Please remember that these discussion boards are a public forum, which means open to the public (i.e. non-CSN members) and the content can be found via internet search engines. Members are strongly advised not to share personal identifiers such as real names, email address, telephone number, street address, etc. This information can be used to identify you and link you to the content you provide. Other areas of CSN are restricted to members only and cannot be found by search engines.

Brain Cancer

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.…
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…
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…
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…
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…
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…
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…
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 . .
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.…
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…
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.…
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…
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…

Brain Cancer

Discussion List

Discussion Boards