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I'm new here. AA3
I'm 61 yrs old however am a world ranked show jumping rider. I was showing horses in mid July of 2012 and just stopped speaking. I took 3 aspirin thinking I was stroking out. I continued to ride 2 horses then called 911. Aug 1 I had brain surgery and refused complete removal of the tumor(about 80% removed) which would have…
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ADULT Diffuse Intrinsic Pontine Glioma
Hi, anyone out there dealing with this rare insideous monster? Was diagnosed 9 years ago with waitful watching due to location. Looks like it finally woke up. Would like to swap stories, symptoms, treatments, etc. Thanks
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CCNU/ Lomustine
Can anybody tell me about CCNU? Is it truly a last resort chemo? What side effects? My husband had no signs of recurrence.
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KANZIUS TREATMENT(new treatment for cancer without any side effects)
recently, I just found out that there is an ongoing research about treating cancer without any side effects. I hope that this treatment works because we all need it to. http://www.kanziuscancerresearch.org/ the site's last update said that the research is in it's most critical stage, Getting the fda'a approval for human…
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Cancer Pesearch Projects - Are We on the Wrong Track?
I lost my Father to Brian cancer a few months ago and was doing some critical thinking on the available treatment options and the ongoing reseaches and wrote the following blurb below. Please feel free to give your feedback on my disucission below : Cancer Pesearch Projects - Are We on the Wrong Track? Most of the research…
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It's been one year _
CindySue, Just wanted to check in , wishing you the best on this anniversary date. I know it has not been a easy journey for you and your family, but hoping the wonderful memories of your son David remain in your heart with joy and not sadness. I appreciated the caring and compassionate manner in which to handled David's…
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Avastin how long?
If anyone could give me information on how long your love one has been on avastin before it stops working. My daughter has a GBM and has just taken her 5th round. The doctors say the MRI is great, but the side effects knock her down for 6 days after. I know this disease is not easy to predict, but any help in knowing what…
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Swelling
My friend who is 55, was diagnoised with Glioblastoma multiforme grade IV and inoperable back in May 2013. He seemed to be doing really well and announced he was taking back control of his life and didn't need his sister or I around. We went through what seems to be standard for everyone, radiation (6weeks), Chemo (42…
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Glioblastoma Grade IV help
Hello everyone, I have a childhood friend that has been fighting GBM IV since 2004, (I just found out about this within the last year.) and she's been through surgery, chemo, radiation, clinical trials, and investigational drugs. I'd like to help her as well, but I don't know much about the disease, side from what I've…
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My dad has brain cancer
Hi, my Dad was diagonsed with a brain tumor Spring 2012. He had surgery, radiation and chemo therpay. He was clear for a couple months until the tumor was back and had spread to other parts of his brain. He is currently on some other kind of treatment. I don't know too much, because I find it hard to talk about and I don't…
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braintumour
hey i need u to guide my most loving one(uncle) has brain tumour which arose after year ha having brain tumour ...its of roots kind ...doctrs in malaysia operatr him yesterday but they stopeed operation after removing 40%of tumour they said tht there is blood loss nd bp got too low thts why they had to stop now today uncle…
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My mom has GBM 4. Need advice on treatment
hello everyone, Sorry for grammatical errors I am using a phone my mom has had a brain tumor since 2002. She was 29 years old when wage was diagnosed. Every day or every day she has seizures that affect her left side or her body. Her tumor had stood the same for over 11 years! She had an astrocytoma.. Late december of 2012…
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gbm 4 side effects
Haven't posted for awhile. Wife had gbm 4 tumor removed on April 28th. Went through radiation and chemo for 42 days. Off for 28 days and then had second treatment of temodar 250 mg. She has been off temodar for a week now, but sleeps most of the day. Eats 3 small meals but then back to bed as she is so tired. Everybody…
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Astrocytoma Grade II Questions
Near the end of July my aunt was diagnosed with an Astrocytoma Grade II right frontal lobe tumor. She had surgery but they couldn't remove all of it because the doctor said it would have left her blind if they had. At this point, radiation is being discussed. Immediately following surgery she had no short term memory at…
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Lomustine (CCNU)
Looking for anyone that has been treated with a chemotherapy drug called "Lomustine" or CCNU. My 30 year old wife just had her second surgery to remove an anaplastic astrocytoma tumour (assuming it is still grade 3). She was diagnosed in 2006, followed by radiation and chemo. In 2006 she was on the temodar. After 3+ years…
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Other options with GBM
My son was diagnosed with GBM at the age of 19 in December 2011. He was diagnosed after a massive brain bleed, and had to learn to walk again. He lost the use of his left arm, and walked with a limp as partial muscle signalling was lost from the brain. After underwent chimo and radiation for 6 weeks, then decided to stop…
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Ketogenic Diet Arts Project
Hi. I have a grade 2 low grade astrocytoma and I am using the ketogenic diet to help with my epilepsy. There is also stuff coming out saying that it can help treatment of cancer. Anyway, I am putting together an arts project to celebrate the successes that folks have had with the ketogenic diet. It is free, inclusive and…
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IDH1 Development
Anyone else see this? Pretty exciting. http://www.webwire.com/ViewPressRel.asp?aId=180575#.UkMGNbx5iqQ
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CNS lymphoma prognosis, median survival time, and relapse statistics?
