CancerCompass message board discussion started by Karen C. on 12/23/2002 http://www.cancercompass.com/message-board/message/all,633,0.htm Sat, 11 Oct 2008 00:00:00 GMT Sat, 11 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I would like to hear from anyone that has survived or been part of a family that had the above cancer. Thank you Karen C. Mon, 23 Dec 2002 00:00:00 GMT My wife was diagnosed with this ailment Sept last, has had two operations for tumor removal since and has recently completed 30 radiation sessions and two chemo sessions. We are waiting for the third temodar treatment once she passes the blood count tests. There is a book out, Surviving Terminal Cancer by Ben Williams. It's a paperback, sells for under $20 and offers good details about this type of tumor with much research. Andrew W. Andrew W. Sat, 04 Jan 2003 00:00:00 GMT Andrew, Thank you so much for getting back with me. My husband was just diagnosed on 12-4-02. I am taking it by what you said your wife's is also stage 4. My husband has had one surgery, is now taking radiation. He is unable to take chemo-because he has a kidney transplant. I am definitely going to go out and by the book you suggested. When my husband was given this diagnosis- the doctors told him the normal life expectancy is 1 year- but usually not over 2 years. Did you get the same type of results? How is your wife feeling now? Since she has had 2 tumor removal's - how fast did they grow back? What is a temodar treatment? Is that chemo? Hope to hear from you soon. Karen Karen C. Sat, 04 Jan 2003 00:00:00 GMT My husband, Ross, was diagnosed with glioblastoma multiforme stage IV and given three months to live on 11/11/02 (his 58th birthday), underwent surgery (craniotomy- total gross resection) on Tuesday 11/12/02 and was home from the hospital on Saturday 11/16/02. Went back to work on Monday, 11/18/02. He is started chemotherapy (Temador for 42 days) and radiation (34 treatments) on 12-04-02 and is tolerating all treatments very well so far. He has not been sick from the chemo nor has the radiation treatments taken a great toll on his body as of yet. All weekly blood work tests are great. He doesn't appear sick at all. He has really been amazing. He has yet to miss a day of work except for the days he spent in the hospital for surgery. He has kept up with his normal routine from day one. Up early (5am), breakfast and medication and then off the work around 6am. Work days last till 3pm, at which time he leaves and goes to radiation treatment at 3:30pm. His attitude is outstanding and physically is seems strong and fighting. His last chemo is 01-14-03 and last radiation is 01-24-03. New MRI scheduled for 02/19/03. Sherrie G. Sat, 11 Jan 2003 00:00:00 GMT Thanks for your letter about your husband. I am so glad he is doing good. Unfortunately my husband did not have good health prior to this cancer. He has had a kidney transplant plus 2 heart attacks, diabetes, and high blood pressure. So he is not doing well. If your situtation changes or you have more to tell me about your husband please write back. thank you Karen C. Mon, 20 Jan 2003 00:00:00 GMT Just thought I would check in and see how your wife is doing now. I hope better. My husband is not doing too well - but his spirit is good. Please let me know about your wife. Thank You Karen Karen C. Mon, 20 Jan 2003 00:00:00 GMT Thanks for your interest. I think I mentioned my wife is a diabetic and is currently on lots of medication. We kept an appointment at Duke Medical Center on 1-9 and met with an oncologist. A psychologist also tested her. She did not do well with the testing. The interview with the oncologist was helpful because she went there very tired and spent much time sleeping day and night. They had taken her off a steroid medication in mid Dec. and upon seeing her decided to resume that medication. They had the benefit of an MRI comparison using earlier Oct. films with one done in the middle of radiation about Dec. 15. They claimed they thought the tumor had stabilized from new growth, were not real sure, but decided the medication would help giving relief to inflammation thus allowing her to get back an appetite, also possible better progress with writing loss, puzzle solving, visual benefit, more positive walking (she was being interviewed in a wheel chair and had insisted on that help from where the car was parked). They suggested a respite from further chemo treatment and ordered blood counts once a week for 3 months and a metabolic comprehensive blood test once a month. They did indicate they were going to switch her from temodar chemo treatment to a process called ccnu. The reason given was to keep any tumor growth from developing immunity to the chemo treatment. The ccnu has not started as yet. Also, her platelet count dropped to 25000 a few days before going to Duke which required infusion of an outside supply. The latter also had something to do with the Duke decision to hold off on further chemo treatment. Thus, we are waiting to hear if they will resume the chemo. In the meantime my hunch is that Maggie is slipping away more and more. We had an MRI done on Thursday 1-16 and we are waiting to hear from Duke what their analysis is. I wish I could be more helpful. Andrew W. Andrew W. Tue, 21 Jan 2003 00:00:00 GMT I have heard from Duke regarding MRI done on Thursday 1-16. They indicate there has been recession of the tumor and they intend to continue the temodar chemo treatment which will likely occur in next few days. They also state there is evidence of inflamation. They are apparantly reviewing the steroid medication in effect with the idea of increasing the strength. Andrew W. Andrew W. Thu, 23 Jan 2003 00:00:00 GMT There are survivors of brain cancer. Go to www.ncrf.org and read the testimonials. Use antioxidants and coral calcium. Change the diet - go natural - no sugars, meat, milk, eggs. Eat healthy, take supplements and PRAY! Judy Jim T. Fri, 24 Jan 2003 00:00:00 GMT Thanks for writing and I am very interested in reading the info you suggested, however, I can't find a link to testimonals. Would really like to see what's going on on this website. Please send more info than just --- www.ncrf.org Sherrie Sherrie G. Sun, 26 Jan 2003 00:00:00 GMT Just letting you know that my husband lost his battle with brain cancer on May 13th - he gave a good fight, but was unable to withstand the tumor. How is your wife doing? Karen Karen C. Mon, 19 May 2003 00:00:00 GMT Dear Karen: My sympathies to you. Maggie is still alive but is considered to be terminally ill. She is in a nursing home and has been since early March. The nursing home with my approval has asked Hospice to help. She has lost much ability to speak but still does recognize some who visit but has trouble recalling how to pronounce the name. She is eating well but needs to be fed. The nursing home and hospice have approved giving her pain medicine. However, I believe she wants to talk and gets frustrated not being able to do so. Because of the same she creates some disturbance which the nursing staff calls "moans" but which I think are much less moans and more simple frustration. The pain medicine puts her to sleep. It's hard to know how much time she may have. One thing is certain, it is a terrible ailment. Reading over some of the answers you received I believe it was a Judy who said survival is possible by certain supplements and a change in diet. I wonder if she has any statistics on the survival rate by doing the same. Thanks for your interest and again do hope you are managing as well as possible. I am sure it is difficult. Please feel free to contact me. Andrew W. Andrew W. Tue, 20 May 2003 00:00:00 GMT I too have felt great. I had to have a 2nd surgery after 8 months, but the tumor was very small. They put radioative seeds in my brain and now I will start a new chemotherapy tomorrow. Would love to keep hearing how he is doing. Darla Darla Sun, 23 May 2004 00:00:00 GMT Sherrie, How is Ross doing? My dear friend was just diagnosed on 1/26/05. We are devastated. He has 4 small tumors -- 3 on one side of the brain, and one on the other. They are inoperable. We are scheduled to see the oncologist tomorrow. Charlotte Tue, 01 Feb 2005 00:00:00 GMT My husband Joe was diagnosed with stage 4 GBL on the left parietal lobe on 11/9/04. He is 46 years old and other that hyper-tension and workaholism, he was relatively healthy. He had banged his head 2 weeks prior to his diag. received stitches and a CT scan that supposedly showed a mild concussion. a few days after removing the stitches he had excruciating pain with vomiting. I noticed one pupil was larger than the other and rushed him to the hospital. They diagnosed stage 4 GBL after an emergency craniotomy to reduce swelling in his brain. they removed one tumor completely and resected almost all of the second. He had one out of three treatments of intra-arterial chemotherapy at one hospital. (where he had the surgery) Then decided to go to Sloan Kettering because everyone kept telling him It's the best Cancer