Suzee's Journey with High-Grade Astrocytoma (also called G...

Caregiver: Brain and Spinal Cord Tumors in Adults > Glioma > Astrocytoma > High-Grade Astrocytoma (also called Glioblastoma)

Patient Info: Living with cancer as a chronic illness (undergoing adjuvant therapy), Diagnosed: over 6 years ago, Male, Age: 63

  1. 1
    • Suzee
    • Experience with High-Grade Astrocytoma (...
    over 4 years ago
    Suzee's Avatar

    Other

    Oh No

    Why? How ? What do I do now????

    0 Comments
  2. 2
    • Suzee
    • Experience with High-Grade Astrocytoma (...
    over 4 years ago
    Suzee's Avatar

    Where to have surgery; begin treatment.

    Decision Point

    My husband was out of state when he collapsed, alone. When found, he was taken to a trauma center. I flew there and, when he was stable, decided to have him med-evacuated to our state, to a well known university-based cancer center to have his surgery. To say the very least, I was scared, worried and praying that I was making the right choice. We experienced so many miracles.

    0 Comments
  3. 3
    • Suzee
    • Experience with High-Grade Astrocytoma (...
    over 4 years ago
    Suzee's Avatar

    "Debulking" of the tumor

    Procedure or Surgery

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

    Went as Expected: Agree
    Minimal Recovery: Disagree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  4. 4
    • Suzee
    • Experience with High-Grade Astrocytoma (...
    over 4 years ago
    Suzee's Avatar

    Body part/function

    Loss

    After surgery, my husband had experienced loss of his left visual field and weakness on his left side. Not paralysis, but limited use....

    0 Comments
  5. 5
    • Suzee
    • Experience with High-Grade Astrocytoma (...
    over 4 years ago
    Suzee's Avatar

    Anniversary

    Celebration

    Our 26th wedding anniversary was just a week after his surgery and was, coincidentally, the day he moved into the rehab hospital to begin Physical, Occupational and Speech Therapy.

    0 Comments
  6. 6
    • Suzee
    • Experience with High-Grade Astrocytoma (...
    over 4 years ago
    Suzee's Avatar

    External radiation

    Radiation

    My husband's radiation was something they referred to as "cone-down" for which he wore a mask they made specifically for him to keep him in the exact position necessary each time. The radiation was targeted to a specific area. He did really well with it, and didn't seem to have any side effects from it.

    Painless Experience: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
    0 Comments
  7. 7
    • Suzee
    • Experience with High-Grade Astrocytoma (...
    over 4 years ago
    Suzee's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    The initial round of chemo (Temodar) was given in tandem with the radiation (6 weeks: 42 days of Temodar; radiation was 5 days a week, or 30 sessions) He tolerated this really well and was getting stronger. Didn't lose any hair.

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  8. 8
    • Suzee
    • Experience with High-Grade Astrocytoma (...
    over 4 years ago
    Suzee's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Round 2 of temodar....after the initial round, there was a 2 month buffer and then round 2. The dose was much higher and, after the first month's dose (1 week on , 3 weeks off) I saw my husband's strength go down dramatically. Where he was once walking with assistance, he was then barely able to stand. I spoke with the doctor to lower the dose and give back some quality to my husband's life. And, he did. This was really the only side effect - loss of strength and the ability to walk for more than a short distance at home with assistance.

    Easy to Do: Agree
    Minimal Side Effects: Strongly Disagree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  9. 9
    • Suzee
    • Experience with High-Grade Astrocytoma (...
    over 4 years ago
    Suzee's Avatar

    Cancer is back/Recurred

    Oh No

    After 3 or 4 months on Temodar ('round 2'), the MRI showed the tumor growing significantly....

    0 Comments
  10. 10
    • Suzee
    • Experience with High-Grade Astrocytoma (...
    over 4 years ago
    Suzee's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    When the tumor grew, the chemo was switched to Avastin, given IV. We opted to continue having all treatments and follow-ups at the cancer center/university hospital where he received his surgery - an hour away from our home. So, it was a little inconvenient having to drive every week, but well worth it. My husband became a difficult 'stick', as it was hard for them to find a good vein to start his IV each time - so this is why I say it was not easy to do. He had no real side effects from the Avastin, other than he might have slept in a little longer the next day...but was it the Avastin or just the full day of travel and chemo that wiped him out ?!

    Easy to Do: Disagree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Agree
    0 Comments
  11. 11
    • Suzee
    • Experience with High-Grade Astrocytoma (...
    over 4 years ago
    Suzee's Avatar

    Novocure TTF-100

    Clinical Trial

    Actually, this has been approved by the FDA, but our hospital was just training on the device and my husband was their first patient. He had heard from some of his friends' emails about this treatment and asked his neuro-oncologist about it. The neuor-oncologist approved and my husband used the device in addition to remaining on Avastin.

    0 Comments
  12. 12
    • Suzee
    • Experience with High-Grade Astrocytoma (...
    over 4 years ago
    Suzee's Avatar

    Anniversary

    Celebration

    First anniversary of his surgery.....27th wedding anniversary...

    0 Comments
  13. 13
    • Suzee
    • Experience with High-Grade Astrocytoma (...
    over 4 years ago
    Suzee's Avatar

    Major Seizure

    Oh No

    My husband experienced a massive seizure about 15 months after his brain surgery. It was terrifying, to say the least. I called 911 and he was taken to the local hospital to stabilize, after which I had him transferred to the hospital where he is followed by our neuro-oncologist. He was so out of it and so very weak after the seizure. A week and a half in the hospital and 2 1/2 weeks in the rehab hospital. He had regained some of his strength after the temodar was halted some months before, but now he was weak and the rehab stay did not improve that much....Avastin was discontinued since the neuro-oncologist felt my husband was so weak and didn't want to add to this. The Novocure-TTF 100 seemed to be doing its job - the tumor had not recurred. There was no real determination as to what may have caused the seizure. No tumor growth, no bleed.

    0 Comments
  14. 14
    • Suzee
    • Experience with High-Grade Astrocytoma (...
    over 4 years ago
    Suzee's Avatar

    Remission

    Celebration

    Two months after the seizure, there is no tumor activity. Barely anything to be seen and my husband is doing well. He is still weak, but gaining strength and looking forward to the holidays....

    0 Comments
  15. 15
    • Suzee
    • Experience with High-Grade Astrocytoma (...
    over 4 years ago
    Suzee's Avatar

    Cancer is back/Recurred

    Oh No

    After doing so well and really improving in strength and abilities, we were floored when the next MRI show some significant tumor growth. I think even the neuro-oncologist was puzzled as he went through a neuro-exam prior to telling us the disappointing news. My husband was actually much improved, physically, from when the doctor last saw him. My husband was taken off of the Novocure TTF100, as the neuro-oncologist felt it had not kept the tumor cells from growing. He recommended that my husband go back on Avastin.

    0 Comments
  16. 16
    • Suzee
    • Experience with High-Grade Astrocytoma (...
    over 4 years ago
    Suzee's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Back on Avastin....my husband had a port-a-cath put in a few months back, so now it is much easier for him to receive his IV Avastin every two weeks. No searching for a good vein. Aside from the commute to our hospital, it has not been a problem...since it is still technically winter, we always fret about what kind of weather we might have to face on our chemo day....

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Agree
    0 Comments