Hi all, I am new to this forum. I am from Stockholm, Sweden, was born in 1944, and I was diagnosed with CNS lymphoma in March 2012. I got three treatments with cortison, cytostatica (methotrexate and others) and antibodies, and so my tumour vanished. My bone-marrow stem cells were then harvested and frozen, and in August…
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UCLA allo CTL clinical trial
Has anyone out there been on this trial? Did you have good results? I think there are only about five of you out there in the world that have been on this trial... The trial involves intratumoral adoptive transfer of alloreactive CTL that are directed against patient HLA antigens present on brain tumor cells but not normal…
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Tocagen
Anyone have any experience with the Tocagen trial?
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GBM IV
hello every body, This is my first post. I am looking for a little guidance and help with my ongoing treatment. I live in England and the Americans seem to be a little more informed and open about this cancer that I have. Any ideas or knowledge on how to beat this invasion of my body will be most gratefully received. I am…
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avastin for gbm
Good morning every one. i was just told that i am getting on avastin. in may i had a tumor and got syber knifed. and now two months later i have three more. they are taking off the temodar. and instead of surgery they are doing syber knife again putting me on avasin. i guess my body is not working with the temodar. i have…
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GBM stage 4
MY husband was diagnosed 10/24/12 treatment radiation Temador after last dosage 18 day later Saw some symptoms, MRI confirmed its back Now we are waiting to go into a study. Has anyone had it come back so soon?
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Son's/Mother's/Caregiver's
This was sent to me by a friend- For all of us who have a wonderful son that you love with all your heart! :o ) I'll always need my son no matter what age I am. My son has made me laugh...made me proud...made me cry...hugged me tight...seen me fall...cheered me up...kept me going strong...and driven me crazy at times! But,…
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GLIOBLASTOMA MULTIFORME STAGE FOUR. VIOLENT MOOD SWINGS AND BEHAVIOURAL CHANGES
Hello All, I write this down to you at an un-godly hour at approximately 3 am United Kingdom time!I guess I am up scouring the internets sources on Glioblastoma Multiforme, trying to grasp and understand each fine detail. My name is Ruby, I am 27 years old, but those silly details do not actually matter- but what I am here…
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Large Inoperable Tumor
My mother who is 54 years old, has been having certain problems communicating for probably the last year and a half and she kept a lot of things, as far as emotions go, to herself. Everyone suspected that because of that, it was an emotional thing due to what we've been through in the past two years (our house was flooded…
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I HAVE A DREAM...
...that one day we will have a pink heart shape pill that cures all cancers and our biggest complaint will be that it comes only in 6 different flavors. Please, join me in this dream and until then god bless us with nothing but happy hopeful days. Laz
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MOODS
GOOD MORNING EVERYONE I AM GIOBLASTOMA LEVEL 4 NEWBEE. I AM TAKING KEPPRA AND DOING A DOSE OF TEMADOR 400MG 5/23. HAS ANYONE HAD ANY VIOLENT MOOD SWINGS WITH ANY MEDICATION? I AM NOT A VIOLENT PERSON AND SCARED MYSELF TO DEATH WHEN I WOKE UP SATURDAY MORNING AND REALIZED THAT I DESTROYED THE GARAGE AND KITCHEN IN MY HOUSE.…
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Pregnant after temodar?
Just wondering if any females on this board have experience with getting pregnant after temodar? I am 26 years old (single) and am going to be starting chemo + radiation in 2-3 weeks. Initially I was told just radiation so I saw a fertility specialist but there was nothing to do now. Now they have changed their minds and…