Gileo Blastoma Multi Forme

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Glioblastoma Multi Forme

by Mikki on Mon May 24, 2004 12:00 AM

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Would like to hear from someone who has a relative or older relative with this kind of tumor.

Gbm Tumor

by Eldon_P on Tue Jun 01, 2004 12:00 AM

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Laura P... Not sure what kind of information you are wanting but I was diagnosed with a grade III astrocytoma primary brain tumor in the top right portion of my brain in December 2003. I had a total resection (so they say) December 12, 33 radiation treatments (IMRT), and will be starting my 6th round of oral temozolomide chemo tomorrow. I have visited 2 cancer hospitals for second opinions and alternative treatments. Both hospitals did another path on the tumor and upgraded it to a Grade 4 Glioblastoma. One hospital has added to my treatment 200 mg Accutane for 21 day periods along with the Temador. I also have been taking heavy doses of steriods daily for over 30 days now. My latest MRI shows no further growth of the remaining tumor however since the December 12 resection it has grown 1 mm in one dimension and 2 mm in the other dimension. The present plan of attack is to stay with Temadar, Accutane, Steroids, and repeat MRI's every 30-60 days and review with my radiologist here in my hometown (KC) and the other oncologist. Further surgery does not seem to be something any of the doctors want to do....

Glioblastomer Multiforme

by Linda_S_6 on Wed Jun 09, 2004 12:00 AM

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My girlfriend of 15 years just lost her battle with this monstrous disease, she fought a commendable battle won a few but lost the war. I don’t know what you want to know about this disease, if I tell you honestly it will be devastating, my friend was 55 at diagnoses, I talked to the doctor after surgery I thought Linda knew nothing of the prognosis, I tried so hard to protect her from the fear but, she knew when she woke up after surgery she kept it from me I’m starting to editorialize so I’ll stop if you have any questions about what Linda endured I’ll be happy to tell you, however if your the victim I would discuss it with the doctor, everyone is different, your experience may not be as bad or it could be worst. I was at Linda’s side every minute of every day I never left her side I retired to be with her, I never let her be alone, she had two seizures only, at the beginning, the doctors were very good in keeping her seizure free for the rest of her time. If you have family of that special share your plight with them, there suffering as much or more or more than the victim, they will be left behind as god takes your loved one. I’m sorry I keep going and going if you have any questions I’ll be happy to try and answer them. Good luck to the victim and all that love her.

Glioblastoma Multiforme

by Linda_S_6 on Fri Jun 11, 2004 12:00 AM

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Laura, I hesitate writing to you, I don’t want to add to your fear. My girlfriend’s first symptom was an inability to read, when she first mentioned it I thought she needed stronger glasses and I got a magnifying glass, then she said she forgot how to read anything. I was going to make an appointment for the same week. The next day Linda came home, I asked her how she felt and she couldn't talk and stared at me with a confused look. She was in a seizure, she didn’t fall or do anything like a seizure (I was a police officer for 36 years and knew what they looked like). I rushed her to the hospital via ambulance, she began to have severe seizures had to be intubated. The doctors thought she had an infection from a recent ear surgery so she was brought to surgery. 6 hours later the doctor came out and told me he had the worst possible news - Linda had Glioblastoma that had to be confirmed with biopsy. I asked the doctor what could be done and he told me what you described in your letter. I asked how long she had to live, his answer was devastating - 3 to 5 weeks to 6 months. I brought a beautiful life loving healthy 54 year old women who did all doctors recommendations faithfully, she worked in a hospitals oncology floor and knew what to expect. She lived 17 months, she had 32 radiation treatments and 7 months of temadar. The treatments stopped being effective after 7 months and they tried other things but they really didn’t help. The decadon (steroids) made her double her weight from 135 to 285. There is a bright side, well sorta. Linda was supposed to die at the most 6 months but she added another year to that. They are finding new treatments daily, hopefully soon enough to give you a lot more than Linda. One thing you can never do and that’s give up. You have a tough road to hold but if you fight it like Linda did you can beat doctor’s odds and who knows someone can come up with something to buy you more time. Any extra time is precious. I will add you and all your family to my prayers. It’s terrible for you I know but your loved ones can only look on and pray they will feel guilty because they can’t help you, but their faith in a higher being as well as yours will help you all get through this. Good luck, Carl F.

GBM Temador and Accutane

by Alani on Thu Jul 15, 2004 12:00 AM

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Responding to message #2 - she reported her progess with temador after upgrade from III to GBM. How is she doing? Also shows use of accutane with temador after radiation. Anyone using this for long periods?

