Brain Cancer
Discussion List
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Side Effects of Temodar
My husband, 59, was diagnosed with GBM IV in the left temporal lobe Sept. '03 and had resection Oct. 1st. Neurosurgeon felt he got the whole tumor. 6 weeks of radiation followed, ending Dec. 16. My husband had a post-radiation MRI in Jan., and it showed no tumor. Neurosurgeon and neurooncologist were very happy with it.…
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Anaplastic Astrocytoma Level III
I've been reading your messages. I pray you all find the faith and hope that will bring you wellness and peace of mind. I am 39. Last year I was diagnosed with a brain tumor. The tumor was resected in July 2003(95%) and the pathology reported that I had an anaplastic astrocytoma level III in 20% of the tumor. I began 6…
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Avastin
Hi Everyone My son has AO GR3 Brain cancer. In January they found it and it was the size of a common pin head. He was on temolozide for 2 months and it has spread tremendously almost looking like a hand over your brain with fingers reaching down. He was given 6 months or less to live. They are trying him on Avastin…
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Hi all! New to the site - glioblastoma
Hi all, I'm a 37 yr. old female who was diagnosed with a Glio in February. Due to the location, it was inoperable, but I did the Temodar (did it make anyone else throw up as violently as I did?) along with the radiation (my hair fell out in a nifty "Mohawk" pattern), and overall I was very scared but optimistic that this…
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Living with Side Effects of Full Brain Radiation
My husband was diagnosed with Primary CNS Lymphoma 13 years ago and we were told he would not survive more than 48 months. He received many different kinds of chemo (I remember vincristine, methotrexate, procarbazine - and there were more) - and full brain (and eye orbit) radiation. The good news: HE'S ALIVE!!!! The bad…
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Decadron effects
My husband recently stepped down the dosage and stopped taking Decadron ,under my doctors orders. He took it for 3 months after having a meningioma radiation and swelling that caused seizures. He has back and hip pain. He can barely walk. if anyone else has had these problems how long did they last? What can he do to get…
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Germinoma
Hello! My son was recently diagnosed with 2 germinomas...one on his pituitary gland and one on his pineal gland. He was 10 at diagnosis on 10/2017. The symptoms that led us to the ER were a headache and vomiting. After a CT scan we learned about the tumors and were sent to Vanderbilt Children's Hospital. He is now 11 and…
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Coming up on my last days of treatments. My story and experiences.
Well i currently only have 4 more radiation therapy treatments, and then i am finally done with all my treatments and i can go back to my "Normal" life. These past couple months have been pretty tough going from a perfectly healthy athletic 15 year old boy to having discovered i had brain cancer. I would like to share my…
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Grade 2 Diffuse Astrocytoma
I am 38 years old and recently diagnosed with a Grade 2 Diffuse Astrocytoma. I had no previous health issues and went to bed feeling fine one night. I had 2 seizures in my sleep and woke up in the hospital ICU where they diagnosed me with a 6 x 5 x 5 cm tumor. I am currently 6 weeks post op from having a craniotomy with a…
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GBM Brain Cancer
My father is diognosed with GBM, 2 tumors with size 7cm in temporal region and 4cm in optical region. He was completely fine 15 days back. Doctor has reduced one tumor through surgery which is now 5 cm. But now post the diagnosis and surgery his health is depleting rapidly. We have been told that he has 6 months to 2 yrs.…
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Your diet - 3 small additions which might help
In this talk, Brent Reynolds, PhD discusses how three natural substances used in combination slows tumor progression. Data is presented. They are discussed at about 15 minutes into talk. Recommend the entire 25 minutes though.. https://www.youtube.com/watch?v=D6RW1fv3KD8&t=914s They are EGCG (green tea), Curcumin…
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glioblastoma chemo
Hi, I've been helping my x husband, diagnosed with glioblastoma. He's had surgery, then then chemo radiation combo, six weeks. Then four weeks off all treatment. Then 5 days chemo only. Now for my question. The chemo Dr has him starting on chemo again, higher dose, but I'm confused about the 28 days. Is it 28 days from 1st…
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Glioblastoma
My Mother is suffering from GLIOBLASTOMA MULTIFORME, being diagnosed on 18/11/2017 by biopsy from NIMHANS, INDIA. She was having excruciating headache associated with vomiting, 1 month back. Her MRI Scan of Brain report showed High Grade Glioma (5x3.6x4.3 cms) on 8/11/2017. She underwent operation (Craniotomy with Surgical…
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dexamethasone - negative effects: What does your Doctor say?