treatment center! I on the other hand believe different people do well at different centers. I am treating him in conjuction with SK's Radiation and temodor, at home with several homeopathic remedies and herbs along with megavitamins and organic foods. He developed Bloodclots in both legs as well as Pulmonary embolisms in both lungs. He is doing well so far, considering. and his first MRI since the operation has shown the tumor is smaller. We pray it keeps going this way. We will pray for you as well. Joenlea Mon, 21 Feb 2005 00:00:00 GMT Dear Darla, did you have traditional radiation treatment prior to having the seeds? The doctor's had told us that my husband has met his lifetime quota of radiation for the brain after recieving 36 standard radiation treatments after his first surgery. I am wondering if seeds are still an option for him if needed down the road? Sent with prayers, Lea Joenlea Mon, 21 Feb 2005 00:00:00 GMT Research published by Dr. Sontheimer from the University of Alabama. This med already fda approved for Chrones and Rheumatoid arthritis showed tumor halt or reversal in imunosupressed human glioma induced rats after 48 hours. My wife was diagnosed and had 5cm by 5cm resection in june. Is now in fourth week of radiation and temodur. Started sulfasalazine three weeks ago. up to 3.5 grams a day and will increase to 4 grams as tollerated. Sulfasalazine bypasses the blood brain barrier and suppresses "system X" which produces death in normal healthy tissue and manufactures a substance that protects the gbm from normal cell death or harm from free radicals. Radiation produces a temporary state of high free radicals to induce chromosomal damage to interfere with replication. The rats in this study just got sulfasalazine. we are hoping the combined effect will be dynamic. Anyone wanting to know more can google sulfasalazine and glioblastoma. I have been coresponding with Dr. Sontheimer and they are looking at a dose of 4-6 grams a day over 3-4 dosings per day. We wont have any imaging until 2-4 weeks after the 6 week course of radiation and temodur. Oncologist says they can't get a good picture while radiation is ongoing. I will repost developements here. Cidorov Tue, 23 Aug 2005 00:00:00 GMT My mom was diagnosed last year (April 2005), had surgery in June 2005, they could not remove the whole tumor, and then received radio for 1 month, and is now on her 14th cycle of Temodar. She is fine, except for side effects related to steroids. Her life expectancy was 6 to 12 months after diagnosis, its been over a year and thanks God she is doing fine. Annemarie Annamarie Mon, 12 Sep 2005 00:00:00 GMT Hi I would love to hear the progress and results of success (hopefully!) of this. My father is looking at a similar treatment as "tradtional" chemo has largely failed to date. Thanks Almel Thu, 03 Nov 2005 00:00:00 GMT After RT/Temodar, during which time she took SSz she became nuetrpenic and had an infection. We stopped everything while in the hospital. She is much better now and has finished five days of high dose of Temodar. While in the Hospital she had an MRI and it showed that the tunor had reduced 40%. This is very good news. Unheard of. We were told the best we could hope for after RT/Temodar was no growth. We have waited to see how she tollerates the 5 of 28 day cycle of Temodar to restart the SSz and that will probably happen this next week. Doctor willing or not. We are very happy so far and have less than nothing to lose. This is a drug that is well tollerated in human beings. I think most Docs have a hard time believing that anything involving their highly superior understanding of this very complex and baffling disease could be so simple. Don't let their egos stop them or you from doing what is clearly right. Good luck. Report back please. Bob Cidorov Thu, 03 Nov 2005 00:00:00 GMT My wife was diagnosed with GBM level 4 in 1987 at age 25. She was told that she had 18 months. The tumor was on the left temporal lobe and was resected. She had full brain radiation and chemo (two kinds--not sure what). I met her in 1991. The doctors were amazed that she was still alive. I don't know how many times we've been told that the diagnosis must be a mistake. But it wasn't. This been confirmed. The treatments had caused some side effects--some short term memory problems, slight speech issues, loss of some hair, and mild seizure disorder for which she tood medication. But she was well and remained so pretty much for ten years. We got married in '93. Her seizure disorder got worse in the mid-nineties. In '97 she had a major problem with status epilepsy--uncontrolled seizures and was in the hospital for months and then rehab for six months. She recovered fairly well, but sustained brain injury. Still, she could walk, take care of herself, talk (with difficulty) and so on. This year, she couldn't stand up one day and they discovered a large tumor, not a GBM, but an anaplastic meningioma, thought to be caused by radiation treatments. She has not been doing well since the surgery. I guess I want to get across a few points: 1) Doctors speak in statistics. They don't know. My wife always thought positively. 2) Survival of GBM is a relative thing. If you do survive long term, the side effects of radiation treatments unfold over many years, even decades. These include seizures, brain atrophy and premature aging, and other problems, such as dementia. 3) For you survivors who have had full brain radiation--there may be things you can do now to help prevent some effects down the road. Knowing about it in advance may help you to head off some disasters (regular scans can help catch new tumors; close monitoring of seizures can help uncontrolled seizures etc). Talk to the radiation oncologist about it. 4) If you can avoid full brain radiation and go for more precisely directed treatment, consider doing so. This may not be possible, but it's worth looking into. 5) Make your doctors talk about long term effects of the treatments--they tend not to because they think you'll die before side effects set in. So you have to push them to talk about it. Thanks for reading my long message. Good luck to you all. I am interested in hearing about other long term BGM survivors and how you are doing with radiation side effects. albertoid Albertoid Sat, 17 Dec 2005 00:00:00 GMT hi my name is alline i have 24 year old cousin that diagnose with glioblastoma 2 years ago she had one surgery when she was first diagnose she had radiation and chemo plus esteroid she also would go to mri every couple mouth the tumor use to be the side of a egg when it first start but after a year it got small as olive she did great for the follow year but this year we had bad news 3 weeks ago her face sart getting kind twisted to the side we decide to take her to the hospital her tumor glow back bigger she had a another operation but even then the doctor say is just to prolong her and that she only had less then 6 mouth to live with her first they also they say that they didnt aspect her to live more then 2 years from the first place they say that they will not perform another operation because she will go in acoma for life they also wont recomend radiaton she is very agraveted and also her memory is shorter then 3 minutes. thanks for readeing my long letter i will take any info or testimony that any body would have. Alline Sun, 12 Mar 2006 00:00:00 GMT Hi - My dad was diagnosed with GBM4 (inoperable) and I am now desperatelly searching the internet to find hope. Came across your message and was wondering how is the treatment going? Is the sulfasalazine working? Any chance you could provide me with information on how to contact Dr. Sontheimer? Hope your wife is doing well. Best of luck! PS: Here is a Yahoo Group I came across for those of you who are looking for alternative approach soarce. It is definitelly worth reading http://health.groups.yahoo.com/group/FlaxSeedOil2/message/32640 Alzbeta Wed, 15 Mar 2006 00:00:00 GMT My mother was just diagnosed with Glioblastoma Multiforme, or astrocytoma stage IV. She just had surgery this week, and my family (except me) are meeting with the surgeon/oncologist today to discuss treatment. I am interested in any/all information related to this, in terms of what alternative treatments, or combination therapies that have worked for you. We are willing to try anything to maximize her quality of life, and find a cure. I am a physician assistant in cardiac surgery in Boston Thanks Chris Siddhartha Thu, 13 Apr 2006 00:00:00 GMT My best buddy was diagnosed with glioblastoma multiforme three weeks ago. The doctors performed brain surgery and removed 95% of the tumor. He begins target radiation in two weeks and is being seen by the neurological oncology team at Duke. I am a very close friend to both Ken and his wife. They have no children or family in the area. I would like to know how I can help them the most. Also, I understand that diet is extremly important. If anyone has any suggestions, please offer them. Ken is only 48 and is in excellent health, but