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

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

Patient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: about 5 years ago, Female, Age: 42

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

    Surgery

    Procedure or Surgery

    I was in so much pain that I could barely move. I did not know what was going on until I woke up in ICU and my husband told me I had to have surgery to remove 3 tumors in my brain. Everyone was impressed with my recovery time and I was able to come home 3 days after surgery. I still have problems with my memory and sometimes with balance but the surgery went extremely well with a full resection!

    Went as Expected: Neutral/NA
    Minimal Recovery: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Strongly Disagree
    0 Comments
  2. 2
    • tervin
    • Experience with High-Grade Astrocytoma ...
    over 4 years ago
    tervin's Avatar

    Chemotherapy

    Drug or Chemo Therapy

    Chemo (Temodar) was done in pill form daily Monday - Friday. I was ill each Monday night for the course of initial treatment. We seem to have that under control now with the nasua meds. I'm now on chemo for 5 days of each month and am just very tired for the week of and after treatment

    Easy to Do: Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Disagree
    0 Comments
  3. 3
    • tervin
    • Experience with High-Grade Astrocytoma ...
    over 4 years ago
    tervin's Avatar

    Nausea medicine

    Drug or Chemo Therapy

    They started me out with phenegen(sp?) which helped Tuesday - Friday and made me sleep really well. I now take the phen, along with zofran and Emend. This combination works really well for me.

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

    External radiation

    Radiation

    The radiation experience was not nearly what I expected. I went for treatments daily and was taking valum for the course of treatment due to clostriphobia. The radiation caused most of my hair to fall out (small price to pay... I think). The treatments made me very tired all the time. I continued to lose hair for several weeks after radiation ended but it's coming back now. The main concentration was close to the scalp and I'm told it will not grow back fully.

    Painless Experience: Strongly Agree
    Minimal Side Effects: Agree
    Minimal Impact to Daily Life: Neutral/NA
    0 Comments
  5. 5
    • tervin
    • Experience with High-Grade Astrocytoma ...
    over 4 years ago
    tervin's Avatar

    Breast tenderness or growth

    Side Effects

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

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

    Chemo brain

    Side Effects

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

    0 Comments
  7. 7
    • tervin
    • Experience with High-Grade Astrocytoma ...
    over 4 years ago
    tervin's Avatar

    Fatigue (tiredness)

    Side Effects

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

    0 Comments
  8. 8
    • tervin
    • Experience with High-Grade Astrocytoma ...
    over 4 years ago
    tervin's Avatar

    Hair loss (alopecia)

    Side Effects

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

    0 Comments
  9. 9
    • tervin
    • Experience with High-Grade Astrocytoma ...
    over 4 years ago
    tervin's Avatar

    Memory changes

    Side Effects

    I used to be able to recall information and words like nothing. It is frustrating to not remember some things and I feel slow a lot of the time. It could be much worse and I believe it's getting better.

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

    Nausea/Vomiting

    Side Effects

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

    0 Comments
  11. 11
    • tervin
    • Experience with High-Grade Astrocytoma ...
    over 4 years ago
    tervin's Avatar

    Mood changes

    Side Effects

    I didn't think I was experiencing this until my children let me know I'm not much fun to be around during chemo. They tell me I get frustrated easily but they are getting used to it and are very understanding.

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

    Taste change/loss

    Side Effects

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

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

    Thinking problems

    Side Effects

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

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

    Hair is back

    Celebration

    My hair is growing back and I am going out in public without a hat since last week!

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

    Clear MRI

    Celebration

    I had my first MRI since completing radiation and there is no sign of regrowth. Next MRI will be after Thanksgiving.

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

    Job

    Loss

    FMLA started quickly and I had/have long and short term disability through work. Once the FMLA protection period ended I was told they had no choice but to let me go and fill the position.

    0 Comments
  17. 17
    • tervin
    • Experience with High-Grade Astrocytoma ...
    over 4 years ago
    tervin's Avatar

    Diagnosed

    Oh No

    I've had migraines since I was a teenager but this was the worst and longest lasting headache of my life. This information was learned from my husband after surgery because I remember very little. He took me several times to see 3 doctors and the ER and for 2 weeks they would only give me a shot of pain meds and send me home with a scrip for migraine meds that did not help at all. Finally; after several demands for an MRI a doctor agreed and they found 3 tumors in the right front of my brain. We were hopeful after a full resection that the biopsy would come back not milignant or a low grade. We got the diagnosis of grade 4 GBM. We were devistated, of course. I am so blessed for my family and we pretty much put together a fighting game plan.

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