misha41510's Journey with High-Grade Astrocytoma (also called G...

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

Patient Info: Diagnosed: almost 7 years ago, Female, Age: 57

  1. 1
    • misha41510
    • Experience with High-Grade Astrocyt...
    almost 6 years ago
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    Tumor found

    Oh No

    I was only one week into my second semester of college in Chicago when my dad called to tell me that my mom had a brain tumor. It was so unexpected that it took about 10 minutes for it to sink in. I kept thinking, "but I saw her only a week ago! and she was fine!" Thankfully, I was surrounded by two wonderful friends who comforted me. Her tumor was in her right frontal lobe and was about the size of a golf ball. They said it had grown 4 centimeters in 4 months.

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  2. 2
    • misha41510
    • Experience with High-Grade Astrocyt...
    almost 6 years ago
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    Surgery

    Procedure or Surgery

    After my dad informed me that my mom had a brain tumor, he told me that she would be going into surgery in a couple days. I was ready to go home to California for the surgery, but my mom insisted that she'd rather I'd stay in Chicago for school. So on the day of the surgery, I went to my classes like any other day. Let's just say it was incredibly difficult to get through my classes. In one class, my professor decided we should spend the day discussing the psychological effects of losing a close family member. I almost started sobbing right there in class.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  3. 3
    • misha41510
    • Experience with High-Grade Astrocyt...
    almost 6 years ago
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    Diagnosed

    Oh No

    The next day I flew home to see my mom. Little did I know, that I would never be returning to Chicago for school. When I arrived at the hospital, my dad told me that the surgery had been successful. The entire tumor was removed. But it was malignant and it had been diagnosed as something called Glioblastoma Multiforme.

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  4. 4
    • misha41510
    • Experience with High-Grade Astrocyt...
    almost 6 years ago
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    Decision Point

    I spent the next week going back and forth whether or not to return to Chicago or stay home. One one hand, I had only been in Chicago for one semester. I had not been there long enough to build a whole life I would be leaving. On the other hand, I would be leaving a theater conservatory like no other. In the end I decided to move back home for my mom. And I began taking classes at the local community college so I would not fall behind in school.

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  5. 5
    • misha41510
    • Experience with High-Grade Astrocyt...
    almost 6 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    My parents do not keep me updated on my mom's treatments, so I'm not sure what kind of chemotherapy she was on, or for how long.

    Easy to Do: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  6. 6
    • misha41510
    • Experience with High-Grade Astrocyt...
    almost 6 years ago
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    Radiation

    Again, my parents don't really keep me updated on my mom's treatments, so I don't know what kind of radiation she had. All I know is that she did it for 6 weeks. And that she did it at the same time as the chemo.

    Painless Experience: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  7. 7
    • misha41510
    • Experience with High-Grade Astrocyt...
    almost 6 years ago
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    Participation in Brain Tumor Walk

    Celebration

    In May, my family (including my mom) participated in the San Francisco Brain Tumor Walk. I was a joyful event, especially since my mom completed the entire 5k!

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  8. 8
    • misha41510
    • Experience with High-Grade Astrocyt...
    almost 6 years ago
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    Memory changes

    Side Effects

    About this time, I started noticing my mom's memory starting to fade. Unfortunately, it has been getting worse and worse. I'm not sure what is exactly to blame for the memory challenge. But I think it has to do with the chemo.

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  9. 9
    • misha41510
    • Experience with High-Grade Astrocyt...
    almost 6 years ago
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    Decision Point

    By June, I was starting to get fed up with how I was being treated at home. I was expected to practically work as a slave for my family to run the household. And I felt like no one bothered to consider how I was feeling. I was being treated like a child. So I decided to move in with my boyfriend in Oakland. It was a tough decision to make. But I decided that in order to at least try to keep myself emotionally as well as physically healthy, I needed to get out of my parents house.

