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Brain Cancer

Archives for September 2011

Recovering from brain surgery
Well, so much happened in a short amount of time that I don't really know where to start. David has been struggling with excruciating headaches for a while now. Since July, I guess. After several different types of MRIs and several trips to the ER, his NO scheduled another craniotomy for Tues. 9/27. On Monday he was rushed…
fatigue/unsteady gait/slowness after treatment for GBM
My husband was diagnosed with a GBM after a seizure in early June, 2011. He underwent surgery followed by 6 weeks of radiation and Temodar to treat the tumor. My question involves recovery from all the treatment - are you always fatigued? Does the treatment enhance the disease to increase unsteadiness and slowness or is it…
Dexamethasone and Night sweats
Has anyone experienced having night sweats while on this drug?? I seem to have night sweats whenever I take dex and it's very irritating.
HOPE for glioblastoma!
Yay for ICT-107 Phase II Clinical Trial - FDA APPROVED! The dendritic vaccine is making progress! There is HOPE, Julia
Primary (CNS) Lymphoma in immunocompromised organ transplant patient with multiply masses
The diagnosis given for immunocompetent patients is different to ummunocompromised patients for obivous reasons. My significant other was diagnosed with inoperable primary (CNS) Lymphoma. There are several masses throughout her brain, some deep within and others somewhat on the surface. She does not want to lose the…
Any young adults with brain tumors in Dayton/Cinncinati area?
Since our son (age 34, diagnosed AA3/GBM 4-13-11)had to move home with us from Virginia, he has lost contact with any friends he had back there. I'm wondering if there are any other young people battling the same thing who would like to get together...maybe for an outing or just lunch? Our son David has some deficits from…
GBM dead in 23 days
My hubby Neal, developed a hand tremor and nausea in mid-August. He started lying around too much and being more forgetfull in July, but these symptoms were subtle. On August 27, he got confused trying to use a computer program, and the next day I took him to the ER and his entire body was CT scanned. The Head CT showed…
Long term prognosis for malignant convexity meningiomas?
Hi all My lovely 19 year old daughter has recently had a malignant convexity meningioma removed from the back of her head. Docs are confident they got it all but the brain surface was reddish and they said this might mean some malignant cells remained. She has just fininshed 6 weeks of radiation and is diong perfectly but…
My husband has inoperable Glioblastoma Grade IV
We found out December 10, 2010 about my husband tumors. It it has been almost 10 months of ups and downs. My husband is 48 this month. We found out because my husband was having trouble sleeping. We went to the doctor thinking he was under stress at work. They told us he has several tumors. We married Jan. 3, 2011. He went…
Inoperable GBM Brain Tumor that Refuses to Shrink
Hello Beth, and everyone else who might be able to help me out very quickly since time is of the essence, and I am desperately looking for a forever solution. Beth, could you please email me the information for the doctor in Kosovo that you located? I would really appreciate this, and hopefully it may even save my dad's…
Need Advice Quickly
Hi all, I can't tell you what a relief it was to find these boards after my husband was diagnosed with AAIII. Unfortunately, I found them too late for some of the information to be useful BUT you always gave me HOPE. My husband is losing this battle quickly and the doctors have told me that there is not much more they can…
Anyone has tried GENE therapy and is cured?
Dear all, I am looking for people who have considered gene therapy (oncolytic virus). I truly believe that is where the cure lies. I have been reading on HSV, VSV, adenoviruses etc.. Any info would be welcome with open arms. It looks like from 2000-2010 it was all phase I/II clinical trial. A few phase 3. I spend every…
A New Era for Glioma
Dear all, if you are reading this message, then it means that you either have brain cancer or your love one does. Either way I am so so sorry. I did a websearch regarding ONCOLYTIC therapy and gliomas.For the scientifically inclined: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2720101/ The theory is that viruses invade…
FDA Approves ISORAY's GliaSite Treatment for Brain Cancer
This may be too late for some of us but has anyone heard of this treatment for brain cancer? The article looks very promising. The treatment occurs AFTER surgery and the radiation "seeds" are implanted directly at the tumor site. The FDA just approved this treatment on 9/12/11 SO for those of you that are beginning the…
Anaplastic Astrocytoma Grade111/ inoperable.. What works???
My mother in law was diagnosed 3 weeks ago with a brian tumor, 2 weeks ago was her biospy and 1 week ago we found out it's Anaplastic Astrocytoma grade 3 and it's inoperable. She 54 and a health nut! The tumor is affecting her memory, speach and equlibreum. We want her to have the best treatment possible and I was…
Grade 3 Fibrillary Astrocytoma and deuling doctors