Live-in Mate of Linda S. Who Passed 4/25/04

by Linda_S_6 on Wed Jul 21, 2004 12:00 AM

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I was with my soul mate, Linda, from the first symptom to her last breath. I’m not sure what you’re looking for. I’ll give a brief account of her case. Linda started to have trouble reading, I thought she needed new glasses, I had her look through a strong magnifying glass, it became obvious in just seconds, she could not read something she needed to do on a daily basis keeping records of patients in a hospital, the next day she came home and tried to talk to me, she was unable to speak she had a look of abject fear on her face she started to seize, rushed to hosp. via ambulance, continue with minor seizures, seizures became more violent, she was intubated, and seizure meds were given. Linda had ear surgery a week before this began, doctors were sure she had an infection from surgery, she had a craniotomy where doc expected to remove pus and drain it for a few days, they were wrong the diagnosis was as bad as anyone can hear, she was in grade 4 by virtue of the type of tumor she had. She endured 32 radiation treatments and 7 months of chemo, temadar it stopped working at 7 mo. period Linda also received decadon a steroid formulated for brain tumors, she doubled her weight plus 135 to 285 in 13 months, her immune system was destroyed she started to get other ailments like chicken pox when they returned as an adult they were shingles an excruciating painful malady, she was readmitted to the hospital on Feb. 10th, after 25 days she was sent to a rehab to die, she never came back to our home again, she was cremated and is next to me as I write this, I’ve seen cases where the entire tumor was removed at least as much as could be found, even with the tumor gone in part at least the visible part, there prognosis was the same 6 months to 1 year to live. As the doctor explained to me this type of tumor is so virilent it can never be completely removed its so aggressive it invades the rest of the brain and looks exactly like brain matter even 1 microscopic cell will be back to kill with the same aggressiveness the only way to escape it is to die, when you see someone you love going through the emotional faze of this disease you pray god takes them as fast as he can because knowing your going to die no matter what types of intervention is tried, you want to see there suffering go away, I can't speak for everyone but my ability to watch the love of my life going through this almost made me want to go with her, she’s at peace at last but my emptiness will never go away until I’m with her, I pray for anyone who has this disease and there families. For god to guide them through the nightmare. Good luck may god be you!!


by Linda_S_6 on Thu Jul 22, 2004 12:00 AM

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in response to your request of patients who may have used accutane to supplament decadon, i was in contact with anderson medical center in houston, there supposed to have all the best treatments for glb, tey were going to start the accutane but as of that time they had not begun the trial, we went to massachusetts general hospital in boston, they also had not yet tried the accutane but were lookinf frward to data generated by other hospitals who were using it at that point, it would come to late for linda she passed on april 25 2004. good luck to all who are going through this now !!i would be happy to answer any questions however i was just the partner of the angel who past.

Parent With Gbm

by Sznnrk on Fri Aug 27, 2004 12:00 AM

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Hi, My dad - who will be 60 on Aug 29, was diagnosed with GBM just 4 weeks ago. He's had surgery to remove the main tumor, and will begin chemo and radiation next week after they fit him with his radiation "helmet?". They are going to put him on Temador for his chemo during radiation, and he'll have another round of chemo a month after his 33 radiation sessions.

Gbm Multiforme 4 Female 44

by Mslegs on Sun Jan 09, 2005 12:00 AM

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Wow, overnight, my sis in law, just moved in with her fiance due to marry this upcoming summer of 2005...On the night of Nov. 2nd, her migraine like headaches reached an all time pain level, with weird behaviour, the next morning, her fiance took her to the hospital due to strange behaviour, within a few minutes she was in ICU, with what looked like a small brain bleed front left lobe, swelling brain, a neuro was called in that afternoon, her level of conciousness diminished, he gaave her drugs to reduce swelling and only told us he would have to go into her brain to see exactly what we were dealing with, preferd to reduce swelling first, but by 6 am Nov 3, 2004, she coded, cpr was preformed, she rushed into surgery, a mass totally removed, life support utilized, here it is 2 months later, she is home, with STAGE 4 Glioblastoma multiforme, radiation, oral chem, steroids. She eats well, talks like her old self, is doing well considereing the disease she has, she has ten more radiation treatments, and begins 2nd round of Tremador tonight. As family we know her prognosis is not good, but as a rule of thumb, what can we expect as the months progress, meaning, right now she can bath herself, she does day to day normal activities, around the house, goes out to eat with family and friends, (not driving). Tires easily. So are we looking at 4,6,9 10 more months, a nursing home, sudden death, slow demise? What? Thanks for any info..Knowledge is power..thanks and God Bless you

Globalism Multiform

by Linda_S_6 on Sun Jan 09, 2005 12:00 AM

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Dear Laura, I don’t know how much you know about this monstrous disease. You have to keep in mind everyone is different, what happened to Linda (victim) may not happen to you. I will be happy to tell you anything you want to know about Linda who passed on to heaven on 4/25/2004. I wish you would talk to family and friends before I tell you about Linda’s battle. If you still want me to send you that info, please let me know and I will send you anything you want, OK? It’s scary but you’re a different person, your results may be different but for now let me give you the advice everyone gave Linda and myself. Do not give up hope, never give into this disease, you can do anything with God or anyone you feel is a higher power. You are in my prayers; share your plight with everyone who wants to help. You will be surprised at how much in tuned the loved ones of the victims are, I think they suffer more than the one fighting the monster because their plight will be over, but not so for the ones they left behind. I retired as a police lieutenant after 37 years, and I’ve seen it all or at least I thought I did until I lost Linda, who was my soul mate and I can tell you unashamedly I have not had one day without crying from a small whimper to a full blown crying spell. It hurts and I know sooner or later I have to get over it I just don’t know how or when. Please let me know your outcome whatever it may be, I will be happy to talk to you. In the meantime, pray, pray and pray some more. Don’t be ashamed to ask others to pray for your victim, cause I know anyone who reads this or any other cancer victim or survivor has already been praying. Good Luck, Laura. Connected by pain.
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