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Brain Cancer

Esthesioneuroblastoma
Anybody out there know of or have information on survivors of olfactory (esthesioneuroblastoma). I am a 2 year survivor and would like to communicate with anybody that has info. Thanks!
Optic Nerve Glioma
Hi all. i was recently diagnosed with optic nerve pathway glioma. i am being told it is a rare type of brain cancer and i am looking for anyone with this diagnosis to connect with. I am scheduled to start a 6 week course of photon therapy at the end of july. wondering about side effects and if anyone out there has or has…
Family Member 6 Months Left To Live
My brother in law was diagnosed with brain cancer 15 months ago. A few months ago treatment seemed to work as the tumor shrunk. And then today the doctors said it grew significantly and estimated 6 months left to live. I am trying to be so strong for my wife because i know I need to be there for her. But this news has…
Recurring medulloblastoma in grandson
September 2018 our 7 year old grandson was diagnosed with medulloblastoma. Everything was going well until October of 2019 when Cat scan showed a small tumor had reemerged. They treated with a different type of chemo but it was ineffective. he started having motor function issues with speech etc and they went to hospitol…
New Here: Question About Gliomas
Hi! My mom was diagnosed with a mass, presumed a glioma, on her right temporal lobe. She has waited it out to see if it will grow. After almost a year it grew a little and the Doctor is recommending surgical removal. We are all distraught, of course. Can anyone share their similar experiences? Any feedback is appreciated.
Avastin alone, no chemotherapy with it?!
My husband, Jacob received the first infusion of Avastin yesterday ( failed temodar).It was Avastin alone , no chemotharapy added. When I asked the NO, he said there is no proven benefit of using chemo ( and there is a risk of platelets go down!). However, I read everywhere some type of chemo is always give along with…
Ladies out there dealing with hair loss
Okay, I realize that in the grand scheme of things, hair loss from radiation is not really that big of a deal - but now that radiation is over (ended mid-September 09) and I'm on the Temodar cycles, I am seeing NO real re-growth! It's frustrating. With a limited life expectancy at this point, I really am trying to enjoy my…
Medulloblastoma - stronger medication
Our grandson has braincancer medulloblastoma. He is about 17 months post rad and chemo. Last week he was back in Rome to have his nomal scan. My wife is worried because the parents won't divulge why the doctor recommended stronger medication. I have a feeling the cancer returned. Is there anyother reason why the doctor…
Glioblastoma diagnosis - 58 year old male
I have seen some forum topics here on Glioblastoma, but am searching for the most recent information available. A family member was recently diagnosed with Glioblastoma (58 year old male), had surgery and has now started on chemo and radiation. Doctors are expecting he will survive between 18 and 24 months. Knowing this is…
Chemo for brain tumour
My wife just finished 6 weeks of chemo and radiation. During the last week she started getting a bad itchy rash. It covers her back, legs, bum, arms, breast and arm pits. She finds it extremely itchy. I put cream on her and she ices it and it helps. It has now been over a week since she stopped having to take chemo pills.…
Glioblastoma multiforme
This is so bizarre that I have not slept in 2 days. My husband was diaganosed with a glioblastoma multiforme in January that is in the shape of a butterfly across his left and right frontal lobes and crossing the corpus crossum {sp}. He had 31 days radiation, and round of temador. Dr's said he had 3-6 months to live. He…
HOMEOPATHY & DIET for treatment of GBM IV -
Hello all...it's been 5 months since my diagnosis of GBMIV. It's been a tough journey but I'm staying strong. After getting the first round of chemo (40 days) and Radiation (30 days) I had decided to stop these treatments based on material I have researched and personal choices. In place of the ideal treatment of chemo and…
PET/CT Scans
How many brain PET/CT scans have people had? How frequently? Are the follow ups done indefinitely?
Help
So I dont see many actual patients posting here. Just a lot of caregivers. I'm 32. Don't really have much for a support system. Not emotional anyways. My wife was in the process of leaving me when we found out. i rapidly lost feeling in my right hand and arm and I quickly developed a limp. Doc quickly prescribed Avastin…
Squamous Cell tumor Cavernous sinus
