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Radiation necrosis from radiaton treatment
My husband has a rare tumor called ganglioglioma in left temporal lobe area. He has had 2 surgeries and done great. This last surgery required chemo and radiation and now the radiation has caused necrosis. He now has speech and reading problems. He had his first round of avastin. Anyone out there ever had this type tumor…
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Birthday Anxiety
On March 10th I will turn 27. I am not concerned about the age but it is difficult to get excited about the special dinner plans with family and friends when I am thinking how many more of these will there be? I don't have a timeline hanging over my head but I think of the day when we face the birthday when I am ill or not…
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cdolive4
I was reading a post of yours that said your husband would be going for an MRI soon. I just wanted to say I will be praying for him. God Bless!
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Has anyone had this treatment? Treating cancer with electric fields
I just viewed this in TED. Anyone familiar with this? http://www.ted.com/talks/bill_doyle_treating_cancer_with_electric_fields.html Thanks
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Our ever-evolving situation.....
Here's what's been going on with David: Back in Dec. 12/13-16 David had a BBBD treatment that had seriously negative side effects. Because he had such a bad reaction, he was taken off the BBBD protocol. It took him until the end of January to recover enough to attempt another, less harsh chemo treatment. 1/23 David was to…
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Avastin and back pain
I have been on Avastin since August 2010. I have been tolerating it really well. Lately, I have developed a few symptoms that I am not if they are related to the Avastin or something else. I started having pain in my back about 3 months ago, between my shoulder blades. Then about 6 weeks ago my feet started hurting when I…
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Back in the hospital
Man, we just can't catch a break here. David started having a really bad pain in his butt cheek. Weird, huh? The nurse (yes, you guessed it--the non-dog one) wanted me to pick up a prescription for a topical hemorrhoid cream but I didn't think it was hemorrhoids and neither did David. I was pretty insistent on having David…
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2 WEEKS POST OP, feeling very "slow" almost mentally retarted
I had my 2nd resection 2 weeks ago today. Things are totally different from the 1st time. They went in to remove the radiation nercosis (sp) and found more cancer,they removed it and added 8 glio wafers. Put me on decadron whuch caused me steroid psychosis. I never have felt so horrible in my life. They lowered the…
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recurence gbm before gliodel wafers
just to let everyone know my hubby will be in surgery on may 24 to remove a reccurence and to insert chemo wafers anyone know about what to expect?
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Confused, Do any of you understand this?
Feeling very confused since Tuesday. Let me start from Friday, the results from our first follow up MRI since surgery in August. We walk into the cancer clinic and sit to wait for our appointment. I notice people stare at us when we walk in. It is mostly people over the age of 50 every time we are in there. It’s almost as…
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Behreavement Center
I had mentioned in another post that I was going to visit The Behreavement Center, in our town, a service offered by our county Hospice. I was happy to learn that David doesn't have to qualify for Hospice Services in order for us to go there. I'm so glad my husband and I went. In searching for a counselor to talk to, to…
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Getting copy of MRI and medical records
How does one get a copy of a patient's MRI? I see that Cindysuetoyou got a copy of her son's. Also, a copy of the radiologist report? For all the MRIs our son has had, we have never gotten a copy that we could take home with us. Or the actual written radiologist report. Being the parent of an adult patient, we really have…
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Just wanted to share
Just wanted to share.I get these "Thoughts for the Day" and this one I wanted to share with my friends here.....Cindy, It may look familiar to you. :) The Whisper of God Thought for the Day: “We all go through difficult times. How we deal with the tough times when they come and how we make it through is all part of a…
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Seizures/MRI/Postponed Treatment/No Avastin/ROLLERCOASTER!!!