he is overwhelmed by this scary news. Thank you for your help. Sarah Anne Sun, 23 Apr 2006 00:00:00 GMT My husband was just diagnosed with a grade 4 Glioblastoma Multiforme, which is inoperable. We were told to start regional radiation and Temodar ASAP. It was also suggested to have a MGMT analysis done of the tumor biopsy in order to determine if a specific enzyme exist. If the tumor does not contain the enzyme, he would be more likely to respond favorably to chemotherapy. We were also told that the drug Avastin has been used on brain tumors with some positive results. Unfortunate it is not FDA approved for brain tumors (only colon cancer) so insurance companies will not pay for the drug, which is very expensive. I was told it would cost 10,000 dollars every two weeks. Chris58 Mon, 24 Apr 2006 00:00:00 GMT My husband has multi-focal GBM and saw recurrence 4 months after radiation, temador and tarceva (on a clinical trial). He has had 3 off-label Avastin infusions, 2 in combination with Carboplatin. Except for his cancer, he is one of the healthiest 63 year olds in the world. He has had only adverse effects since taking the Avastin. The first was a dental abcess which went on for about a month and required tooth extraction. Once he got off the antibiotics, he resumed the Avastin and about 30 hours later, we were calling the paramedics for a life threatening pulmonary emboli. He is now out of the ICU and eight days in the hospital and on heparin. No one in the treatment group has ever heparinized a patient with Avastin on board, which is terrifying since Avastin messes with blood vessels. His pulmonary emboli are getting better and he may be home tomorrow on oxygen. His risk of an intracranial hemorrhage is, and will remain, significant. I learn that GBM patients have a 2 1/2% risk of thromboembolism (the tumors evidently make a protein that makes one hypercoagulate--leading the clots). Genetech reports that this risk doubles with Avastin on board. So now my husband has nearly died gasping for breath, and he may still (if a clot gets past the vena cava filter that is now in place). He now may also die with no warning of a stroke (intracranial hemorrhage). And then there is the glioblastoma. We paid $27K out of pocket for the Avastin. The current hospitalization will likely approach $100K, for which we are insured. We will spend at least some weeks of the time we have left trying to recover from the pulmonary emboli. My husband was weakening but he could still work out on the treadmill and was driving. Now he cannot shave without oxygen on. I would not consider this the "benign side effect profile" that was presented to us. While we went into this with knowledge that Avastin was experimental, I fear that we overweighted the potential for good (because no one knew that it wouldn't work) and underweighted the potential for harm (there was no organized listing of risks since it has not been tested and reported on). While our doctor was straigtforward with us and we are not blaming him, I wish that we had been more cautious. Perhaps you may want to be. b in California Mon, 15 May 2006 00:00:00 GMT My husband was diagnosed with Glioblastoma on 5/3/06 and had first surgery on 5/10/06. He was scheduled for rad/chem on 5/30/06, but we heard of a clinical trial at Duke Med Center and went there. Had 2nd surgery by Dr. Alan Friedman at Duke on 6/8/06 and he successfully removed 100% of the tumor "that he could see". Even though we know this was done, we know the spider legs are still growing deep within the brain. We were tested for 2 types of clinical studies, but unfortunately he did not qualify. We are home now and starting with 33 radiation treatments / 42 doses of Tremodor oral chemo today. We are a little nervous about results, but are keeping our hope and praying a lot. We strongly believe in the power of prayer. He will go back to Duke 2 weeks when this is finished. They have more clinical studies / protocols that can be followed. Has anyone out there been thru any of the clinical studies at Duke with success? We are so scared!! Debi Bills1gal Thu, 06 Jul 2006 00:00:00 GMT My very healthy father suddenly had trouble reading words and was slurring his speech. He drove himself to the E.R. We were suprised to hear that he had probably had a stroke. Two days later we were wishing it was a stroke. He was told he had a glioblastoma very large and to make matters worse it is located in his speech center. He was in the E.R. on 4/29/06 and had brain surgery a week later. They were able to remove only 40% due to the location. He has undergone 40 days chemo and six weeks radiation. He has been in the hospital numerous times now. Mostly due to brain swelling and steroid toxicity. Very difficult to keep his levels under control. He has now been in the hospital for two weeks. His radiation and chemo are complete. We have been praying for some remission but he just can't seem to eat or take hardly anything by mouth. He is in for severe dehydration and now has a N.G. TUBE. It is all we can do to get his daily meds into him with applesauce. He is also on a thick liquids diet. does anyone have any suggestions? NO ONE SEEMS TO KNOW WHY HE'S NOT EATING . He has lost so much weight and in two months is now skin and bones. It is hard for him to express whats going on due to the speech center being affected. Has anyone dealt with a similar problem? The Greatest Physician is Wed, 12 Jul 2006 00:00:00 GMT Hi, This is my first time visiting the site and saw your message. We just found out my dad, age 48, has the Glioblastoma Multiforme tumor. The onologist telling us that he has two options. Either the standard radiation and chem. procedure. Or participate in this new trial study which they think it might help prolong his survival rate, but also not sure. This study has two options he can choose from: arsenic troxide or RTOG (high-volt of radiation). We don't know what to do. We feel safer going with the standard procedure, but if this study, if successful, can prolong his life, it is worth the risk. But that is the thing, "if." We can't get any comforting thought on this subject. But we need to make the decision on which procedure by the end of this week. I feel so lost right now...what are we to do???? Roses4jing Tue, 18 Jul 2006 00:00:00 GMT Hi, My dad was diagnosed with Glioblastoma Multiforme last year May and they operated him in india. They gave him radiation and tamadol. He lost lots of weight as the apetite was very less so he wouldnt eat much. This year in Feb they found 2 small spots kind of thing and gave heavy dose of radiation called SRS. In may they agian found tumor and operated on him. Since then he has lost lot of his memory and ability to speak along with little paralysis on his right hand and leg. He is diabetic but we are fighting with the disease. Anybody has same kind of experience please let me know how to handle it. Right now he is less than 50 kgs and too weak to walk or do anything. Thanks Manoj Man_canada Wed, 26 Jul 2006 00:00:00 GMT Hi, How is your dad? I just read your msg,and wanted to tell you my info . My mom was diagnosed Feb 12th 2006 with this monster, and is doing awesome! I thought that maybe I could help! Stacy Stacyjoel Mon, 07 Aug 2006 00:00:00 GMT I hope she is seing Dr.Peter Black at Brigham and Womens he is amazing i was diaganosed 9/05 with a gbmstage 4 here it is a year later i am doing wonderful . They were able to get all of the tumor it was encapulized, attitude is key. There have been long term survivors, I know I will not let this get me. I will be in the medicals books as the longest survivor. Attitude is everything Caspalena123 Tue, 29 Aug 2006 00:00:00 GMT My husband was diagnosed almost 4 years ago with this dreadful disease. He has been clear for 3 years until the recurrence last 11/05. He is now taking Avastin which is not yet FDA approved. We will know in October if this is working for him. For those who want to have Avastin for Glioblastoma, ask your oncologist to enroll in SPOC program where they will cover expense if the insurance rejects it. Gennie Thu, 31 Aug 2006 00:00:00 GMT Hello everyone My husband was diagnosed with GBM on 11/20/06. He had surgery, radiation and is now on Temador, what is Avastin?? His speech has been affected and also his eye sight, but he is not giving up!!! Praise the Lord......... Laceyjo48 Fri, 01 Sep 2006 00:00:00 GMT how old is your mom Donnaf Sun, 03 Sep 2006 00:00:00 GMT Avastin is now being used for GBM patients and seem to be working well. It is actually used for colon cancer but people with GBM seem to be responding well. My husband is being treated with it along with CPT 11 combination. Gennie Thu, 07 Sep 2006 00:00:00 GMT Thank you Gennie. Did your husband take Temodar? My husband is taking Temodar every 23 days for 5 days. Laceyjo48 Thu, 07 Sep 2006 00:00:00 GMT Yes he did 3 years ago (it worked and he was clear for 3 years which is a miracle) and with Avastin as a new drug for GBM he did not take it again with this tumor recurrence this time. Gennie