glioblastoma

My husband was getting Avastin treatments for 8 months. He opted to end treatment in early May. He has deteriorated to the point where he requires full time care. Does anyone have experience with glioblastoma and stopping avastin treatments? Basically, I know my husband is terminal and the dying process is agonizingly slow.

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Hi sultana,
I have an astrocytoma and have refused any form of chemo/radiation and my tumor cannot wholly be remove by surgery so I do not have personal experience with Avastin as I've not had chemo. My best friend also have a brain tumor and was taking Temodar for sometime. It made her so much worse and was not helpful at all. Eventually about a year ago she stopped taking it and is doing a bit better but now suffers from different symptoms as a result of the meds. He headaches are worse than they were, she has no appetite and can't keep food down most of the time. She used to weigh 110 lbs and now weighs 75 lbs, She did see a man who was trained in Chinese acupuncture which helped some but not significantly.

Have you thought of doing anything away from the mainstream western medicine to try and help your husband? When you become what I call a "medical refugee" meaning the doctors tell you they cannot do anything else for you there are still options... Let me know if you are interested in hearing about what I am doing and I am happy to tell you God willing.

- blondellie

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Thanks for your advice. My husband was diagnosed over three years ago with an anaplastic astrocytoma. He has had two complete resections and was on temodar and had two rounds of radiation. The second round of radiation was a poor decision since it caused irreversible brain damage. The avastin actually shrunk his glioblastoma, however, due to the damage of the radiation, he was deteriorating neurologically and his quality of life was poor. That is the reason he stopped the avastin. I have heard that for many people avastin is like a miracle. In my husband's case it did do what it was supposed to do, however, his neurological deficits were so extreme, it seemed pointless to continue a treatment that was extending his life, but with no real quality of life. He is currently receiving hospice care and is terminal. The dying process is agonizingly slow, although he suffers no pain, and for the most part, had no cognitive ability to understand what is going on. It is most difficult for those who of us who have to witness his decline and imminent death. Good luck to you and your search for an alternative treatment.

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Was tumor free for 3+ yrs. Glio returned a mon. ago. Had 2 proton radiation treatments which is a direct beam to the tumor without touching healthy tissue. I feel much better but won't get results till next week. The tumor was small and relatively well defined. May God's grace sustain us all through this battle. Robin

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I wish you the best. Brain tumors are nasty business.

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Hi sultana,

Your's and your husband's story is so sad :( I pray that God makes everything easy for you both and that you are both able to find peace with what is going on in your own ways.

I thank you for sharing your story. I am very fearful of turning myself over to the neurosurgeon and neuro-oncologist until I have exhausted all other options for fear that the brain damage from the surgery/radiation and ill effects from chemo will be life changing and irreversible.

You and your husband are in my thoughts and prayers.

- blondellie

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My husband is now also terminal. Hospice is stepping in. He is also not cognitive... well very little.

He has little pain at this time but I was wondering if I could talk to you about the 'end process' and what is going on for you... what I can expect. I know its hard to talk about.. thank you.

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From what I have been told by several doctors is death is usually preceded by a coma. Untimately the tumor takes over the brain's automatic functions such as swallowing and ultimately breathing. At this point, my husband needs round the clock care. He is mentally confused, although he does have occassional flashes of clarity. Fortunately for him, he is in no physical pain (the brain itself feels no pain), and he is blissfully unaware of his condition. He has no idea that he has a brain tumor at this point, let alone that he is dying. The hard part is being a witness to all of it. He is currently in an assisted living facility where he receives both hospice care as well as the highest level of care at the facility. Although the doctors can't or won't give me some sort of time frame, it appears that with each day there is further deterioration. From the moment my husband was first diagnosed with his first brain tumor three years ago, we both understood that, ultimately, it was a death sentence. In his case, he was fortunate to have responded initially to radiation and chemotherapy. He did have a full year and a half of quality life. By all accounts, he has outlived all predicted expectations of survival. (the median survival rate is 12 to 15 months from initital diagnosis.) However, the vast majority of primary brain tumors are fatal, despite all the new advanced treatments, I hope this was helpful.Feel free to contact me should you want more information.

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Yes I feel my husband is at that point. He also needs round the clock care. His tumor has taken over... he doesnt eat or drink, Very very mininal anyways, it amazes me his body even survives on his small amount of intake. He is extremely confused, although he too does have a few flashes of clarity. Thankfully he also does not feel pain.That is the ONE good thing about this. I now believe he is unaware of his condition. He seems extremely peaceful for the first time in a long time. I think its because he doesnt know what is going on and hes not worried about anything anymore... he just sleeps all day and sometimes will wake up and smiles and talk jibberish. I love him SO MUCH it is so so hard to see this, to watch this, to live this. I miss him already.

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I can absolutely relate to your experience. I agree, the fact that there is little or no pain combined with the fact that the afflicted don't really know what is happening make it more bearable. I feel in so many ways that the man I knew and married is long gone, that I have been grieving that loss for well over a year, and what is to come will be a relief. Care givers in these very specific situations when the sick person suffers a multitude of neurological deficits are, I do believe the the ones who bear the weight of it all. This is a truly horrible disease, and I think only those who actually live through it understand the depths of its misery and suffering. I am thinking of you as we both are seemingly living this agony in a parallel existence.

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Hello Sultana
My daughter had gliomablastoma and was on Temador and was going to try the Avistan she was diagnosed in Sept 08 and passed away in August 09. She was 33 years old. I will keep you and your family in my prayers it is a very hard illness. Take one day at a time.
Mariann

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Thank you. Losing a husband to this disease is devastating. I cannot even begin to imagine what it must be like to lose a daughter.

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Hi Mariann,
How are you? I'm hangin' in there. I was 6 mon. shy of my5 yr. mark when the tumor returned. It was very small and well defined so they treated it with proton radiation which is target specific without affecting surrounding tissues. I will begin maintenance Temodar in Dec. to keep the tumor at bay, maybe. I have noticed this time that strengthening exercises and walking are not maintaining my muscles or endurance. But I'm able to get out and do things so I am grateful. My son is now home from the military. He will be going go school next fall. He is a real blessing to have at home. He keeps me positive and hopeful. Good talkin' to you. Robin

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