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Husband - GBM PH 4 - Surgery - Radiation - Oral Chemo - Questions
Good Morning Everyone - My husband had surgery on June 3 to remove a GBM Stage 4 tumor on the left side of his brain. The doctors at Shands Hospital in Gainesville Florida said they got it all. He is now going through radiation and oral chemo. I know I am so lucky to have him with me. He is so tired from the surgery and…
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Post radiation brain necrosis
Does anyone have experience with radiation necrosis? My husband was diagnosed with inoperable AA III last November. He underwent radiation/Temodar. Had serious consequences with brain swelling after the radiation (and steroid taper)in February (so much swelling doctors couldn't even see the tumor). First round of Temodar…
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High grade glioma, AAIII, GBM, what's the difference? Or does it matter?
We are finally back home in Ohio, after moving our son from DC back home. Not an easy thing as giving up his independence is as hard for him to accept as the diagnosis.(age 34, single/no kids, dx 4/13/11; resection 4/18, only removed enough tissue for biopsy; completed 5 weeks radiation/Temoar 6/23). He has declined…
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AO III Recurrence/NIH/David
I started a new thread because I don't know where I posted what information. A recap on our situation: In July, after a little over 2 years on Temodar with clear MRI's, David had 2 seizures. MRI done in ER showed "disease progression." That means tumor growth. Our NO at OHSU wanted David to be a par t of his Blood Brain…
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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.…
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Coping skills
On June 8th 2011 an MRI revealed that my 4yr old son has multiple golf ball sized tumors on his brain. We immediately drove from Iowa to Memphis TN to St Judes. Lee had a crainiotomy on June 16th to remove 90% of one large tumor on his left temporal lobe and they drained a very large cyst in addition. After the pathology…
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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…
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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…
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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…
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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…
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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…
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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…
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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…
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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…
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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…
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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…
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Germinoma
I have an almost 8 year old daughter that was diagnosed with Suprasellar Germinoma and Panhypopituitarasim in August 2010. Is there anyone in North Carolina that has a child diagnosed with the same Cancer. I would like to meet other parents. Thank you!
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Help!
My wife (age 40) has multiple brain lesions, as a result of breast cancer metastasis, for which she received 5 days of whole brain radiation almost two months ago. She lost all her hair and is excessively tired and weak and unable to walk for more than a few minutes. There has been no follow up with the doctors and they…
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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…
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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…
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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…
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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…
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homeopathic/ Mrs panormitis
Can you tell me a little more about the homeopathic things you used and how you think they helped. With thw symtons or the tumor it self.
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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…
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Anaplastic Olio Grade 3
Could anyone please tell me what the long term effects are fromt demodar and radiation? My husband's doctor didnt' give us a choice as to not to do one or the other. We did get 2 opinions about the results and surgery but not about the treatment. We just assumed it was what any doc would have told us to do since they said…
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i would like to know if anyone else had the same feels like i had
good evening to all i would to know is anyone had the same things like ihave a searies of feeling i wasnt important to anyone .and also a series of depression and i wounder was it it besause i was recovering cancer ? also i get uptight easy . ialso got a good report from one of the doctors i go to it is liveable and…
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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…
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Our Loving 12 yr old son
It breaks my heart to hear so many people going through similar situations with their loved ones as I am going through with my noldest son. My handsome, strong boy has had a brain tumor in the center of his brain since he was 9 yrs old. At that time that they discovered he had it, he just needed a third ventricular shunt…
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decadron and moon face
Was wondering how long after the decardron is stopped that the moon face goes away? Cant wait for this drug to go away, I dont like what it has done to my sisters personality. If dealing with the GBM isnt so over the top. Talk about walking on egg shells,Im walking on glass barefoot...Im BLEEDING....
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Radiation induced deficets: permanent or temporary?
Our son, who is 34, has GBM. He had surgery on April 18, and only enough tissue was removed to get a biopsy. He is currently midway through radiation and Temodar treatment. However, since he started radiation, he has really declined, especially re: gait, fine motor, and speech. Last week, the docs were concerned that maybe…