Fri, 08 Sep 2006 00:00:00 GMT My husband was diagnosed at age 55 3 years and 7 months ago. He had surgery, radiation, BCNU. He did alternative therapies as well -vegetarian diet, energy treatments (like reiki) and had a fighting attitude. He has been on anticonvulsant therapy since the surgery and remained high functioning.The fatigue and short term memory loss, mild seizure issues finally made him quit work (the center of his life) a type A personality about a year and a half ago. He has had MRIs every 2 months which have not changed. Two weeks ago he had a grand mal seizure, & trileptal was added to his treatment. So far his neurologist is not talking of a recurrence but he gets scanned again soon. Two years ago he tried Temodar (preventatively) but he was sick as a dog and did not tolerate it. My question is whether this bone tired fatigue, much worse in the past 2 weeks is due to the anticonvulsants. His balance is suddenly worse, his stamina, short term memory are worse. His appetite has increased, always hungry, gaining weight, but does still not eat meat, or sweets. He naps 3 times a day and 10 hours at night. We've been so optimistic beating the odds. Does anyone recognize any pattern among long term survivors? We might be in denial, because he has done so well but we don't want to be blindsided,still have things to do! Any thoughts? Ohio55 Mon, 25 Sep 2006 00:00:00 GMT Sorry to hear your husbands symtoms have worsened, but at the same time, so glad to hear how well he is doing. My husband was diagnosed on 01/05/04 and is still doing very well. In 1999 my husband had an accident on the job and fell. It caused a small tear on his brain that caused seizures. With us, the seizures came 5 years before the diagnosis. For a while the meds kept him from having seizures and all was well we thought. Then he started seizing more and more, becoming dioriented, clumsey, etc. His doctor kept upping doses on meds to try and get seizures stopped, but to no avail. We thought all the new symptoms were med related, and your husband's very well could be because having to take high doses of meds definately cause the tiredness and grogginess.But I would get an MRI as soon as possible. Dave's tumor almost took his life before we found it because even his doctors just assumed it was all because of his meds. This disease can be so aggressive it's best to stay on top. Let me just say too, one of the most important lessons I've learned through our experience is, before every doctor visit pray that the Lord will put a hedge of protection around your mind so that fear and dread can't enter in. You MUST stay informed and not deny what is or isn't happening healthwise, but there isn't anything the doctor can ever tell you that can change who God is. GOD IS GOD whether you are sick or healthy. Knowing the truth won't change God's hand on you. You have to trust Him. I refuse to let fear and dread of what may happen rob me of what I have today. Today is one more day I was blessed to have my wonderful husband with me and I know every day is a gift. You're in my prayers, and I wish you the best. Blessed4life Fri, 20 Oct 2006 00:00:00 GMT My wife was diagnosed with several forms of cancer with the brain disease being the most significant. Last January she lost the ability to speak and basically seized, was hospitalized and recommended for hospice. My wife reacted poorly to the various anti nausea drugs such as Zofran and Anzemet. I found that she was served better with simple phenergan and very low amounts of Anzemet. I have had to cut the lowest strength in quarters which seems to work well for her. After recommendation for hospice I pulled out all the stops doing as much research and creative thinking as possible. I piggybacked on some anecdotal successes and refined them into an alternative treatment program. My background in medicine and science finally provided some real benefit. My wife was so sick and weak that getting the nutrients and immune system enhancers into her was a real challenge. Tumors in the frontal portion had altered her sense of taste and odor so that everything basically smelled like odors of the bowel to her. I found one taste/smell that she seemed to be able to tolerate and worked from there. In her case orange smelled okay and I used orange oil to mask the glyconutrients in water. I was able to progressively get more of the nutrients in and she responded quite favorably. My wife has recovered quite well and has even been able to even mow our lawn. She has recovered some of her lost vision to a point that she only needs glasses for the small print now. unfortunately she lost hearing in her left ear completely. But lately she has appeared to get some level of hearing back in that ear as well, not a lot but some. I am not into multilevel marketing schemes but some of the products I have utilized are primarily marketed that way. I have reduced my monthly costs on supplements but they are still expensive. In my case I cherish every moment with my wife and it has been well worth the sacrifice. To save costs I load "00" capsules with my formulation which is the primary supplement that my wife takes. My wife was initially scheduled to have gamma knife surgery but was found to have multiple tumors as well as cancer of the lining or menenges. She was then given whole brain radiation and spinal radiation for tumors on her spine which had made it impossible for her to walk. The spinal radiation appeared to have been the most successful with almost immediate benefit. It was only a month after the whole brain radiation that the medical specialists recommended hospice. I am writing this late at night and I know it is probably rambling at this point. But my wife has done quite well for someone that was told she wouldn't live to see her grandson born in June. Her oncologist now says to just keep on doing what we are doing with the glyconutrients because he knows the chemo cannot have accounted for the turnaround. Pioneer Fri, 10 Nov 2006 00:00:00 GMT I just read your message and thought I might have some information that could help your dad. I have recently been diagnosed with a glialblastoma multeforme stage 4 tumor. Most of the tumor was surgigaly removed and I am currently doing radiation and chemotherapy at the same time. I wake up every morning by 9am. I take 1500mg of kepre for siezures, 4 mg of dechodron(steroid)for brain swelling and 30 mg of pepcid to protect my stomache form ulcers. Then I eat breakfast. I have to finish eating by 9:30. This allows my body 2hrs to digest before taking my anti nausea medicine. At 11:30 I take kytril(anti nausea). At 12:30 I take 135mg of Temador(Chemotherapy) At 1:30 I go recieve my radiation treatment. The Kytril is amazing! I have not felt sick at all. THis has enabled me to keep my appetite. The temador is very tolerable. As for the radiation, I do feel fatigued 2-4 hours afterward. Usually I will eat a meal about an hour after radiation. This gives me a little more energy. I do not know if the treatment and meds are working yet becouse I am only 4 weeks into my radiation. See if your dad can take Kytril for the nausea. It is working for me, I hope it can work for him. Best of luck. I will post again when I know more about my situation. Johnjr. Sun, 12 Nov 2006 00:00:00 GMT I just read your message and thought I might have some information that could help your dad. I have recently been diagnosed with a glialblastoma multeforme stage 4 tumor. Most of the tumor was surgigaly removed and I am currently doing radiation and chemotherapy at the same time. I wake up every morning by 9am. I take 1500mg of kepre for siezures, 4 mg of dechodron(steroid)for brain swelling and 30 mg of pepcid to protect my stomache form ulcers. Then I eat breakfast. I have to finish eating by 9:30. This allows my body 2hrs to digest before taking my anti nausea medicine. At 11:30 I take kytril(anti nausea). At 12:30 I take 135mg of Temador(Chemotherapy) At 1:30 I go recieve my radiation treatment. The Kytril is amazing! I have not felt sick at all. THis has enabled me to keep my appetite. The temador is very tolerable. As for the radiation, I do feel fatigued 2-4 hours afterward. Usually I will eat a meal about an hour after radiation. This gives me a little more energy. I do not know if the treatment and meds are working yet becouse I am only 4 weeks into my radiation. See if your dad can take Kytril for the nausea. It is working for me, I hope it can work for him. Best of luck. I will post again when I know more about my situation. Johnjr. Sun, 12 Nov 2006 00:00:00 GMT I just read your message and thought I might have some information that could help your dad. I have recently been diagnosed with a glialblastoma multeforme stage 4 tumor. Most of the tumor was surgigaly removed and I am currently doing radiation and chemotherapy at the same time. I wake up every morning by 9am. I take 1500mg of kepre for siezures, 4 mg of dechodron(steroid)for brain swelling and 30 mg of pepcid to protect my stomache form ulcers. Then I eat