rokjhn's Journey with Malignant Fibrous Histiocytoma (MFH)

Patient: Bone Cancer > Malignant Fibrous Histiocytoma (MFH)

Patient Info: Finished active treatment less than 5 years ago, Diagnosed: about 5 years ago, Male, Age: 52, Stage III

  1. 1
    • rokjhn
    • Experience with Malignant Fibrous Histi...
    over 4 years ago
    rokjhn's Avatar

    Removal of what was intially thought to be a simple hematoma.

    Procedure or Surgery

    This person has yet to add any details about this experience.

    Went as Expected: Strongly Disagree
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  2. 2
    • rokjhn
    • Experience with Malignant Fibrous Histi...
    over 4 years ago
    rokjhn's Avatar

    Misdiagnosed

    Oh No

    Mass in my calf was thought to be a simple hematoma and surgery was scheduled for removal. However, pathology diagnosed MFH and my journey began.

    0 Comments
  3. 3
    • rokjhn
    • Experience with Malignant Fibrous Histi...
    over 4 years ago
    rokjhn's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Chemotherapy was the hardest thing I've ever had to experience, that being said, doctors indicated that I handled it remarkably well. Had six rounds in total, each round consisted of 5 days of 24 hour infusion of Adrimiacyn, Ifosfamide, and Mesna.

    Easy to Do: Strongly Disagree
    Minimal Side Effects: Disagree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  4. 4
    • rokjhn
    • Experience with Malignant Fibrous Histi...
    over 4 years ago
    rokjhn's Avatar

    Chemo brain

    Side Effects

    Chemo brain is the real deal and I can describe it as being in a fog. I couldn't concentrate on anything for very long, which made reading a book, writing, or even watching TV an exercise in futility. Confusion was almost a constant state of mind and it was a very frustrating experience.

    0 Comments
  5. 5
    • rokjhn
    • Experience with Malignant Fibrous Histi...
    over 4 years ago
    rokjhn's Avatar

    Constipation

    Side Effects

    Constipation that led to major hemorrhoid issues and pain like I've never experienced. In hindsight I should have been taking stool softeners from the very beginning and the problems probably wouldn't have been as bad.

    0 Comments
  6. 6
    • rokjhn
    • Experience with Malignant Fibrous Histi...
    over 4 years ago
    rokjhn's Avatar

    External radiation

    Radiation

    Had 25 doses to my calf with no real side effects until the week after finishing. It was at that point that the radiated area started to blister and look like a horrible sun burn, lasted about a week and then all appeared to be well.

    Painless Experience: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  7. 7
    • rokjhn
    • Experience with Malignant Fibrous Histi...
    over 4 years ago
    rokjhn's Avatar

    Anti nausea medication protocol

    Clinical Trial

    Fosaprepitant is drug commonly given before and after chemo to help prevent nausea and vomiting. The Clinical trial involved getting an extra dose on day one and then day four of chemotherapy. I had the protocol on my first round and did not on round two. What a big difference it made to have the protocol and I was fortunate to have it for my final four rounds.

    0 Comments