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

Glioplastoma stage 4 dad has 9 treatments left.
So my dad has had a regression he was on a steroid to help with swelling and after 3 weeks of chemo the popular temodar .. He suddently had weakness in his legs and severe tiredness. His blood sugar had shot up to 500. After a few weeks of hospital care he is in a rehab hospital and initially the first 2 days he was…
PXA tumors
Looking to hear from others who have been diagnosed with PXA tumors. My son was diagnosed at the age of 15 with a PXA Grade II, but then after a second opinion after his 2nd surgery, there were concerns for a possible higher grade neoplasm (Grade III). He had 6 weeks of radiation (tomotherapy) and chemo (temodar) which…
Anaplastic Astrocytoma Grade 3. Without Surgery.
Hi all, In Feb 2016 my husband (aged 25) was diagnosed with Anaplastic Astrocytoma Grade 3. An orange sized tumour is directly in the middle of his brain stem and surgery isn't an option, as advised by two different brain cancer specialists. He underwent 6 weeks of radiation which has followed with chemotherapy (tablet…
Lomustine (CCNU)
Husband has anaplastic astrocytoma Grade 3. Did 6 weeks radiation plus Temodar. Then Temodar 5 days out of every 28 day cycle for 6 cycles. Tumor has progressed. Soon he will begin Lomustine once every 6 weeks. Anyone with experience on this drug? Side effects? Tumor is in right frontal lobe..."movement area" ...and we…
Adult Medulloblastoma
My husband was diagnosed in December of 2010 with a brain tumor. He had had symptoms of hand shaking, balance off, dizziness, nausea, and slurred speech. We then went down to Indianapolis, IN and had the tumor removed. It was located on his cerebellum and was the size of a ping pong ball. They said that there was a…
DPIG
Does anyone know if adults can get DIPG?
CAR T-Cell
Has anyone had this treatment/ CAR T-cell therapy for glioblastoma: recent clinical advances and future challenges. ... In patients with certain hematologic malignancies, the use of autologous T cells genetically modified to express chimeric antigen receptors (CARs) has led to unprecedented clinical responses.
I don't know where to start? My 16 year old
Question
Hello! My name is Regina. My friend often has pains in the back of the head, and she also complains of headaches and nausea several times a day. I worry about her health, and I suspect that she is seriously ill, recently read the…
Medulloblastoma Survivor help
Hi, I'm writing to see if I can get some information from some of you out there that have survived medulloblatoma or have children that have survived. My son was 10 years old at diagnosis, had a resection, radiation treatment and 8 rounds of chemo. He was not High Risk. During treatments and for a time after he received…
Question
Hey Guys, I was diagnosed with RCC back in November and the pathology report and imaging suggests it was contained and did not spread. Back in November I also had a CT then a follow MRI of my brain as I was having some symptoms that concerned me. The CT found "concern for subcentimeter right frontal and right cerebellar…
Asking for advice and prayers
My dad had sinus cancer in the past... So I'm very familiar with what ask he went through and it was tough to watch. We just found out dad has a tumor on his forehead that went through his skull to the other side, however it has not affected the brain. He has to have biopsy and pet scan scheduled. Just wondered if anyone…
alternative treatment never to late i hope
So my son Zakk has finiished his brutal radiation/chemo treatement--one year and two months of that, WOW!!! Alternative treatment that i wanted was thrown out as soon as the idea came out of my mouth, as it would interfere with the effect of the chemo, etc. Okay so now that he survived that nuclear war on his body, I'm…
adult PNET
My fiancee was diagnosed with PNET in early June after surgery to remove a golf-ball size tumor from his brain. He's recovered very well from the surgery and is due to start treatment (radiation plus chemo followed by chemo) this week. We've been told by everyone out there that this cancer is very rare in adults, and no…
medulloblastoma in grandson
Long story short this been a rough few months. I am 4 months post radiation for BOT HPV+ Cancer My grandson lives in the Republic of Georgia and Sept 29th he was diagnosed with medullblastoma. He is 6 years old. We were not made aware of this until Sept 8th. They lept a secret because of my wife's dealing with my cancer.…
Pleomorphic Xanthoastrocytoma with Anaplastic Features
Hello all! I am new to these boards and was trying to find anyone who has been diagnosed with PXA w/ anaplastic features? My surgery was 6 months ago, I had a gross total resection and no other treatments. I was diagnosed initially with a difficult to classify, unusual grade 2 astrocytoma. Second and third opinions…
Grade III: Anaplastic Oligodendroglioma lifespan?
My 26 year old son was diagnosed with an anaplastic oligodendroglioma in May of 2009. He had a craniotomy and they felt like they got all of the visible tumor out. He then had 6 weeks of radiation along with 6 weeks of Temodar. Now he's doing the 5 days of Temodar/23 days off, indefinitely. Except for nausea etc while on…
Anaplastic Oligodendroglioma
Hello Friends, Between 1998 and 2003 I used my phone extensively for 4 to 6 hours, and In 2003 I had started have headaches after 3 days I went to my Physician and he told me to get scanned so I went to one of the best hospital Memorial Sloan Kettering Cancer Center and Doctor has said to me that I have a benign tumor. The…
Brain Tumor
Anyone here with stories advice anything really, My Dad (64) healthy, was diagnosed with a brain Tumor. Specifically Angioplastic Oligendioma grade 3. Im frustrated, scared and dont want to lose my dad. I know he is starting radiation next week, but that is what the nuero doc has said. We still have not seen oncology. The…
CBD oils for serizures control
using CBD oils for controling serizures . I was hoping to find someone with good information on these products
Brain Radiation Necrosis
The treatment method recommended for brain metastases of large solitary tumors exceeding 2cm in diameter is surgical resection followed by 5 fractions(at 2.0gy per) of focal radiation to the local tumor bed. My wife received the 5 fractions plus an additional 20 fractions of Whole Brain radiation(at 2.0gy per). Mindful,…
is it normal to sleep all day after whole brain radiation?
My dearly loved 28 years old boyfriend has recently diagonosed with brain mets (5 tumor, the largest one has been surgically taken out), the primary is colon cancer. He has just finished 10 treatments of whole brain radiation (WBR) and he feels tired all the time, he slept most time during the day and only comes out for…
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?

Brain Cancer

Discussion List

Discussion Boards