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Brain Cancer

GBM Survivor
I was just reading some of the posts in the brain cancer topic section. I noticed that people are lookiing for survival stories...well, I guess I am one! I was diagnosed with stage 4 GBM located in my medulla oblingata (brain stem) in January 2001. I was 6 months pregnant. Go forward 17 years and I am still alive and my…
gliomatosis cerebri
I have been reading your posts for a few months now and have been inspired by your thoughts. I am a 59 (almost 60 yr old woman)2 months ago I had a seizure at my work, and was ultimately diagnosed with gliomatosis cerebri, I have gliomas in all lobes of my brain. This is an unusual presentation since this usually occurs…
Diffuse Astrocytoma Grade II/Gliomatosis Cerebri -- anybody out there?
Hi, I was diagnosed with diffuse astrocytoma grade II (gliomatosis cerebri) in September 2009. Inoperable. We have found it difficult and confusing to understand the treatment options and prognosis. We eventually chose radiation therapy (whole brain radiation) and temodar. Radiation is now complete and temodar continues.…
Medulloblastoma
My son 7 years old diagnosed medulloblastoma 11/5/2017.Done surgery 11/9/2017 . The surgeon was able to remove it all . Pathology revealed classic medulloblastoma . Spine tap negative . .then 42 days after surgery he went radiotherapy IMRT 56 CGry 31 sessions 5 every week after 5 weeks rest he begin chemotherapy . With…
adult medulla blastoma
I am interested in making contact with any adult that has been diagnosed with madulla blastoma or caregiver who is connected with someone who is going through this disorder
Neuropathy
Hey I’ve been diagnosed with Medulloblastoma 5 month ago during this time I went through 5 cycles of Vincristine and a month of radiation. About a month ago I started to have side effect of chemo, that is neuropathy. Any tips with that? Been taking gabopentin for a month and very little results. Please help the pain is…
Astrocytoma Grade II
My 27 year old son just underwent surgery-resection for a right-frontal lobe tumor. No previous health issues. They think they got it all...Awaiting to hear possible treatment recommendations - dependent on agressiveness of tumor and liklihood of recurrence. Has anyone been through this that can help shed some light on how…
Brainstem Glioma
My 26 yr old son was just told he has a brainstem glioma. Not commom for his age and we are serching for treatment and getting many different opinions, Anyone been there?
Children survivors of Medullablastoma brain cancer
Hello - I'm looking for feedback regarding children that survived brain cancer with radiation and chemo. Any noted side effects 2 years later and how the child is doing in school. i now have a grandaughter in my care since September and it seems to me that she is unable to focus at school or at home and unable to memorize…
dexamethasone nightmare!
my husband is currently coming off of the steroid dexamethasone, and it is hitting him hard! sore hips and weakness are to expected, i hear. he has both. but he is sleeping all the time now. he is having trouble with thinking and speech... i'm sure some of you have had some experience with this drug. i'm asking if anyone…
Success stories wanted - Track records? Astrocytoma - Sea cucumber
Hi, My wife and I have been living with cancer for 7 years now. She was diagnosed in 2011. We have followed the advise of our medical professionalsto date. After initial surgery, and Radiation she is currently trying to continue (2nd year) with the temozolmide chemo, but white blood cells are too low. WE and are looking…
Daughter's AA3 Recurrence
My daughter was initially diagnosed jan 2014 when she had just turned 25, with a Right frontal lobe tumor. She had surgery the next day to remove most of it and then we sought out a 2nd opinion at Mayo Clinic. She opted to do radiation there and then PCV chemo. Due to radiation nectrosis, she had a second craniotomy early…
Gliosarcoma...doing it all and still dying.
My life partner of 12 years was diagnosed in November. He is 70 and was in fabulous physical condition with no comorbidities. Had surgery at Hopkins. Grade 4, unmethylated gliosarcoma in the frontal lobe. Chose to return to local medical center for radiation and TMZ. We keep waiting for improvements, but aren't seeing any.…
Grade 3 Astrocytoma- Inoperable
I have a close family member that was diagnosed with a grade 3 astrocytoma in February 2018. The tumor was biopsied but is inoperable due to the location in the brain. She presented with mild right sided weakness and losing train of thought. She has been on radiation 5 days a week for the past 6 weeks and is now complete.…
Childhood Medullablastoma
I have a 2 year old nephew that has just been diagnosed with Medullablastoma. I have been desperately trying to find an adult survivor from this cancer that was diagnosed at a very young age (under 3) and have had no luck. I am hoping that someone has some information on dealing with this cancer from this early age. Can…
Medulloblastoma
Hi, I am a new member,my boy 9 mth recently diagnosed with medulloblastoma 3/27/12,surgery done on 3/29/12.still on vent..slow recovery,waiting everyday for news,just so painful. The worst part, I am a physician, know too much abt this, clueless, wat am I doing? My baby achieved milestones, even was walking with support,…
Please help with advices about brain cancer!
My sister has 3 kids (41 years) in May 2017 was diagnosed in Anoplastic multiform glioma. Pathology report shows: MGMT - Non methylated IDH1 (R132) negativ (IHC) PCR signal unmethylierte sequenz - positiv PCR signal methylierte sequenz - negativ ATRX: partieller Verlust (IHC) H3K27M: negativ (IHC) From August 2017 she got…
Shingles- side effect of temodar
Hi all, my mom (now 66 yrs old) was diagnosed with grade 4 glioblastoma on May 5th 2017, she has had 3 surgeries, 6 weeks of radiation and chemo, and she just started her second round of temodar, and after her first 5 days, she got shingles as a side effect. Heartbreaking. Has anyone out there experienced this, or their…
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.…
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…
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…
Glioblastoma Stage IV Brain Cancer
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…
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…
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…
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…
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…
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…
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.…
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…

Brain Cancer

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