breakfast. I have to finish eating by 9:30. This allows my body 2hrs to digest before taking my anti nausea medicine. At 11:30 I take kytril(anti nausea). At 12:30 I take 135mg of Temador(Chemotherapy) At 1:30 I go recieve my radiation treatment. The Kytril is amazing! I have not felt sick at all. THis has enabled me to keep my appetite. The temador is very tolerable. As for the radiation, I do feel fatigued 2-4 hours afterward. Usually I will eat a meal about an hour after radiation. This gives me a little more energy. I do not know if the treatment and meds are working yet becouse I am only 4 weeks into my radiation. See if your dad can take Kytril for the nausea. It is working for me, I hope it can work for him. Best of luck. I will post again when I know more about my situation. Johnjr. Sun, 12 Nov 2006 00:00:00 GMT I am also looking for long term survivors. My husband was diagnosed in October with GBM. He had the tumor removed in surgery, and is currently in middle of a focused radiation and Temedor regimin. he also takes Kytril to prevent nausea, and Keppra to control seizures. When he eats, sometimes he gets a little twitching, so he stops for a moment until it passes. He kept gettting smaller seizures, but found out that by spreading out his Keppra instead of just morning and evening, he can prevent them. We also discovered that he can stop one that is beginning to start by taking Keppra right away. He is also taking a low dose of Decadron. We were hoping to get on Avastin as well, but there were no cells left from the tumor, which were needed to be in the clinical trial. We also can't go off label, as the drug is apparently temporarily unavailable for off label for now (at UCLA) He seems to be doing pretty well, but has fatigue and hair loss. He also seems a little weaker, as his hands aren't as steady. But he has a good attitude and we will fight this. He does occasionally get cranky, and is a little harder on me and our daughter, but is very friendly and courteous to everyone. I am hoping things change and we can to take Avastin before the GBM reoccurs, as I hear this drug has been very beneficial to colon cancer patients. A couple of things I have learned - do your research - the first hospital said it was inoperable. We then went to UCLA and it was successfully removed. Keep informed, and dont be afraid to ask a lot of questions. It is super important to have a patient advocate, ( I am for my husband) to keep an eye on what happens in the hospital, and keep things straight (ie - NO dilantin, if you want to be eligible for certain clinical trials. I had to be adamant about that with some doctors) My husband yearns to be normal, and have fun watching football on TV with his friends, without getting grilled with tons of questions about his treatments. He prefers to leave that up to me. Dont know if other patients have those types of feelings or not. Gaylec Fri, 17 Nov 2006 00:00:00 GMT My husband is doing better. Changing his anticonvulsants seems to have helped a lot so he is not falling down! He is also trying Ritalin for some energy. He was diagnosed in early 03 so we optimistically approach 4 years of survivorship! He said from day one that he did not accept the dire prognosis. That is what I would like others to know- he made up his mind to be in that miniscule group of people who beat the odds,at least for now. We cherish every day. Ohio55 Wed, 29 Nov 2006 00:00:00 GMT  On 8/23/2005 Cidorov wrote:Research published by Dr. Sontheimer from the University of Alabama. This med already fda approved for Chrones and Rheumatoid arthritis showed tumor halt or reversal in imunosupressed human glioma induced rats after 48 hours. My wife was diagnosed and had 5cm by 5cm resection in june. Is now in fourth week of radiation and temodur. Started sulfasalazine three weeks ago. up to 3.5 grams a day and will increase to 4 grams as tollerated. Sulfasalazine bypasses the blood brain barrier and suppresses "system X" which produces death in normal healthy tissue and manufactures a substance that protects the gbm from normal cell death or harm from free radicals. Radiation produces a temporary state of high free radicals to induce chromosomal damage to interfere with replication. The rats in this study just got sulfasalazine. we are hoping the combined effect will be dynamic. Anyone wanting to know more can google sulfasalazine and glioblastoma. I have been coresponding with Dr. Sontheimer and they are looking at a dose of 4-6 grams a day over 3-4 dosings per day. We wont have any imaging until 2-4 weeks after the 6 week course of radiation and temodur. Oncologist says they can't get a good picture while radiation is ongoing. I will repost developements here. Have you had any success with Sulfalazine? I have GBM stage IV and it looks promising but I have not heard any success stories.Your response is greatly appreciated!Manfred Manfred Mon, 08 Jan 2007 00:00:00 GMT  On 8/31/2006 Gennie wrote:My husband was diagnosed almost 4 years ago with this dreadful disease. He has been clear for 3 years until the recurrence last 11/05. He is now taking Avastin which is not yet FDA approved. We will know in October if this is working for him. For those who want to have Avastin for Glioblastoma, ask your oncologist to enroll in SPOC program where they will cover expense if the insurance rejects it.wanted to see how your husband was doing?  I lost my mother to this disease 4 years ago and she was amazing through it all! Klmot Tue, 09 Jan 2007 00:00:00 GMT I have stage 4 glioblastoma multiforme in summer 06 and my doctors recently said my cancer is inactive Daniellek Fri, 19 Jan 2007 00:00:00 GMT Hi-  I read your message and wanted to know how your husband is doing? Has he regained any function? My father was diagnosed exactually a year ago. He was doing very well until the day before Thanksgiving when his tumor began to bleed. In the last two months his function has gone from normal to that of a cripled old man. His is constantly tired, can hardly walk or get up on his own, and has lost the ablilty to write legibly. Do you have any advice as to how to help him regain function? I appreciate any information you have.  Thanks, Meaghann Meaghann Wed, 24 Jan 2007 00:00:00 GMT Please let me know how you are doing with your treatment. My husband just started on Tamador, Radiation and an experimental drug which is akin to Avastin.thanks, Jadey Fri, 02 Feb 2007 00:00:00 GMT  On 11/10/2006 Pioneer wrote:My wife was diagnosed with several forms of cancer with the brain disease being the most significant. Last January she lost the ability to speak and basically seized, was hospitalized and recommended for hospice. My wife reacted poorly to the various anti nausea drugs such as Zofran and Anzemet. I found that she was served better with simple phenergan and very low amounts of Anzemet. I have had to cut the lowest strength in quarters which seems to work well for her. After recommendation for hospice I pulled out all the stops doing as much research and creative thinking as possible. I piggybacked on some anecdotal successes and refined them into an alternative treatment program. My background in medicine and science finally provided some real benefit. My wife was so sick and weak that getting the nutrients and immune system enhancers into her was a real challenge. Tumors in the frontal portion had altered her sense of taste and odor so that everything basically smelled like odors of the bowel to her. I found one taste/smell that she seemed to be able to tolerate and worked from there. In her case orange smelled okay and I used orange oil to mask the glyconutrients in water. I was able to progressively get more of the nutrients in and she responded quite favorably. My wife has recovered quite well and has even been able to even mow our lawn. She has recovered some of her lost vision to a point that she only needs glasses for the small print now. unfortunately she lost hearing in her left ear completely. But lately she has appeared to get some level of hearing back in that ear as well, not a lot but some. I am not into multilevel marketing schemes but some of the products I have utilized are primarily marketed that way. I have reduced my monthly costs on supplements but they are still expensive. In my case I cherish every moment with my wife and it has been well worth the sacrifice. To save costs I load "00" capsules with my formulation which is the primary supplement that my wife takes. My wife was initially scheduled to have gamma knife surgery but was found to have multiple tumors as well as cancer of the lining or menenges. She was then given whole brain radiation and spinal radiation for tumors on her spine which had made it impossible for her to walk. The spinal radiation appeared to have been the most successful with almost immediate benefit. It was only a month after the whole brain radiation that the medical specialists recommended hospice. I am writing this late at night and I know it is probably rambling at this point. But my wife has done quite well for someone that was told she wouldn't live to see her grandson born in June. Her oncologist now says to just keep on doing what we are doing with the glyconutrients because he knows the chemo cannot have accounted for the turnaround. My friend was just diagnosed with a stage 4 glioblastoma multiforme.  