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Post by saraandmark on Sept 19, 2014 0:09:43 GMT -6
My husband had a benign astrocytoma 5 years ago which caused drop foot in his left foot. He had a biopsy but it was not able to be removed. He had radiation and chemotherapy and it was in avarice for the last 5 years. This June he had extreme back pain and headaches and drop foot and his MRI showed that the tumor had metastisized throughout the entire spinal cord and head. He quickly (3 weeks) lost almost all function of his legs and bowels and bladder. He did radiation and chemo and is on his second round of chemo. We have 3 young children. He and I are losing hope right now. Can anyone tell us if he has a chance to survive or is this just giving him time. We would rather just enjoy our time if we would know there was no chance.... Rather than going to doctor after doctor. Anyone have a success story ?
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Post by JosephGallo on Sept 19, 2014 7:23:44 GMT -6
Hello,
I have been living with an astrocytoma grade III for 2 years and 8 months. I had surgery followed by radiation and Temodar (chemotherapy) and lastly a drug named Avastin (which worked the best). In my opinion Avastin is the best drug right now. Your husband should give it a try..........
I do recall reading of someone who is living with a high grade SCT for 12 years.
I have been told there is no cure for our disease. It can be managed at Best.
Good Luck to you
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Post by saraandmark on Sept 19, 2014 11:02:47 GMT -6
Thank you for replying. Is avastin a chemo drug? He takes temador, and tamoxifen and once per week of carboplatten (not sure of spelling).
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Post by saraandmark on Sept 19, 2014 11:07:21 GMT -6
I looked up that drug and I will call his chemo doc today to find out if he should try it.
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Post by leks on Sept 19, 2014 14:32:40 GMT -6
Their are some clinical trials where they are using cannabis oil on glioblastoma multiforme (brain tumor), astrocytoma is very similar to GBM..
Google rick Simpson oil, also gw pharmaceuticals GBM trials.
Good luck to you guys.
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Post by youngyang on Sept 22, 2014 14:28:21 GMT -6
Hello,
I was diagnosed with an astrocytoma grade I 6.5 years ago, and had surgery immediately following the diagnosis. Some pieces of tumor was not able to resected due to their size and position. I then had radiotherapy and chemo (Temodar and Avastin) about three years ago because the doctors suspected the tumors were becoming malignant. None of them seemed to be working. I think chemo was only useful for high grade tumors (grade III and IV). For my case I don’t gain big benefit since I think the doctors misdiagnosed my tumor as malignant.
Why is surgery not an option for you? Have you talked to other surgeons about your options? I’ve heard lots of stories about people regaining functions after a successful surgery. Good luck, don’t lose hope.
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Post by JosephGallo on Sept 22, 2014 20:37:00 GMT -6
I'm having surgery this week to de-bulk my high grade tumor. The tumor is 3 x the original size (T 11 - L2) now and causing me many issues. I received 3 opinions from 3 different tumor boards in teaching hospitals. Two of the tumor boards recommended radical surgery (remove spinal cord from t11 - downward or radical de-bulking) I will be paralyzed BUT the hope is to extend my life.
I chose to stick with my original neuro-surgeon. He gives me a 25% to 50% chance of NOT being paralyzed. I will resume chemo 4 weeks after surgery. I'm not ready to be paralyzed and pray my very gifted surgeon is successful. I truly believe there are only a few surgeons talented enough to perform these difficult surgeries. Keep searching and fighting. Good Luck to You.
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Post by saraandmark on Sept 23, 2014 18:07:56 GMT -6
We were told by the two surgeons that looked at him (one being the surgeon that did the biopsy of the original astrocytoma 5 years ago) that it was not an option for surgical resection because it was metastatic disease (cancer cells not actual tumors) that are spread throughout the entire spinal cord and into the head. There would be no clear boundaries of cancer cells. There are tumors in his head in the menages that they said if we got to a point where they were the bigger problem then they would consider surgery but for now the spinal cord is the problem. Does that make sense?
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Post by youngyang on Sept 24, 2014 12:35:39 GMT -6
Where is the original tumor (benign astrocytoma) located? how do they tell the cancel cells without biopsy?
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