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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)…
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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…
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hate this cancer
I hate this cancer and what it is doing to my family, It has taken my family and ripping us apart. We should be standing together and helping my sister. The cancer, decardron and morphine have changed everything. My heart is broken I cant even talk with my sister. Her children are fighting, Im getting pushed away. I dont…
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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…
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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…
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Please help.. Survival date
Hi. My husband Of one year was diagnosed w an anasplastic astrocytoma grade 3 in July. He has had partial resection , gliadel placement , steroids and temadur now. He's 41 and we are optimistic but have read probably too much. Is there ANYONE with info with long standing survival numbers . Please tell me what you have…
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Please help.. Survival date
Hi. My husband Of one year was diagnosed w an anasplastic astrocytoma grade 3 in July. He has had partial resection , gliadel placement , steroids and temadur now. He's 41 and we are optimistic but have read probably too much. Is there ANYONE with info with long standing survival numbers . Please tell me what you have…
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Lost Husband to GBM
I've posted here several times in the last two years. I didn't realize that when hubby's symptoms began on August 13th, 2009 he'd die exactly two years later to the day at age 45. My husband was such an inspiration to me in how he bravely endured three different rounds of brain cancer, mixed-germ cell (germinoma, AA and…
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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…
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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,…
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Anaplastic Astrocytoma - Reaching out - Pre surgery questions
Hi, I was hoping someone who has gone through a similar situation, someone diagnosed with the same type of cancer or family and friends, might be able to answer some questions. My boyfriend of 5 years, age 29 was diagnosed three days ago with anaplastic astrocytoma. This all only began 3 weeks ago, starting with severe…
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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…
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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?
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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…
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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…
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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…
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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?
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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.
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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…
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Proton Therapy - Oligodendroglioma - From Canada
Hello All, I am wondering if anyone has Oligodendroglioma and have successfully used Proton Therapy. My father has this type of brain tumor, and we are going to see if we can go to the USA for Proton Therapy at the Massachusetts General Hospital. Our meeting with the Oncologist is this Thursday, August 11th. I am going to…
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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…
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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…
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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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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…
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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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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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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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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…