I am a nutiritonist and am working to help complement her chemo and radiation treatments.  What "glyconutrients" did your wife use that have led to your wonderfully successful outcome?     Helayne Sat, 24 Feb 2007 00:00:00 GMT I am a 42-year-old male, and I have glioblastoma multiforme, stage 4. My cancer was diagnosed in late October 2003, after I had a baseball-sized tumour resected from the right parietal lobe of my brain. My prognosis was 18-months to two years. I am now in my fourth year. Three weeks after surgery, I started a six-week regimen of daily radiation treatments. I tolerated the first three weeks of radiation well, but by the fourth week, I definitely began to experience a sigificant amount of fatigue. At the end of the six weeks, I was napping at least two hours a day. I also came down with Thrush, a side effect that would afflict me more than once during my subsequent chemo treatments. At the end of January 2004, I started monthly chemo treatments, taking Temodar twice daily for five days, with a break of 21 days in between. I initially took Kytril to prevent nausea, but eventually switched to Ativan. Kytril made me so constipated that I went for days without a bowel movement. and when I was able to go, the movements were unbelievably painful. The situation became so dire that I had to have surgery to repair a bleeding fissure caused by the hard stools. I know that these details are indelicate, but I feel I should be honest about my experience. I continued chemo treatments until October of 2006, at which point, my hematologist agreed to allow me a three month hiatus until my next MRI that December. My scans have consistently shown no significant changes since early 2004. The MRI in December was just the same, so I have been permitted to again forgo chemo until my next scan, which will occur in the next few days. The tumour I had resected in 2003 damaged the area of my brain which controls the left side of my body. As a result, I have lost the ability to use my left hand with any precision. I used to play the piano, but I can do so no longer. I must also use a cane and walk very carefully, because often my left leg or foot fails me, causing me toI trip or fall. The radiation and chemo have had an effect on my stamina, my memory, and my cognitive abilities. Despite these impairments and losses, I count myself blessed to still be alive, considering how few with glioblastoma survive as I have. I hope my story will be of interest to others visiting this site. I have taken no special vitamins or supplements to survive this cancer. I have followed my doctors' directions and have made a habit of getting as much rest as I can. At times I have pushed myself to maintain a normal routine, and at other times, I have let myself spend the day in bed. I am no Lance Armstrong. I didn't run marathons before the cancer, and I don't intend to run one now. I think the essential thing is to keep on living as best as you can. Don't allow the cancer to define who you are. As much as you are able, be the person you were before you were diagnosed with glioblastoma multiforme. Brian p Mon, 19 Mar 2007 00:00:00 GMT Hey Brain - thanks very much for your encouraging message.  My wife Rose is three and a half months post-op for her GBM and has undergone radiation with concurrent temodar.  Her first MRI after the six weeks of radiaiton was clear and looked good.  Now she is going to start Temodar on the 5 days on and 23 days off routine.   I wanted to ask you how come you were taking Temodar twice a day instead of once a day?  And about the Ativan as an anti-nauseau med?  If you would please get back to me I would really appreciate it.  Also could you tell me who your doctor and where they are located,   thanks,  mike Mtp6061 Wed, 21 Mar 2007 00:00:00 GMT Mike, Sorry to hear your wife has glioblastoma, but it sounds like her condition is stable, which is encouraging. With this disease, it's essential to take things one day at a time,and not to look too far ahead. I live in South Bend, Indiana. My hematologist is Dr. David Taber. When I started chemo, I took the full daily dose at once, but did not tolerate it very well. I switched to two pills and things were better. I would come home from work at 3:45, take the first pill, and then nap for an hour or so. I would take the second pill just before bedtime, that way I could sleep off the effects. I preferred Ativan to Kytril, because its effects are milder. The kytril dehydrated me too much. Unfortunately, the Ativan is somewhat addictive, but I found I was able to stop it without too much difficulty. There are many other anti-nausea medications, so be sure your wife asks for an alternative, if she finds the side effects of any one of them too unpleasant. Whichever one she chooses, be sure she drinks plenty of water. Hydration is critical during chemo. By the bye, my latest scan showed no changes, so I continue to be in remission. I hope your wife will be able to say the same three and a half yearsfrom now. - Brian Brian p Wed, 21 Mar 2007 00:00:00 GMT Hi everyone,This is the first time i've reached out for information, but i figured i would give it a try.  On April 13 (Friday the 13th), my father was diagnosed with a Glioblastoma Multiforme in his left temporal lobe and partly in his thalamus. He is 50 years old.  It is an inch and a half in diameter and the doctor stated that becuase it is so deep in his brain, they would cause more damage trying to remove the tumor than leaving it in there.  He is going to start radiation and chemo in the next week and  half or so.  He will be taking the pill form of chemo. He had no visible symptoms - he would slur a word every once in awhile and forget how to do things.  In the three weeks since he approached his doctor, his speech has gotten worse and he has weakness in his right side.I guess what i'm looking for is support, information on how your families made it through this.  I know we have to stay positive and keep hoping for the best.  It seems that everyone on this board has had a craniotomy, which is impossible for my father.  I would like to speak to someone who who could not have surgery and what they went through.  Even some coping mechanisms would be great.   My mother, his caregiver, has been great with him.  When she is not with him though, she's in shambles.  Understandably.  She has not been on her own her entire life and has been completely dependent on my father for the almost 30 years they have been married.  She's having a very hard time with this, and i don't know what kind of support to give her.  I can not help her, as i am 2 states away and we have never gotten along.  I know i should stop being selfish and get along with her, but it takes two to tango.  I am worried about her as a caregiver for her health and sanity.  She has high blood pressure, is a worrier and flips out about the smallest things even in times of low stress.  What kind of advice can i give her, or provide for her in this very difficult situation?  My father is n the care of the Chief Neurosurgeon at Dartmough Medical Center, Dr. Roberts and his oncologist is Dr. FAdul - a world renowned neurooncologist. I'm just looking for hope at this point.  Some sort of positive note.  He has 2 daughters and 2 beautiful grandaughters and was finally happy and peaceful with his life.  Please, please help.  I am desperate at this point.you can email me at --- Message edited by CancerCompass staff: for personal protection, email address removed.  Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----  if you would like. Thanks, Megan Meglr11983 Mon, 16 Apr 2007 00:00:00 GMT  On 8/31/2006 Gennie wrote:My husband was diagnosed almost 4 years ago with this dreadful disease. He has been clear for 3 years until the recurrence last 11/05. He is now taking Avastin which is not yet FDA approved. We will know in October if this is working for him. For those who want to have Avastin for Glioblastoma, ask your oncologist to enroll in SPOC program where they will cover expense if the insurance rejects it.Hello,Our worlds have turned upside down in the last 3 weeks. My beautiful mum has a glioblastoma, grade 4. Please, please tell me what treatments your husband has had? I cannot lose my mum. When you say he was clear for 3 years, did they actually 'cure' the disease or was he still having treatments.  What is Avastin? We have been told nothing by the hospital about other treatments than radiotherapy. Does anyone have any alternative therapies to suggest as well? Please help... I am desperate. Lisey07 Wed, 18 Apr 2007 00:00:00 GMT Megan, I am going through the exact same situation as you.  It is helpful to know someone else is out there with similar circumstances.  