In this short video Prof. Longo discusses the negatives of dexamethasone at 11:30 through about 13:40. Recoommend the entire 20 minutes though. limited fasting, or mimicking fasting, seem to be very promissing as an adjunct in limiting side effects and making chemo and radiaion more effective…
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Neuropathy
It has been a little over two (2) years since my Chemo treatment. I am still experiencing a significant amount of Neuropathy in my fingers and feet. I thought by now that the Neuropathy would be gone or atleast not be so intense. I recall my medical oncologist saying whatever side effects I still have in a years time, most…
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Diet for Brain Cancer as an adjunct therapy
An excellent science based resource, written by a nutritionist (Miriam Kalamian) with personal brain cancer experience and who hass advicec 100s, including many physicians. https://www.dietarytherapies.com/ A 2017 talk by Miriam https://www.youtube.com/watch?v=LMsaejxm6iI&t=1585s . .
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Non-Toxic compliment to standard therapy - Updated
Prof. Seyfried may be known to some here for his work (as a researcher) with GBM patients (and others) in applying strategies to suppress glucose uptake in cancer cells In this short 2017 talk Prof. Seyfried discusses an updated metabolic strategy, which he calls Press-Pulse. He explains it starting about 13:15.…
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Please help,need guidance, advice, opinions, anything
Where to start, this is such a complicated and long story. My mother, my best friend, my absolute everything was given four months to live yesterday with radiation on treatments on brain. The last several years I've watched this women suffer and be put thru hell and she has fought and fought! My mom is 63 years old. In…
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Optune for Glioma Tumor
Hi. My name is Connie and my father in law was recently diagnosed with a glioma tumor. He has had surgery and been through radiation. He is continuing to have chemo via pills. He was given an option of using this Optune head thing and they are hoping for more "real people" experiences with them and I just can't find much.…
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Adult Medullarblastoma and aftermath
In all respects, I am extremly lucky and I know this. I was diagnosed with Medullarblastoma in October 2016 at age 31. I’ve had muiltiple surgeries will have finished my chemo a year in April. Before cancer, I was a very active person- I have a four year old, I fostered cats, I enjoyed yoga very much, and I was an avid…
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dexamethasone withdrawal?
Hi Everyone, My mom was diagnosed with stage IV glioblastoma multiforme in May, has now had two surgeries, radiation and chemo.She is only 56 and was very healthy before all this happened. She had a moderate stroke during the second surgery so now has a very difficult time communicating....along with vision loss and other…
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Nsclc brain metastases
Hi My mom right lower lobe lobectomy in Apr14 . After lobectomy she's taken chimo & radiation treatment. No problem up-to Dec 17. But last month little headache & vomit then we going to PET CT. In PET CT right frontal lobe brain metastases lesion around 16 mm. We going to doctor & doing Radio surgery. Now anyone…
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Tumor on Pineal Gland
Hi, I'm looking for other people that had a tumor on their pineal gland.
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Grade 3 Anaplastic Oligoastrocytoma Diagnosed.
Hi, My father is 50 yrs old & has been diagnosed a non malignant Grade 3 Anaplastic Oligoastrocytoma in left brain. He got operated on 30th Nov. & is recovering well at the moment.Visible Tumor has been removed completely & he has been advised to undergo Radio & chemo therapy.Dr. says regardless of the fact that it has…
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Nongerminomatous germ cell tumor
My son was diagnosed with a NGGCT of the pineal gland in 2009, he was 13. Happy to share stories if anyone else has had similar. I cannot find anyone in Australia who has had it.
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New DIPG Diagnosis
Hello. I was diagnosed at the beginning of the month with a Grade 4 Diffused Intrinsic Pontine Glioma (aka diffused midline glioma). It's about halfway up the brain stem and into the thalamus. I start radiation and chemo pills next week. Looking for other people's experiences with treatment, resecution, etc. Thank you!
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Brainstem Glioma
Are there any brainstem glioma survivors out there? My son-in-law in 31, and was diagnosed in September. He has done radiation, chemo, and natural supplements. What else can we try? We have been told this is a death sentence. He and my daughter have a 1 1/2 year old and a 4 year old.
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DIPG
My daughter was diagnosed with a DIPG 1-26-2012 at the age of 21. I am just looking for people that may be going through the same thing...We were told that is very rare for someone of her age. FearlessMom
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Adult fight with DIPG
Hi. Just to add to discuss my sister age 22 is diagnosed with a dipg and i am not able to find the same case in previous three months , if any one is in the same fight please help and share
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My second husband with Brain Cancer :Inoperable DIPG
I am looking for anyone who has dealt with adults with DIPG. A lttle background, I have a deceased husband who passed away after fighting 1 year and 10 days with GBM IV in 2002. My current husband has been diagnosed with dipg, even though it is supposed to be low grade, the hystology suggests aggressive form. According to…
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