stacy0611's Journey with Brain and Spinal Cord Tumors in Adults
- 1 Oh No Icon Oh No
- 2 Procedure or Surgery Icon Procedure or Surgery
- 3 Clinical Trial Icon Clinical Trial
- 4 Drug or Chemo Therapy Icon Drug or Chemo Therapy
- 5 Radiation Icon Radiation
- 6 Side Effects Icon Side Effects
- 7 Side Effects Icon Side Effects
- 8 Side Effects Icon Side Effects
- 9 Side Effects Icon Side Effects
- 10 Side Effects Icon Side Effects
- 11 Side Effects Icon Side Effects
- 12 Side Effects Icon Side Effects
- 13 Decision Point Icon Decision Point
Patient: Brain and Spinal Cord Tumors in Adults
Patient Info: Finished active treatment less than 5 years ago, Diagnosed: over 9 years ago, Female, Age: 51
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Radiation: Drag this icon to show a specific radiation therapy experience.
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Oh No: Drag this icon to show when something bad happened (e.g., cancer’s back, lost job).
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Diagnosed
Oh No
I had inital symptoms that my local ER felt needed a CT scan. Nothing showed. My ER doctor suggested I make an appointment with my family doctor for a follow up MRI. We discussed my symptoms possibly being MS. I had my MRI and found out about my tumor about 2 weeks later.
Surgery
Procedure or Surgery
After the inital 4 or 5 days, I was able to see Neuro-oncology and a Neuro-surgeon. We agreed that a biopsy would be done the following morning. I woke up to a primary Gr. 2, astrocytoma, filtrative tumor that took up most of 1/4 of my brain.
Clinical Trial
I was very sure I wanted to do the most agressive treatment I could and it came down to being in a study group for low grade brain tumors. It was not guarantee I would get the drug, but I was not "risking" anything by being radomized. I would get 5 1/2 weeks of radiation and randomized to see if I would get Temador.
Other
Drug or Chemo Therapy
Was randomized into Temodar study and ended up with chemo and radiation.
External radiation
Radiation
Was randomized into Temodar study and ended up with chemo and radiation. 5 1/2 weeks of radiation, 5 days a week and 7 days a week of Temodar.
Chemo brain
Side Effects
During Chemo - chemo brain. It has gotten worse since my treatement!
Fatigue (tiredness)
Side Effects
During Chemo - some fatigue, but I lived on my own, in a new city, for a month and a half while I was doing treatment. I went to appointments, radiation, took chemo.
Anemia (low red blood cell counts)
Side Effects
I still have anemia 6 months after leaving chemo.
Flu-like symptoms (fever, chills, sweats)
Side Effects
I ended up with a 103. fever, in isolation after my first 5 day cycle of Temodar (Did bulk temodar treatment with radiation and was to do 5 days on/28 days with temodar for 12 months)
Hair loss (alopecia)
Side Effects
Lost 1/2 a head of hair due to radiation/chemo (right side is tumor/affected)
Low platelet counts (thrombocytopenia)
Side Effects
2nd month of temodar - platelets were low.
Low white blood cell counts (neutropenia)
Side Effects
Could not continue 3rd month of Temodar as it was too toxic. My white cells and platelets were too low.
Decision Point
I opted to leave chemo and any further treatment 5 months into diagnosis.