "the usual" effects of some nausea / vomiting, and hair loss. But the very worst thing that drug did to me was send me on a 2-3 month dysphoric trip. It was terrible. I was having mild hallucinations, lack of understanding of time, fear of water, and I never knew when I was asleep or awake. It wasn't cool like the movie "Inception," but I would keep thinking I was waking up from dreams, but I was still dreaming. It went many layers of nightmares down. Not fun. At all. But, once my 2 or 3 months of that was over (those memories are really hazy now and I can't nail down any time frames) life cleared up. My brain came back from the terrible trip. But I still had to worry about the upcoming surgery...

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  4. 4
    • Bigg_Scott
    • Experience with Fibroblastic, High-...
    over 4 years ago
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    External radiation

    Radiation

    IMRT. 50 Grays. The time bolted to the table while the machine moves around and shoots beams through your head is not pleasant. The damage it does to surrounding tissues is permanent. The energy sapping, mouth ulcers, "sunburn," and other mild effects aren't fun. ...but they do go away. You will heal up after it!

    Painless Experience: Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
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  5. 5
    • Bigg_Scott
    • Experience with Fibroblastic, High-...
    over 4 years ago
    Bigg_Scott's Avatar

    Health insurance issue

    Oh No

    Health insurance dropped me in the middle of my chemo and radiation--my pre-scheduled surgery was about 2 months away! I found this out when I tried to check in for my dose of chemo. THAT was a shock! And would they NOT DO my surgery because the health insurance dumped me?! My parents' scrambled and called lawyers, state officials, insurance companies, etc. Mostly while I slept. They cried when I wasn't around. Finally they found a state high risk pool that was very expensive, but it had a catastrophic cap. I could finish up all my medicine.

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  6. 6
    • Bigg_Scott
    • Experience with Fibroblastic, High-...
    over 4 years ago
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    Surgery

    Procedure or Surgery

    Knocked out. With my close family, extended family, and some friends crying, praying, and sitting shocked in the waiting room. Surgery was 15 hours long. Two teams of doctors worked on me. 1. the surgeon who cut my cancerous upper jaw out of my head with a hammer and chisel and other tools, and 2. the plastic surgeon's team who harvested tissues from 3 sites at my body and rebuilt my face in the same long surgery! They kept me knocked out all the next night so that my doctors could go home and sleep. They wanted to be there when I woke up just in case anything went awry with me. Nothing did. I was fine! With a trach, a nasogastric feeding tube, and a ton of pain medicine. I don't remember a lot of those first few days because of the meds... though what I do remember was very hard to life through. I spent about a week inpatient, then got to go home. There was one minor hitch, with complications from the surgery cutting off my airway, so we had to go to the cancer ER for one more night, and a doctor removed two large masses of stuff from my throat so I could breathe. After that, it was healing time!

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  7. 7
    • Bigg_Scott
    • Experience with Fibroblastic, High-...
    over 4 years ago
    Bigg_Scott's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Chemo and radiation done before surgery was not very effective. Pathology said tumor was only 61% dead. Medical oncologist recommended 4 more cycles of Doxorubicin and Cisplatin. Hesitantly, I agreed. The first cycle started damaging my kidneys heavily, and I decided that the risks of the medicine outweighed the benefits, so I made the doctor stop treating me. Looking back, I am very glad I chose to stop--and wishing I had stopped earlier!

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
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  8. 8
    • Bigg_Scott
    • Experience with Fibroblastic, High-...
    over 4 years ago
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    Finished treatment

    Celebration

    I finished treatment on my terms, though I was afraid and depressed at the time. I prayed to my God, and had to convince my family that quitting my chemo against the advice of the doctor was the only thing I felt right doing. I am approaching 6 years cancer free now!

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