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Brain Cancer

Archives for July 2011

GBM4 no more avastin
Well we got the final word today no more avastin. My sister ended up with blood clots in both lungs, and is now on coumadin. The doc said she cant have avastin because of the risk of bleeding.Im so sad I had such great hope with this drug. He will let her have the temador and we were going to go back on it today, but the…
Please pray for Ayumi.....
Okay guys, I'm going through a rough time with a very close friend named Ayumi, recently she and he has been diagnosed with a grade 4 head Tumor "Glioblastoma multiforme". Ayumi is currently going through a rough time, and I've been talking to her non-stop all day and night till late into the morning from 7-5 am. After…
Temador and Oligodendroglioma
My brother in law was diagnosed with an Oligodendroglioma about five years ago. He's had surgery to remove part of the tumor, and is currently receiving Temador. His last check in showed the tumor has stopped growing, but he wants it officially in remission. I have been trying to do some research online for him, but he…
Looking for other possible resources
My friend's 15 year old son was diagnosed with AA Grade 3 in August of 2010. He was treated at Dana Farber with surgery, experimental gene therapy and radiation. It is located on his Thalamus eliminating many possible treatments including Chemo. Follow up MRI showed 52% reduction, 6 weeks later weakness was shown on his…
Proton beam therapy? Lookin for info and/or personal experiences.
Looking for any info regarding proton beam therapy for oligodendroglioma. Has anyone done this?
Help---need input on The National Health Institute and Dr. Howard Fine ASAP
One of my family members who is advocating for us found a research clinic called the National Health Institute in Bethesda, MD. It'a s federally funded research clinic. It's run by Dr. Howard Fine. I don't know a thing about him or them. Do any of you know anything about this place? All they do is clinical research. They…
First post-radiation MRI, low blood counts
We got the results of our son's first post-radiation MRI yesterday (age 34, dx inoperable GBM 4/18/11). Since it's only been three weeks since he finished, we got the expected spiel: "it's a mixed bag. Some areas show shrinkage, but there are other areas showing flares/hot spots. Can't say if they indicate new tumor growth…
Glioblastoma Stage IV
My mother (56) was diagnosed with stage IV Glioblastoma on 13 May 2011. Since then it has been a roller coaster of treatment and emotions, a literal nightmare. Due to the location of her tumor, she is not a candidate for surgery so her only treatment options at the moment are Radiation and Oral chemo with Avastin to…
DR. BERGER UCSF- Any experiences?
Well, this is my first time posting on this board. My Husband was diagnosed with GBM IV about a week ago. We were told it was inoperable due to location. After much research and several opinions we decided to get on a plane and go to San Francisco to see DR. BERGER who said he will operate. It was a hard decision to make…
DR. BERGER UCSF- Any experiences?
Well, this is my first time posting on this board. My Husband was diagnosed with GBM IV about a week ago. We were told it was inoperable due to location. After much research and several opinions we decided to get on a plane and go to San Francisco to see DR. BERGER who said he will operate. It was a hard decision to make…
DR. BERGER UCSF- Any experiences?
Well, this is my first time posting on this board. My Husband was diagnosed with GBM IV about a week ago. We were told it was inoperable due to location. After much research and several opinions we decided to get on a plane and go to San Francisco to see DR. BERGER who said he will operate. It was a hard decision to make…
DR. BERGER UCSF- Any experiences?
Well, this is my first time posting on this board. My Husband was diagnosed with GBM IV about a week ago. We were told it was inoperable due to location. After much research and several opinions we decided to get on a plane and go to San Francisco to see DR. BERGER who said he will operate. It was a hard decision to make…
HELP !!! Long Term Fatigue after surgery
I am new to this site as I am trying to find help for my fiance; he had a right front temporal Astrocytoma removed 12 years ago. 20% of his brain was removed via surgery. Every day we chase after neurologists, psychiatrists, and programs looking for someone to help us. Flavio suffers everyday from the brain damage…
GBM - No more chemo