I have looked and looked all over the internet to try and find survivors of Glioblastoma Stage 4 but have yet to find one. My dad was diagnosed with a brain tumor the day before Easter of this year.  We found out two weeks ago that it is inoperable.  Needless to say, we were devastated.  He is going to be taking chemo drugs and radiation next week. It would be nice to keep each other informed of how our situations work out.  I wish there was more information out there about people surviving without surgery but it is few and far between. Take care, Dana  Dreamgrl1205 Thu, 26 Apr 2007 00:00:00 GMT Hi there, My mum has just been diagnosed with GBM4 only about three weeks ago. She presented with poor vision to the eye specialist, who then ran some tests, which showed that there may be a blockage some where in the brain. She was then sent to get a CT scan and this showed 2 tumors, one in her frontal lobe, and one on the occipital lobe.She was immediately reffered to a neurosurgeon (Dr Michael Biggs - Sydney NSP) who addmitted her into hospital and she had 2 surgeries, to remove both tumors. She is back home today, and i must say is doing really well, her word finding is a little off, and her vision not the best, but she has had no paralysis, or seizures, and is in good spirits. Mum has started her Temador 120mg and Radio therapy, and so far no bad side effects... just really sleepy at times. There are survivors out there, and i keep this in my mind all the time... i belive she will beat this. If there is any one out there in OZ, or wherever who would like to talk about this situation, and is new to the whole GBM4 thing, please i would love to hear from you. Love to allGilda Gilda1981 Wed, 23 May 2007 00:00:00 GMT Hello Dana, It would be good if I could contact you some other way but I hope you get this.  My mum is doing OK at the moment, we had a bad episode where her brain swelled and she had too much fluid on her brain, it was very frightening but after a hospital stay it all seems to be under control again. I do believe there are survivors out there, and I know my mum will be one of them! So you must fight for your dad too. It's so hard but we have very little help from the hospital so I am looking in to alternative therapies which offer so much more light in this abyss.  My mum is takig glyconutrients and I am making sure she has lots of good foods to keep her vitamin intake up and make sure her immune system is doing as well as possible.  I do hope your dad is doing ok?  We are also going to a Brandon Bays weekend, don't know if you've heard of her but she cured herself of a basketball sized stomach tumor with no western therapies - and as they say 'anything you can do we can do better'.  I am absolutely sick of all the negativity of the doctors, all they ever do is quote dreadful statistics at my mum - SHE IS NOT A STATISTIC!!!! I would love to know how you are doing, Best wishes too you all,Lisa x Lisey07 Fri, 15 Jun 2007 00:00:00 GMT hope all is well my girlfriend was just diagnosed with stage 4 also she is 35 two children 8 months and 2yrs...i really do not know much about this can you give me soe insite..susanvernacchio@yahoo.com susie3 Wed, 25 Jul 2007 00:00:00 GMT Hi, My sister was diagnosed with Glioblastoma Multiforme Stage IV in May 2006.  She underwent surgery, chemotherapy and radiation treaments n addition to steroid therapy.  Unfortunately, her husband did not tell us the grim news or the type of brain cancer she had.  Her family, including me, were all under the impression that she would be back to herself within a year and she was going to be A OK.  Well, her husband dropped dead of a heart attack in June 07.  One week later is when we were told the truth about her condition.  Right now, the doctors say she is clear of cancer, however; they have told us that it will return and when it does, it will return with a vengence.  They basically said there is no hope for her and told us to go and see her now as they do not believe she will be here at Christmastime.  I am going to see her this weekend. She lives in the South.  I'm frightened to see her and yet I am also anxious to see her.  I feel so overwhelmed by all of this.  How do you get through these array of emotions? On 6/15/2007 Lisey07 wrote:Hello Dana, It would be good if I could contact you some other way but I hope you get this.  My mum is doing OK at the moment, we had a bad episode where her brain swelled and she had too much fluid on her brain, it was very frightening but after a hospital stay it all seems to be under control again. I do believe there are survivors out there, and I know my mum will be one of them! So you must fight for your dad too. It's so hard but we have very little help from the hospital so I am looking in to alternative therapies which offer so much more light in this abyss.  My mum is takig glyconutrients and I am making sure she has lots of good foods to keep her vitamin intake up and make sure her immune system is doing as well as possible.  I do hope your dad is doing ok?  We are also going to a Brandon Bays weekend, don't know if you've heard of her but she cured herself of a basketball sized stomach tumor with no western therapies - and as they say 'anything you can do we can do better'.  I am absolutely sick of all the negativity of the doctors, all they ever do is quote dreadful statistics at my mum - SHE IS NOT A STATISTIC!!!! I would love to know how you are doing, Best wishes too you all,Lisa x  Amy Lynne Mon, 27 Aug 2007 00:00:00 GMT  On 8/27/2007 Amy Lynne wrote:Hi, My sister was diagnosed with Glioblastoma Multiforme Stage IV in May 2006.  She underwent surgery, chemotherapy and radiation treaments n addition to steroid therapy.  Unfortunately, her husband did not tell us the grim news or the type of brain cancer she had.  Her family, including me, were all under the impression that she would be back to herself within a year and she was going to be A OK.  Well, her husband dropped dead of a heart attack in June 07.  One week later is when we were told the truth about her condition.  Right now, the doctors say she is clear of cancer, however; they have told us that it will return and when it does, it will return with a vengence.  They basically said there is no hope for her and told us to go and see her now as they do not believe she will be here at Christmastime.  I am going to see her this weekend. She lives in the South.  I'm frightened to see her and yet I am also anxious to see her.  I feel so overwhelmed by all of this.  How do you get through these array of emotions?My husband was diagnosed with Glioblastoma IV 5/3/06.  He had a surgery that removed 80%, gave him 6 months and that was only with the oral chemo & radiation.  We heard about clinical trials at the Brain tumor clinic at Duke University in Durham, NC.  Dr. Alan Friedman was able to remove 100% "of what he saw" on 6/8/07, as these tumors have fingers that infiltrate the brain.  He was tested for 2 clinical trials, but did not qualify.  So we came back home and he had 33 radiation treatments & 42 straight days of oral Temodar.  After this around end of Sept 2006 we went back to Duke and they started him on CPT11, which is a clinical drug + IV avastin. Nothing they did worked.  He started having Grand Mal seizures on Tues after Thanksgiving.  He had 12 seizures within 4 days, and all they did was add another anti seizure med to his Dilantin.  They never even seemed concerned enough to put him in the hospital.  Everyone else I have spoken with has been hospitalized after only a couple seizures.  But he went from being bed bound, to wheelchair, to walker, to walking on his own, then being my dance partner again. (We were country dance instructors).  He sprang back so well, and did great.  But then on Valentine's Day 2007 he got up as my sweet Bill and went to bed a Bill I hardly knew.  By the time he passed away on 3/29/07 he had 7 tumors.  He was only 57 and we had only been married for 8 1/2 wonderful years.  He had his last treatment on 3/8/07 and was due for another treatment on 3/22/07 and I stopped them.  Duke would have continued to keep giving this Avastin until I said stop, when they knew he was dying.  He died 7 days after the last appt that he was scheduled but I cancelled.  Unfortunately I do not know anyone that has lived longer than 18 months.  3 people have died that I know (actually met in our area during this horrible ordeal).  2 of them horribly.  Fortunately, my Bill was put into a hospital bed & catherized 36 hrs before he passed.  He just went to sleep and never work up, so he did not suffer.  But I tell you this man had the faith to move mountains.  His personal testimony and the way he would witness to others, brought more peace to those.  So many came to cheer him and they left in tears because he brightened their day.  I know he is in heaven and I am quite envious as I know he has seen the face of our Lord.  I live everyday to the fullest as the best Christian I can, as I know this way I will someday see him again.  