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  10. 10
    • misha41510
    • Experience with High-Grade Astrocyt...
    almost 6 years ago
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    Mood changes

    Side Effects

    My mom's cancer is in her frontal lobe. The frontal lobe controls your personality. So you can imagine that there have been mood changes. I would call them personalitiy changes. I can no longer predict how my mom is going to react to something. She has become more controlling and demanding since the diagnosis, which I assume is from the placement in the frontal lobe. Who knows. Maybe that's just the way she reacts to having cancer. I'm not sure. The frontal lobe is also in charge of maturity, so she has become less and less mature. Most of the time she seems to act like a child. The mood changes have been slow to appear, and they have not been getting any better.

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  11. 11
    • misha41510
    • Experience with High-Grade Astrocyt...
    almost 6 years ago
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    Cancer is back/Recurred

    Oh No

    The doctors thought that the MRI was just showing a 'pseudo-progression' and that it was just swelling. But it turned out to be the tumor returning.

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  12. 12
    • misha41510
    • Experience with High-Grade Astrocyt...
    almost 6 years ago
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    Surgery

    Procedure or Surgery

    In September, my mom had a second surgery to remove the tumor that had grown back. The surgery was successful.

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  13. 13
    • misha41510
    • Experience with High-Grade Astrocyt...
    almost 6 years ago
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    Misdiagnosed

    Oh No

    After the surgery, we found out that the cancer was a Glioblastoma. However, it was an INCREDIBLY rare form of Glioblastoma known as Gliosarcoma. I'm not entirely sure what the difference is. But I do know that there are an INCREDIBLY low number of reported Gliosarcoma cases. So little is known about them that they are treated exactly the same as Glioblastomas. I'm not so sure if that's a good thing.

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  14. 14
    • misha41510
    • Experience with High-Grade Astrocyt...
    almost 6 years ago
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    Clinical Trial

    The doctors at UCSF suggested that my mom join a clinical trial testing the effects of a chemotherapy drug known as CPT-11, which has already been approved for other types of cancer.

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  15. 15
    • misha41510
    • Experience with High-Grade Astrocyt...
    almost 6 years ago
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    Cancer is back/Recurred

    Oh No

    Seems like the CPT-11 isn't working on my mom's persistent cancer.

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  16. 16
    • misha41510
    • Experience with High-Grade Astrocyt...
    almost 6 years ago
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    Clinical Trial

    She has signed up for a new clinical trial offered by UCSF. It involved a surgery where they inject a virus into the cancer cells and then 3 weeks later, she begins taking TOCA pills which when they come in contact with the virus, they turn into something else and begin attacking the cancer cells. It's in it's very early stages of the trial. I'm so grateful that she was able to get on the trial. They originally told us that they already had the 9 patients they needed, but they added her on as a 10th!

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  17. 17
    • misha41510
    • Experience with High-Grade Astrocyt...
    almost 6 years ago
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    Surgery

    Procedure or Surgery

    She had to have surgery as part of the new clinical trial. Good news is that what they thought was tumor regrowth on the MRI was actually mostly dead cancer tissue. So the tumor wasn't as big as we thought! Also good news, they did find some live cancer cells so that she could stay in the clinical trial!

    Went as Expected: Not Specified
    Minimal Recovery: Not Specified
    Minimal Side Effects: Not Specified
    Minimal Impact to Daily Life: Not Specified
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  18. 18
    • misha41510
    • Experience with High-Grade Astrocyt...
    almost 6 years ago
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    Seizure

    Oh No

    Today my mom had her first seizure. I know it's common for Brain Cancer patients to have seizures, but my mom's had Brain Cancer for almost a year now, and she's never once had a seizure. It certainly shocked my when I got the voice mail from my dad about it. He and my mom were shopping at Costco when it happened. Fortunately there were no complications and she's back home now. But it's certainly a wake-up call.

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  19. 19
    • misha41510
    • Experience with High-Grade Astrocyt...
    almost 5 years ago
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    Lost loved one

    Loss

    My mom passed away on July 29, 2012. You can read about my experience in my blog at http://cominghometocancer.blogspot.com/

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  20. 20
    • misha41510
    • Experience with High-Grade Astrocyt...
    almost 5 years ago
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    After Party

    Celebration

    Just as my mom asked for, we through her an "After Party" about a month after she passed away. It was a joyous celebration of her life full of laughter, dancing, and happy memories, just what she would've wanted.

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