It's been a while since I've posted. I've been so busy providing full care for my precious hubby. Quick recap for his brain tumor history - 1986/mixed germ cell tumor on the hypothalamus (inoperable, given chemo and whole brain radiation (WBR) in 1987); tumor free and clean MRIs until 2009. Diagnosed 8/09 with Anaplastic…
Brain and Lung Melanoma
My husband, who is 51, has melanoma in his brain and lungs. He has had radiation and is currently getting chemo. His doctors told him 6 months to a year at best. We will know if the brain lesions spread in a few weeks when he has an MRI of his brain. It is devasting as you all know. I do not wish to complain. I am here…
Dexamethasone-induced anxiety and paranoia
Our son (age 34, dx 4/48/11 with inoperable GBM) has been on high doses of Dexamethasone since mid-June, which was at about the start of week-three of his 5-week radiation. Started with 24 mg a day. He has been off radiation now for almost three weeks, and he's down to 8 mg. Hoping to get him off altogether soon. But last…
grade 2 with 1p19q
In March of 2010 I had surgery to remove a grade 2 oligo from my left temporal lobe. I am on the watch and wait plan with MRI's every 6 months. The next one is in September. I see that having these genes reduces survival rates for grade 3 tumors, but the research on grade 2 tumor's is less clear. Is there anyone else with…
please pray for my sis
lease pray for my sister she is in ICU with blood clots to her lungs. They are going to start her on a heprin drip and she has platlets of 23,000 not a good combo. This is the 20th annv of our mother death, very bad day. Please pray for my sister. GMB 4 5 months into this...
anyone heared about immunization theropy for anaplastic astrocytoma grade-3
HI,everyone, i am living in canada, one of my cousion was dignosed with stage3 anaplaastic astrocytoma earlyer this year. she is only 30,and has a cute little boy who's only 5. All my families feel so sad. She already got a surgery and taking chemotheropy right now. Her husband heared about this immunization theropy from…
Anaplastic Oligodendroglioma recurrence
We've had a really horrible week. David had two seizures--we suspect grand mals but they happened when he was alone (sleeping both times) so we don't know for sure how bad they were. He had one on Saturday, 7/2, and another one on Thursday, 7/7. Both times he bit a large chunk out of his tongue and it's really painful.…
How long after radiation for first MRI?
Our son (age 34, dx GBM 4/13/11) finished his five-week radiation/Temodar regimen June 23. He is scheduled for his first post-radiation MRI on July 18, which is just a little over three weeks after he finished. Seems quick to me. Is this really enough time for the effects of the radiation to go away in order to get a true…
Low platelets and Temodar
Our son David (age 34, dx inoperable GBM in April 2011) finished his first round of treatment (28 days of radiation/Temodar) on June 23. While the radiation has been really hard on him, he handled the Temodar well...at least until yesterday. He started having those crazy looking bruises all over his body. A CBC said his…
What is Keppra like?
My son David apparently had a seizure in his sleep on July 2/3. He doesn't remember it but he woke up in the middle of the night with a chunk bitten out of the side of his tongue--a big chunk. There were some other indications that it was a seizure too. He called his dr and spoke with the resident on call and the resident…
double vision and "cool down" period after radiation
Our son (age 34, dx w/ inoperable GBM on 4/18/11) completed his five weeks of radiation/Temadar regimen one week ago. During radiation, he was put on pretty high dose of Decadron (24 mg)for gait, vision, and speech problems that got way worse with the radiation. The docs couldn't say if this decline was caused by the…
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…
who gives them the right to take away our hope
Its very upsetting when a doctor gives that thier is no hope talk. We have not had that but isnt what they dont say.My sister has been in the hospital twice now with sepsis. And some lady walks in the room with that hot pink paper ( DNR )with a smile. Hi im from palitive care... WE just started this why are they doing this…
anaplastic astrocytoma stage 111...young child
My 12 years old niece was just diagnosed with anaplastic astrocytoma 2 days ago. Her parents were told she has 50% chance of surviving chemo and radiation.... Let me tell you her back story. Her name is Sydney, she has been a very active and healthy little girl. Saturday while playing with her friends, she phoned her mom…

Brain Cancer

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