Okay, I guess you all know that we had plans for David to do intra arterial chemo on Wed (today) He was supped to be admitted on Tuesday for an MRI and a battery of tests, treated Wed., home Thursday, back on Friday for out-patient Avastin. We also had an appointment with the care management team/pallative care place on…
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Biopsy on Thalamus Tumor (Grade II or III based on multiple MRI reviews)
My 60 year old father was diagnosed with a suspected Grade II or III astrocytoma on his left thalamus yesterday. Needless to say this is a nightmare situation for me and my family. His only symptom at this point is mild numbness in his left hand and left side of his face. A couple of questions: -With the location being the…
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GBM 4 POSTED JAN 26TH, 2012
My husband was diagnosed with GBM STAGE 4 on Nov.1st, 2011. he was told 12-14 months prognosis. He had surgery on Nov. 7th. The surgeon went an inch into his brain and removed 90-100% of tumor. The tumor had affected his left side. They call it "left neglect". He has trouble seeing things to his left. His left hand had…
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My husband
My husband was 31 years old when he was diagnosed with his first brain tumor it was a stage 2 oligodendroglioma. I was three months pregrant and I was so scared but they were able to take the size of lemon tumor out and they did chemotherapy and radiation. After a year he was clear and we thought it would never come back…
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AA3 Recurrance
I am interested to see how many people on the boards here are AA3 survivors or know someone directly who is. Being that I am nearing 5 years with no recurrance, I am interested to see where others are in relation to me. If you don't mind, I am looking for the following info. 1. How long since the your initial diagnosis 2.…
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Not sure what is going on?
I don't know what exactly is happening with David. He's not answering my questions in a normal manner. When I ask a question or talk to him, his response time is slow. It's only a matter of seconds but it's not normal. If I ask more than one question, he doesn't even answer. Like if I say, "Why is the puppy scratching on…
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Question for Beckymarie
Beckymarie: Can you tell me how many cycles your husband had with the Temodar before it failed? Then, after that, he was put on Avastin alone, right? You had said that he tolerated the Avastin well, but eventually, the treatment failed. How many quality months did it give him?
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Astrocytoma inoperable
Hello my boyfriend is 23 years old and just got diagnosed with a brain tumor astrocytoma. It is to big to operate on and also on top of his thalamus so its basically impossible to take out. We are waiting on his pathology results to see what grade it is. He was having mild seizures and is now taking 500 mg of keppra to…
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A question for Astrocytoma grade 3 survivors
I go to my appointments with my boyfriends mom or my dad so I dont feel comfortable asking my dr.s this in front of them. Has anyone else lost completely lost their sex drive?
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My MRI was clear!
I went for my 3 month follow up at UAB Wednesday the 18th, and the Dr. said that everything looked better on the MRI than it did the last time. There was a small cyst on the MRI that showed up a few months after my surgery in 2009 that they have just been watching, and he states that it even looks smaller. There is no sign…
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GBM SURVIVOR - PHILIPPINES
Our daughter at the age of 22 diagnosed with GBM at the Chinese General Hospital here in Manila, Philippines on 1st October 2011 based on the results of CTSCAN & MRI. A combination of Linear Accelerator and Oral Chemotherapy (Temozolomide / Temozam)have been given by the Neurologist & Oncology. For an estimated 33 therapy…
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Just wanted you to know you and David are in my thoughts!
Cindysuetoyou, Just wanted you to know that you and David are in my thoughts and I said a prayer for him for his appointment tomorrow. God Bless!
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Glioblastoma Multiforme
My dad was just diagnosed with Glioblastoma Multiforme. Is there anyone out there with a success story or some knowledge on this? Please help!!! My dad needs some hope and some suggestions!! Thank you, Erin Kolster
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Speech Deficit
Antiquiimom and Surviormannc have both posted about speech deficits. Our son (age 34, dx AA3, 4-13-11, inoperable) also is dealing with this, among other deficits (gross and fine motor). His tumors are located in the cerebellum. I think that the speech impairment is the hardest to deal with as it is very isolating for him.…
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living independently?
Well, here's where we are at......David is going back to OHSU next Tuesday. He will be admitted and get a bunch of tests...an MRI, bloodwork, etc. Then Wed. he will have intra-arterial chemos--two via the femoral artery up to his carotid, and one chemo thru his port. Then he will be discharged on Thursday, and come back as…
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Can Anyone help me understand these findings?
My husband had his MRI in December and they told us everything was the same as the last MRI. The report wasn't ready so we had to return later to pick it up. When I read the MRI it said some pretty disturbing things, to me anyway. Although it says findings reflect post operative and or post therapy changes, it also said…
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Bureaucracy
The lovely world of insurance company denied my sister's second chemo agent Xeloda. My sister has an anaplastic astrocytoma with no mgmt mutation that would make it sensitive to Temodar. (well 25% of it is according to the pathology stain). The tumor analysis showed that it could be sensitive to Xeloda. Could is the word.…