Astrocytoma grade III and my dad. Please shed some light, I'm new here

Mazostyle
Mazostyle Member Posts: 3
in Brain Cancer #1

hey everyone my name is mike and I am painfully writing this post about my best friend, my father. Here's his story:

On 9/28/12 my dad was taken to the hospital after having a seizure. After a couple painful weeks and a biopsy later, the cause of the seizure was grade 3 anaplastic astrocytoma.  4 small tumors with the biggest one measuring 1 and 1/2 cms. dr said due to their location they are inoperable. this was just 4 months after his sister was diagnosed with GBM (Which his dad also died from) and they say its not genetic, I'm worried. Anyway, during his 6 week radiation treatment, he got pneumonia and the dr didn't want him taking chemo. Once treatment was over he is now on his first week of chemo (5 days on 28 days off) the chemo is temodar.

My dad was as healthy as ever, we would run 4x a week some times. Anyway the follow up MRI after radiation showed tumors were not only still there but grew bigger. The biggest is now 4.2cm, about triple sized. in the past few weeks my dad has lost motor skills and memory and can't maintain a conversation. All this is just 5 months! Is there any hope this temodar will shrink these tumors and I get my dad back, or is he already gone? Is there any other trials or anything I can look into? Please help, this is killing me. Thanks

Comments

  • djwill5
    djwill5 Member Posts: 13
    #2
    Sorry to Hear

    I'm sorry to hear about your dad.  I am in a similar situation with my husband.  He was increadibly healthy until surgery.  Something happened, the surgeon "nicked" something and he lost his entire right side.  We are opting not for any radiation or chemo, we're going the alternative route.  Hope the best for you!

  • Mazostyle
    Mazostyle Member Posts: 3
    #3
    djwill5 said:

    Sorry to Hear

    I'm sorry to hear about your dad.  I am in a similar situation with my husband.  He was increadibly healthy until surgery.  Something happened, the surgeon "nicked" something and he lost his entire right side.  We are opting not for any radiation or chemo, we're going the alternative route.  Hope the best for you!

    What is your alternative route?

    What is your alternative route? A catscan taken yesterday shown the tumors to be larger than one week ago. The doctors say there is nothing left to do for him. I hate this.

  • djwill5
    djwill5 Member Posts: 13
    #4
    Mazostyle said:

    What is your alternative route?

    What is your alternative route? A catscan taken yesterday shown the tumors to be larger than one week ago. The doctors say there is nothing left to do for him. I hate this.

    Alternate

    We are using the book "Outsmart your Cancer", it is full of alternative methods, that have been proven (of course they don't all work for everyone).  We have changed our diet, mostly vegan, no sugar and no bleached flour.  We are also using Protocel and PawPaw.  I'm not sure how well it's working, as we aren't having a MRI until the 6 month mark.  We're only a month out, so 5 more to go.  Good luck!

  • Mazostyle
    Mazostyle Member Posts: 3
    #5
    UPDATE: AVASTIN

    Dad has had his first treatment of Avastin as prescribed by Dr. Mellinghoff from Sloan Kettering. Immediate results have been seen. Just one week into his first infusion, he is walking on his own, maintaining coversation - still definitely weak, but he's come so far from where he was. ANy others have success with the Avastin? I am optimistic

  • Raani01
    Raani01 Member Posts: 70
    #6
    You are such a loving son!

    Hi Mike,

    Ilost my husband to GRADE 3Oligidendroglioma on July18,2012. Avastin is tricky.Please read my old posts about avastin (you may find it by searching my name).

    I am happy to hear the Avasting is working for your dad. I heard lots of good stories with Avastin .unfortunately, many bad ones also. It was bad for us.my husband got brain bleed after 1infusion. In any case, intentionally enoy your time with dad and make memories.What ever is the outcome of the treatment, good memories are always good.

    Take care!

    Raani

  • Thess3_13
    Thess3_13 Member Posts: 5
    #7
    Mike, I feel your pain.  My

    Mike, I feel your pain.  My Dad was dx with AA Grade 3 right before Christmas, his is also inoperable.  He has finished his radiation treatment but has severe burns and had to stop the Temodar because of low platelets and a very low WBC.  I pray your Dad continues to have good results with the Avastation.  I will look into that, it hasn't been presented as an option. 

  • salem1966
    salem1966 Member Posts: 9
    #8
    Mazostyle said:

    UPDATE: AVASTIN

    Dad has had his first treatment of Avastin as prescribed by Dr. Mellinghoff from Sloan Kettering. Immediate results have been seen. Just one week into his first infusion, he is walking on his own, maintaining coversation - still definitely weak, but he's come so far from where he was. ANy others have success with the Avastin? I am optimistic

    Avastin

    My 37 yr old son had a malignant brain tumor removed in May 2009.  He had 30 treatments of radiation & took Temador by mouth 5 days each month.  After several months his MRI showed new cell activity.  He took several treatments of chemo by IV & Avastin.  He continues taking Avastin as a maintenance treatment every 3 weeks.  He has not had any new cell activity in 2 yrs.  However, he has had bad side effects from medications.  He had a mini stroke due to the Avastin, & brain swelling from the radiation.  Side effects from radiation can happen years after treatment.  Doctor thinks that cancer would re-occur if Avastin is stopped.

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