New to All of This

katyana72
katyana72 Member Posts: 5
in Brain Cancer #1
Hi everyone. My father was diagnosed on April 26th with Glioblastoma Multiforme Grade IV and had an emergency craniotomy on April 29th where the neurosurgeon was about to resect about 93% of the tumor. The second tumor was in a location that the neurosurgeon felt was inoperable. He underwent radiation therapy (30 sessions) as well as chemotherapy (Temador) and had started maintenance chemotherapy. Last week, we found out that tumor had not only grown back but was larger than it was prior to his surgery. On last Wednesday, he started taking a chemotherapy drug named CPT-11 in the hope that this treatment will help shrink and/or stop the tumor from growing.

During a private conversation I had with my father's oncologist, I asked him to be honest with me and to tell me what to expect. His response was that we needed to start getting my father's affairs in order and that his prognosis is approximately 12 months from his initial diagnosis...which means he may have approximately 8 months left. He went on to tell me that Avastin along with CPT-11 would give him a greater chance in shrinking the tumor; however, because he's suffered from blood clots and is on a blood thinner, he can't give him the Avastin. Another factor against my father is his age. He's 67, and the oncologist informed me that patients over 60 do not do well with this cancer.

I'm not sure what to expect from all of this. I've moved in with my parents to help my mother care for my father, to drive them to his appointments, and to do whatever else is needed of me. It hasn't been easy, because, it's difficult to see him this way. He's not in any pain; however, he's lost lots of weight. I'm trying my best to handle things for my mother (deal with insurance companies, research all of the drugs and treatments he's been put on or currently undergoing, etc.); however, there is little information about what the patient goes through...especially once the tumor has progressed to the point where there is nothing left for the doctors to do. Can anyone offer advice or share their experience with me?

Katyana

Comments

  • 4theloveofmysis
    4theloveofmysis Member Posts: 248
    #2
    katy
    Im so sorry to hear that you are now on this road we are traveling. My sister was dx with GBM4 Feb 22,inoperable. Everyones story is diffrent. Some people do well and some people dont. There are sites that have stories of people that have survived for a long time. Start there...Get the affairs together. And be there for your Dad. Take it one day at a time. Somedays are better that others. Love, laugh, and make every minute count.
    I stopped looking the cancer up along time ago. Im a chemo nurse and know more that I want to know. Personally I dont want to know the end, dont want to thing about it at all, Wish I didnt know it was coming. I am so heart broken. My sister is my rock and my best friend. This cancer has ripped our lifes apart.
    My sister is a fighter And so am I, and I will fight this fight with her as long as she wants to. I will be there every step of the way no matter how hard it gets. And pray everyday for a miracle.
  • katyana72
    katyana72 Member Posts: 5
    #3
    4theloveofmysis said:

    katy
    Im so sorry to hear that you are now on this road we are traveling. My sister was dx with GBM4 Feb 22,inoperable. Everyones story is diffrent. Some people do well and some people dont. There are sites that have stories of people that have survived for a long time. Start there...Get the affairs together. And be there for your Dad. Take it one day at a time. Somedays are better that others. Love, laugh, and make every minute count.
    I stopped looking the cancer up along time ago. Im a chemo nurse and know more that I want to know. Personally I dont want to know the end, dont want to thing about it at all, Wish I didnt know it was coming. I am so heart broken. My sister is my rock and my best friend. This cancer has ripped our lifes apart.
    My sister is a fighter And so am I, and I will fight this fight with her as long as she wants to. I will be there every step of the way no matter how hard it gets. And pray everyday for a miracle.

    Thank you for your reply. I
    Thank you for your reply. I truly know how you feel. In the beginning, I researched the cancer every day so that I'd know what the doctors were talking about when we went to his appointments and so I could compile my list of questions I wanted to ask the oncologist and the neurosurgeon. Now, I can't bring myself to research this any further than I all ready have. Whenever they change one of his medications, I research it to learn about side effects and complications; however, that's as far as I go. Instead, I've chosen to spend my time making memories with my father and to spend my time just being with him and surrounding him with love.

    I have been looking into getting his affairs in order, but that's something that I hate having to do. My mom can't focus on that right now, and my brothers don't even want to consider it. So, It's been left up to me to handle, and I hate that.

    I pray every day for a miracle...that my father will be healed completely of this dreaded illness and that God's will be done. Just as your sister, my father has been the rock in our family. My mother is the glue that holds us all together; however, my father has always been the strong one.

    I'll pray for you and your sister. No matter how things may seem or what the doctors may tell her, keep in mind that God is a doctor above all doctors and HE has the final say.

    Katyana

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