Brain Cancer Cavernous Sinus Squamous Cell Primary tabs * View(active tab) * Edit Sat, 02/08/2020 - 2:52pm — Ingleside I recently got good news. On July 3, 2019 I had a crainiatomy at Baylor in Huston Texas. On December 14. 2019 i finished my 9th Chemo Treatment and 33rd Radiation treatment. On Jan 24, 2020 I had an MRI…
glioplastoma
My husband was diagnosed with grade IV glioplastoma 2 months ago. He had surgery 2 days later to remove the 8 CM tumor and has been undergoing radiation and chemo. He has only 4 treatments left. I am wondering how extensive the family activities should be this summer. Our children have suggested a cruise with the family…
My dad is fighting brain cancer and mom is struggling.
So at the beginning of this year my dad began to deteriorate. Dad is a tough patient and he hates going to hospitals. We begged him to see a doctor. He was not listening till we finally got him to a local hospital they did a ct scan and found a tumor 4 days later he had the operation to remove 80 % of it. He has now been…
Primary CNS Lymphoma
I am a healthy 32 year old male recently diagnosed with Primary CNS Lymphoma. I have been through 3 cycles of high-dose methotrexate with doses of procarbazine every other treatment and so far my progress has been great. I am writing because - from what I know about CNS Lymphoma of the brain - I am a very unique case.…
Juvenile Pilocytic Astrocytoma treatment - Carboplatin and Vincristine
Hello - My 3 and a half year old son was recently diagnosed with a JPA on the tectal plate of this brain stem. The surgeon was able to resect 50% of the tumor and added that complete resection is possible, but may lead to long term effects, such as loss of hearing. His oncologist wants to immediately put him on a chemo…
Husband has glioblastoma - how to deal with children?
My husband was diagnosed in June with glioblastoma, grade IV. He's had surgery. They removed about 65%. He is currently undergoing radiation and chemotherapy with Temodor. He's 39. The tumor is in his cerebellum. We found out about the diagnosis because he started having a tick in his hand where he couldn't stop his hand…
Cousin with newly diagnosed Stage 4 glioblastoma
Hello, I am asking the group for some direction for my cousin. Those who have experience with glioblastome (inoperable) stage 4 and have experienced the standard of care chemo/radiation. If you have any experience with "novel" therapies or clinical trials on the East Coast (they live in TN) I would appreciate some ideas…
Long term effects of brain surgery
I had my oligodendroglioma tumor removed in 2008, I am still suffering from extreme fatigue and some small memory issues. Does anyone else have lasting symptoms? I am,however seizure free and would do it again in a heartbeat. Kelly
Burzynski Clinic in Texas
Recently our nephew told us about a friend with a brain tumor who just completed an alternative treatment at this clinic and has had an MRI this week that indicated that the tumor is gone. Anyone know about this ?
Glioblastoma - patient sleeping endlessly
My dad was diagnosed of brain cancer in Jan. Undergone surgery and chemotherapy radiation till March. Last 15 days he has declined rapidly and is bedridden completely in ICU. He hardly responds to commands. Doesn't open his eyes at all. His vitals were bad earlier but now wvweveryth is in control. Doctor says they have…
Anaplasic Astrocytoma Clinical Trials
Looking to hear about any experience with clinical trials and specifically anything applicable to Anaplastic Astrocytoma. My husband was diagnosed recently and after radiation + temador and 4 cycles of temador the MRI this week shows progression. We did our radiation at Mayo for Proton Beam but have now been getting…
DC vaccine therapy ?
My name is George. My mom has GBM. we are interested in getting DC vaccines ttt. We can not find any clinical trial that fits. But found many centers in Germany that offer that for money. Anyone has experience with those kind of centers or this line of therapy ??
leptomeningeal headache management question
Hello, my mother is a lung cancer patient with leptomeningeal metastases (LM). She is currently on Osimertinib, which I got for her from India. We are currently being treated overseas. (China) After she was diagnosed of LM, I found a local self help group of 500+ LM patients. One common complaint I've noticed from members…
Oligodendroglioma
Hallo I am intrested in people who are deal with the same brain cancer. My husband had surgery (about 90 % resection) in october 03 (oligo grade II/III) and than he had radiation therapy (36 x , tot. 60 gray) and now he is under chemo (Temodal). Fortunately he is very well, without any handycaps and pains. He can go to…
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…

Brain Cancer

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