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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…
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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…
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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…
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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…
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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.…
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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…
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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…
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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…
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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…
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CBD oils for serizures control
using CBD oils for controling serizures . I was hoping to find someone with good information on these products
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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,…
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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…
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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…
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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…
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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.…
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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…
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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
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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…
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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…
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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?
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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…
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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…
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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…
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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…
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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.…
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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.…
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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…
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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,…
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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…
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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…