My hubby had only hand tremor, nausea, and a single episode of confusion by August 27, 2011. He had diffuse periventricular masses on CT and MRI and stereotactic biopsy on 08/31 finally came back from Mayo on 09/12 as Grade 3 Fibrillary Astrocytome. His first oncology appointment is August 15. Since August 28, he has…
Help me ask the right questions
I had started a thread pre surgery asking questions about my boyfriend’s cancer which was diagnosed as Anaplastic Astotyoma. He has now completed surgery, pathology came back grade 2 oligodendroglioma. After a scan and seeing the oncologist, he informed us this cancer has started to expand to the right hand side of his…
gbm4 and my sister
I hate this this cancer its cruel and unfair. Its taking my sister and I cant control it. She doesnt want to die !!!! We arent ready. The doctor is in the room with her kids right now telling them to stop the treatments. I had to leave I just couldnt hear the words that he was going to say. Saturday she was ok we watched a…
Can't believe it--now insurance approved clinical. Now what?
Such an incredible roller coaster. But at least it's good news this time. When David first had a recurrence back in July, his insurance denied the treatment that his NO wanted to do, because the way the chemo was delivered---bypassing the blood brain barrier--is considered experimental. David's NO, Dr. Neuwelt, personally…
Anaplastic, Grade III oligodendroglioma
Hi - I'm new as of tonight. Pardon me if I start crying. My 76 yo FIL was diagnosed with an anaplastic Grade III oligodendroglioma. Officially, the report came out today; final genetic studies remain pending. Dad underwent a craniotomy almost two weeks ago at Rush in Chicago. His neurosurgeon called me today with the…
inoperable now they want to operate
7 months ago my sister was dx with GBM 4 they said it was inoperable it was deep with in the white matter, She did radiation temador and some avastin. The radiation was cut short one day. The temador was cut short one week during radiation and we only got 2 cycles of the 5 day temador, I think we got avastin 3 or 4 times.…
Tumor growth/Avastin--can he go to college, work?
David and I are in Maryland at the National Institutes of Health. We received the all the test results earlier today at NIH. They were not what we wanted to hear. The tumor increased in size--approximately 25% increase while on the experimental chemo, Sutent. The increase was enough that David will no longer do this…
Skull based Institue
have any of you had experience with or heard of the skull based institue in Los Angeles? I believe the doctor's name is Shehanan.
Schwannoma Tumor
It has been over a year since my husband underwent major brain surgery to remove the schwannoma tumor that invaded the left lower part of his brain. Last year was one of the most challenging I've ever experienced in my life. To go through this with a loved one from the time before diagnosis when you are floundering around…
Has anyone had experience with this?
The muscle right under my husband's eye has been moving all the time lately and I have also notice his shoulder and arm will sometimes do it as well. His arm movement sort of looks like when you squeeze something real tight and your body "shivers" for lack of a better word. It's hard to explain but I was wondering if…
Waiting for biopsy results and he is dying fast
7 days ago(Aug 28) I brought my husband to the ER. I noticed his hands shaking on August 12 and he said he was nauseated every AM, but then ate a great supper. August 15, he had me tell him how to get to our favorite restaurant, but it did not register with me. I set up appointments for him to see a neurologist on Aug…
GBM diagnosed in May 2011 Having more symptoms after treatment
I was diagnosed with GBM IV on May 1, 2011. Had resection surgery on May 3, 2011. Once the incision was healed enough, I started radiation and chemotherapy after 3 weeks from the surgery. On the following Monday to start the first full week of radiation and chemotherapy, I developed spinal meningitis and a staph infection…
Severe anger issues in Paediatric brain tumour survivor
Hi. This is my first post on this message board. I have spent my morning researching online causes for my son's anger and thought maybe first hand stories may give me some insight. A brief history: My son was diagnosed with an inoperable low grade glioma in the brain stem when he was 3.5 years old. It is a focal medulla…
Possibly off clinical--Avastin now?
We flew back from NIH on 8/26 (my 33rd anniversary) and David had an excruciating headache on the flight. It was a nightmare, with the stewardesses all clustered around our seats, giving David oxygen, putting icepacks on his head, etc. We finally got that headache under control with a lot of oxycodone. It scared us for…
tumor growth gmb4
My sister had her second MRI, the tumor grew was 2.5cm X 1.8 X 1.7 now 3.0cm X 2.5 cm. She has missed so many treatments so doctor wasnt surprise. Im really sad. The doctor will start her back on the temador but we are a week late again. He is going to do another MRI right after and start something new.We had to stop the…

Brain Cancer

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