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Treatment

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This topic contains 9 replies, has 6 voices, and was last updated by Joemanna joemanna 1 month, 1 week ago.

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  • #9852
    Joemanna
    joemanna
    Participant

    Hello guys, just wanted to know that if anyone here knows or have experience of immunotherapy for brain cancer? Next week I have an appointment at a local university hospital to discuss being enrolled in a clinical trial I have heard good results with immunotherapy being used for other forms of cancer. I would really appreciate if anyone could share their insights or experience.

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  • #8237
    Jballin62
    jballin62
    Participant

    Hey there sophistickann in my experience they gave me transfusions for it. The common symptoms for low platelet counts would be severe bleeding from any cut due to the platelets inability to clot the blood and I’ve also experienced chest pains.

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  • #8235
    Sophistickann
    sophistickann
    Participant

    Have any of you had a low platelet issue? If you did, what did you do to bring them back up?

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    • #8236
      Sophistickann
      sophistickann
      Participant

      Also, my dr thinks I just didn’t tolerate the temozolomide, but I was on taking doing 380mg. I don’t feel like it was that much. Can anyone weigh in?

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  • #7701
    JonStein
    jonstein
    Participant

    I was diagnosed with anaplastic astrocytoma which was removed incompletely. I have received chemoradiation for the same and now on tab temozolamide. The scans are fairly normal now. But I am really afraid of the disease coming back. Did anyone else had it?

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    • #7756
      Justjen
      justjen
      Participant

      I have a grade 2 astrocytoma, or diffuse astrocytoma. It’s a grade below yours. I know and understand the fear because I feel it too. My doctors are extremely honest with me. My neurosurgeon who manages my MRI scans has been clear that it’s not a question of if, but when. I had a really great resection and did radiation and chemo pills. I’m almost 4 years post-op and nothing has come up so far. He has said that the thing to hope for is a return at the same staging. I know this is scary and unfair. But, it’s the hand we’ve been dealt so I choose to reach out to others like me and help.

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      • #7769
        JonStein
        jonstein
        Participant

        So how is your journey going on justjen? Can you please share the type of treatment did you receive for it?

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      • #7770
        Justjen
        justjen
        Participant

        Low grade astrocytoma. It’s rare compared to other malignant tumors. I did 25 sessions of radiation and was on Temodar during that. After radiation I did 8 months of higher strength Temodar. I took it 5 days in a row per month. It made me feel awful, but only for about 10 days each month. I now get MRI scans every 6 months to check for any signs of regrowth. My tumor was in my frontal lobe so I have some issues with word finding and emotions. The word finding isn’t awful and has improved since I began an Alzheimer’s medication for it. I have trouble calming down once I start crying. I went 3 therapy to learn anxiety coping skills to help me not get as upset and it worked well. I have chronic daily headaches in the exact same spot as my tumor. Headaches were my only symptom of the tumor, and it feels the same. That’s not normal to have chronic headaches. Most people don’t have them after treatment. I’m currently working with a neurologist to combat them. My surgeon told me that statistically my kind of tumor comes back around the 7 to 10 year mark, but that means nothing really. Lots of people survive much longer or never have it come back. I’m 4 years post op and haven’t had any sign of return.

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      • #7838
        JonStein
        jonstein
        Participant

        I also get headaches on and off. But I try to focus on the other positive aspects of my life. You have fought it bravely @justjen – must say and doing so everyday. I hope you remain in the best of health. Best wishes

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  • #7699
    Cancer_bro
    cancer_bro
    Keymaster
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