msfullofhope'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: over 5 years ago, Female, Age: 53

  1. 1
    about 5 years ago
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    Work problems

    Oh No

    On 7/10/12, while at my office (I am a Director of Social Work) , I was unable to type or form words. This was the "day" that it all began. I was taken to the ER, and admitted. MRI's, CT scans and multiple tests were done (also spinal tap) and the outcome was that there was concern about a brain tumor! UGH!

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  2. 2
    about 5 years ago
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    Conference call

    Decision Point

    On 8/7/12, my husband and I received word that the pathology reports have come in. Dr. Olivi (neurosurgeon) was not in the country, but the nurse said she would be willing to discuss the results. I knew that getting this info over the phone was not the best idea, but I HAD too know. When she said I had Gliablastoma Malforma Grade IV , my bottom fell out! So.....here is the info and now I was going into brain surgey on 8/10. This was tough...but I did survive! Thank God for my husband!

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  3. 3
    about 5 years ago
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    Surgery

    Procedure or Surgery

    I had a crainioltomy on 8/10. This was my first surgey for the GBM IV. I was told that the neuro surgeon got the entire tumor as well as some of the buffer area around it. I have had no negative side effects and was up and about within 36 hours after surgery. Right now I feel great and hope to stay this way. I do start radiation, chemo and an experimental drug on Tuesday 9/4.

    Went as Expected: Strongly Agree
    Minimal Recovery: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  4. 4
    about 5 years ago
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    External radiation

    Radiation

    I started radiation on 9/4/12 with standard chemo. I go to Johns Hopkins Cancer Center 5 days per week for 6 weeks. I am ok with wearing the "mask" and actually just relax for the treatment time. I have just started to lose my hair from the radiation, but in the grand scheme of things , I am feeling well.

    Painless Experience: Strongly Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Agree
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  5. 5
    about 5 years ago
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    BSI

    Clinical Trial

    On 9/4, the same day I started chemo and radiation, I started a clinical trial called BSI . The plan was that I would have an infusion of this drug 2x per week for about 18 weeks. I was up for the challenge but by the 9/5, I had an "allergic reaction" wiith rashing all over my chest, neck and face area with lots of itching. My husband called the nurse who saw the "reaction" and tok me off the infusion. The research nurse and oncologist came and it was determined that it was just too much. Becasue of the reactioon, I had a seizure that lead to a week of aphasia (unable to type, talk well). I am now 100% but am on steriods (low dose) to help keep the apahia at bay.

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  6. 6
    about 5 years ago
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    Finished treatment

    Celebration

    I finished my 6 weeks of radiation on 10/15 and with that, no temador for four weeks. It some ways it is bitter sweet , as at least with the radiation and temodar, I was doing "something" . Now it is a "wait and see". Nonthelsss, I am here and plan on continunig to be !!!!!

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  7. 7
    about 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    I started temodar (150 mg) per day on 9/4/12. I have been fortunate to have no nausea or other issues.

    Easy to Do: Strongly Agree
    Minimal Side Effects: Strongly Agree
    Minimal Impact to Daily Life: Strongly Agree
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  8. 8
    almost 5 years ago
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    Birthday

    Celebration

    I turned 49 !

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  9. 9
    almost 5 years ago
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    Chemotherapy

    Drug or Chemo Therapy

    Over the past three months, I have been on the 5 day (per month) temador regiment. I finish the third round tonight (1/13/13). I have had little to no nausea and my energy is not bad at all (working in office 2 days a week and 3 days at home). The only issue has been constipation, but it is tolerable. My blood counts have been great and things are well overall.

    Easy to Do: Agree
    Minimal Side Effects: Neutral/NA
    Minimal Impact to Daily Life: Agree
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  10. 10
    almost 5 years ago
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    Status of MRI and MGMT gene

    Celebration

    I just returned from my doctor and he said that the news is good. He said there is no evidence of the tumor and that the "cavity" where the tumor was is even "shrinking". All my blood counts and numbers are also within normal limits so we keeping moving ahead with the temodar. He also mentioned again that I happen to have this MGMT gene and that it is a good thing. Here is some info on it but from what I understand it is a more favorable prognostic indicator for longer term outcome. YEAH Look at the link below about the MGMT gene and ask your doctor if you can be tested for it, Http://neurosurgery.ucsd.edu/brain-tumor-research-mgmt/

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  11. 11
    over 4 years ago
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    Review of latest MRI

    Celebration

    My husband and I met with my oncologist today and the latest MRI (dated 3/18/13) was very positive. He sees no evidence of the tumor and this scan is even better that the previous one! He is thrilled with the outcome, said that I am beating the odds and is optimistic because I have so many variables that make it seem like the stars aligned to keep this tumor at bay!

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  12. 12
    about 4 years ago
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    Celebration

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

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  13. 13
    over 4 years ago
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    Anniversary

    Celebration

    One year ago my journey with GBM started. Today is the one year anniversary of the event which changed my life. I continue to have clear scans.I work, I think, I love and I enjoy life! I am forever grateful to my husband who continues to be by side on this journey.

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