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Brain Cancer

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…
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…
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…
Glioblastoma grade IV
Hi all had the tumor removed at the end of Sept-just started the Tamodar and radiation this week. I've been back to work for almost two weeks. Have some mood issues with the steroid and maybe the Tamodar. Around three I really get tired. Any suggestion? for managing the workday?
New to All of This
Hi everyone. My father was diagnosed on April 26th with Glioblastoma Multiforme Grade IV and had an emergency craniotomy on April 29th where the neurosurgeon was about to resect about 93% of the tumor. The second tumor was in a location that the neurosurgeon felt was inoperable. He underwent radiation therapy (30 sessions)…
wishing you...
To all of you that are faced with this nightmare. I wish you a ray of sunshine today... I wish you a road with less bumps and no sharp turns...I hope that everyone that greets you smiles and has nice things to say...And when you sleep if a nightmare starts up you are able to say BOO and make the monster go away and it…
Cryotherapy for resistant malignant glioma???
Hi everyone, I was at catered party yesterday, when a nice lady approached me to give me her support regarding my sister's diagnosis (AA 3). She then proceed to tell me she was herself diagnosed with a malignant glioma 5 years ago. It was an inoperable tumor. She underwent radiation and chemotherapy with Temodar, but the…
Medulloblastoma
On July 25th, my son Devin was diagnosed with a brain tumor which turns out to be Medulloblastoma. On July 27th, he had brain surgery. There were actually two tumors, and only part of one tumor was removed. One in his brain stem was not touched. August 15, Dev began his treatment. He is getting chemo and then radiation 5…
bone necrosis
So my sister is back in the hospital with sepsis again...But went in because she was having thigh pain, and it hurt to walk. The MRI showed something abnormal in her bone, the doctor said something about necrosis. I know what necrosis is but wondering if anyone else has experence this with GMBb4? Gosh we just cant win…
Another NIH/clinical trial/David update
So here's where we are currently at in David's battle with brain cancer..... We flew out to the National Institues of Health in Betheseda, Maryland last week for three days and then flew home. We are here now too. We flew out on Wed. 8/2, met with their doctors on 8/3, flew home on 8/4. They were long flights and a long…
Unusual behavior GBM
My father was diagnosed with glioblastoma multiforme and underwent surgery 4 weeks after I joined his business. I am suddenly responsible for 3 different locations and apparently have a HUGE mess to clean up. I had noticed that he walked funny, slurred his speech and had temper outbursts months prior to his diagnosis, and…
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…
Finances and glioma
Hello, Since glioma (my sister has an AA 3) cannot be cured at this point but may be treated as a chronic condition, can someone tell me how to prepare financially at this point? I want my sister never to have to think about money on top of fighting for her life. I want to be the one that will deal insurance companies,…
Side effects of Temodar
Our son (age 34, AA3/GBM, dx 4-18-11, surgery removed just enough for biopsy) is about to start his first 5/28 day Temodar treatment. This is after a five-week break from his first 28 day/radiation treatments. During his first time on the Temodar, he tolerated it well, as in no nausea. It was the radiation that hit him…
help with anxiety GBM IV
I am under treatment for a GBM IV using a clinical trial medicine. My only problem has been anxiety attacks which occur daily. the doctors tell me that is not the results of the medicine I am on, but rather a common occurrence with this type of tumor. What can I do to help this debilitating problem?
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...
GBM loved one is taking out anger on me
Well, the doctors decided that they will not try for a 3rd surgery. My starts mom chemo and radiation tomorrow, and we are just going to hope for the best. But, in the meantime, she is being horrid to me. I came back home (she lives in Central America) for ten days to be with her the first week of treatment. The weekend…
Grace is dying
Sorry to announce to everyone Grace is in a coma and expected to last 2 days. This is a complete shock. Thanks for your support. I will now be absent for a good while with mourning and grief and funeral etc. GBM from start to finish, a mere 4 weeks. It sucks totally. I had to get home to clean out the bank accounts and…
recurrence....what to do next???
My husband has just been told that his tumor is growing after he has been stable for 9 months after surgery (did not remove much), radiation and temodar, and 5 day temodar every three weeks. He has been active and doing fairly well. Now his doctor is recommending switching to avastin. I would like to hear of other's…
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…
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…
AA3 and decisions about treatment
Hi there, My daughter, 13, has AA3. She had her 4th clear MRI yesterday. YAH!, as happy as I am to hear that the MRI is clear, the doctor offered us some options for treatment. 1. continue with treatments as it seems to be working 2. stop treatment and observe(this is my daughters choice). or 3. continue with partial…
Anaplastic Astiocytoma Stage 3: keeping hope alive- A mothers perspective
My son Gregorsen Eugene was diagnosed with Anaplastic Astiocytoma in February 2004 when he was just 23 years old. He had surgery to remove the canserous tumor in his brain. He then received aggresive rediation treatment for a month and a half. the radiation made him feel realy ill. at times he would experience intence…
NO says everything's "stable" but is it reall?
Ok so I posted yesterday that my husband had an appt. today. The NO said his scan was great and stable. I am so happy for that. He said the weak legs/knees have nothing to do with his cancer or treatment and we need to see his primary care doctor so we have no idea what is causing the legs and knees to give out. Anyway, I…
AA 3, my daughter passed away
So sad to report that my 19 year old daughter passed away three weeks ago of AA3, two years and 5 months from diagnosis. She had two brain surgeries, radiation, temador, CCNU and finally avastin and irtitican IV chemo. She also had a cyst grow after her first surgery in the cavity of her tumor. She fought the cancer and I…
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…
GBM Stage 4 Support
Hello everyone! I'm reaching out on behalf of my cousin who was recently diagnosed with stage 4 GBM. He's in the process of treatment but I don't think the prognosis is good and we are doing everything we can to find a way to beat this or give him as much time as possible. He is really interested in speaking with someone…
delays in temador
Well we again are behind in starting the five days temador. A whole month behind, but today is the day. Praying that it will go well this time. This is only the second round of the five day. We dont even know whats going on in her brain. So thankful that there are no deficits, six months in to this nightmare. I read about…
dylantin issues. severe rashes
I have anaplastic astrocytomas throughout both lobes of brain with a bi0psy test of level 3. I was put on dylantin to prevent another seizure and after many increases to get my level into therapeutic range, I started to get skin rashes over whole body with severe rashes. did anyone else experence this?
Temodar to donate
I have a sealed bottle of 140 mg Temodar capsules to give away to anyone who needs it. Contact me at an mdp@montana.com, and I will send them to you. The expiration date on the package is October 2011.

Brain Cancer

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