He was not only my spouse, but truly my best friend.  And to go from having him to the next day without him has been devastating to me.  I had never heard of this disease and I am quite astonished at how many are suffering thru this.  God bless all of you and your loved ones who are going thru this.  I pray for a cure for all of you.Debi in Charlote, NC Bills1gal Thu, 30 Aug 2007 00:00:00 GMT Deb, I am so sorry for your loss.  Losing your best friend has to be very difficult.  I hope time is helping and the fact that you know he is no longer in pain and he is now with our creator is bringing you comfort. My sister was also diagnosed in May 2006.  They could only remove about 80% of her tumor as well. She has developed two more benign tumors since then.  The doctors say, right now she is in remission from the cancer (at least that is what I'm being told by other family members). The doctors say that when the cancer returns, it will return with a vengence.  I have not seen her since her diagnosis.  I know she was put through chemo and radiation and steroid therapy.  I will be going to see her this weekend (Labor Day). Her birthday is September 3rd.  She will also be 57.  I have been told so many conflicting stories and when my sister's husband dropped dead the end of June 07 from his heart attack is the first I heard she was terminal.  I don't know what to expect when I see her.  I'm bringing our mother to see her.  I am almost positive the family in Georgia is sugar coating this situation to get our elderly mother there.  Arlene, my sister with the brain cancer, cries for her mother every day.  So, I am making sure I get mother there.  I have been told so many conflicting things so I am trying to sort out the sugar coating from the actual hard cold truth.  That's why I am on this message board tyring to talk with others who have already gone through this.  One of the things I have been told is that one doctor told a family member she would definately not be here at Christmastime.  Some things stick with me and that was one of them. Arlene is at 15 months from diagnosis at this time.Thank you for responding.  I appreciate it very much.  And, again, I am sorry for your loss.Amy Amy Lynne Thu, 30 Aug 2007 00:00:00 GMT Good morning Amy - (and all)I'm the primary caregiver for my 76 yr old mother, who was diagnosed in June of this year.  We had a normal, happy Memorial Day vacation, but by the following week she complained that she could not read... see the letters, but could not make sence of them.  This was her only complaint.  A week later we had the MRI (tumor in left Occiptial Lobe), and 3 days later she had the resection, and we received the devistating news... 3-4 mo without treatment, 8-9 with.Her recovery from surgery went well, and she is now begining her 6th and final week radiation + Temador.   There has been nausea with this, but Zofran is controlling it well.  While she started out fairly strong, there was a marked decrease in her stamina and capability last week.  Her Onchologist ordered a new CT scan yesterday.  Still waiting on the results (simple brain swelling, or newly advancing tumor).Hardest part?  Trying to stay positive, and not just simply slide down the depression slope.  On the surface, we tell ourselves to "make the most of everyday we have".  Underneath however, as I'm sure all of you know, it's a real struggle.  Just looking for some words of advice, and others in a similar situation to talk to.  Thanks-  Dennis Dennis60 Sat, 01 Sep 2007 00:00:00 GMT Hi Denise, Deb and Everyone,Well, I'm getting ready to drive from Las Vegas to Phoenix in a couple of hours.  I'm getting my 78 year old mother and she and I are flying out to Atlanta tomorrow to see my sister.  Right now, Arlene is what they call in a "lull" she is past the surgery, chemo, radiation, etc.. and seems to be doing fairly well at the moment.  I thank God for this "lull."  I was so frightened she would pass away while we were there as she has been crying every single day for her mother.  That's why I'm getting my mother there to see her.  It's hard for our mother as our mom already had one child die in her arms, my younger brother, Michael, passed away from Muscular Dystrophy and it almost killed mom.  This is something she hasn't wanted to face.  So, going with me is the only way we could get her there to see her daughter.Arlene is at 15 months since diagnosis.  Reading Deb's reply to me made me truly understand where my sister is, in this stage of her cancer.  Right now in remission but when it hits, it will hit hard, fast and she will be gone.  That is what the doctors say as well.  I'm scared, I admit it, the time I saw my sister, she was vibrant, beautiful, successful and healthy.  Not the case now.  I've been told to be prepared to see someone else.  I will let you all know how things went when I get back next weekend.Dennis, I'm sorry for your mom.  She has a lot to go through yet, but it sounds like she is doing pretty well so far, especially for her age.  This is so difficult and I find myself asking why?  How could this happen?Amy Amy Lynne Sat, 01 Sep 2007 00:00:00 GMT Hi Deb, Dennis and everyone, I just got back from seeing my sister.  She was diagnosed in May 2006 with Glioblastoma Multiforme Stage IV.  I told you guys I would get back to you after I saw her.  Well, it was actually worse than I thought it would be in some ways and better in other ways.  Its been 15 months since her diagnosis and well over a year since her surgery and chemotherapy.  She did not come out of it unscathed.  She shuffles when she walks.  She uses a cane.  Her speech is impaired.  Her face looks similar to someone who has had a stroke.  Her eyes are not the same and one corner of her mouth is droopy.  She has no short term memory.  Her long term memory is pretty good.  All she wants to eat is cereal.  She fell out of the shower when my mother was with her alone.  She fell on the floor and hit her head.  She said she slipped on the rug, but I actually think she may have had a mini seizure.  I had to bathe her and she started crying because she could not sit down in the tub.  It was too difficult for her to get down in there so we sat her on the side of the tub and I washed her.  All the while she was crying.  I told her we would get her a chair for the tub and a long shower head so she could spray herself.  I had to hold her on the side of the tub because she started to faint.  She fainted in my arms twice.  She looked at me and started crying telling me I needed to move there because she was going to be gone.  She was depressed alot.  Her husband dropped dead of a heart attack in June and she is grieving his loss so I had to talk to her about death and dealing with her loss.  That was hard - believe me.  I had to tell my mother the truth about her condition because she asked me.  She said, "Arlene isn't going to get better is she?"  So, I told mother I would not sugarcoat this and I told her about this support group and what I have learned about this disease and none of it is positive.  In fact, it's grimm.  Mom took it well but had nightmares all night long.  Mother is too old and too frail to take care of my sister.  My older brother is there as her caregiver since her husband died and it may even be too much for him.  I am encouraging him to look into hospice care.  Sister won't go into a care center.  She refuses and it scared her so no one is going to force her to go into one.  I'm concerned about what is going to come next.  She doesn't seem to be doing all that well to me at this point.  How do you know when its time to bring in hospice?Thanks.Amy  Amy Lynne Mon, 10 Sep 2007 00:00:00 GMT Hello Everyone .. My brother in law had his 3rd surgery because of hte Glio Aug. 17, he is recovering in a nursing home.2005 he was given a year... Today, almost 2 years later, although he is not in teh best shape, he is with us.  We love him very much and we pray everyday for a better tomorrow for him and ALL those suffering from this dreadful illness. God Bless YOU each and every day and give you all the strength and faith to believe that everyday someone out there is finding a better way for our loveones to deal with this non pejudice decease, and that every second of everyday brings us closer to a cure!  You are all in my prayers.  God Bless!!!Mari toughpr Tue, 11 Sep 2007 00:00:00 GMT I just got diagnosed last week with a glioblastoma IV I'm 26 and I'm wondering how treatment is going for you friend. What type of treatment is she on?  They told me mine is inoperable and they want to do termodar and radiation.  I would like to get a second a opionion...does anyone have any information?  Or heard any good information on sergeons? Any information would be great....I'm very overhelmed trying to find the best decision for myself. Thank you,Shannon srs619 Sun, 07 Oct 2007 00:00:00 GMT  On 4/16/2007 Meglr11983 wrote:Hi everyone,This is the first time i've reached out for information, but i figured i would give it a try.  On April 13 (Friday the 13th), my father was diagnosed with a Glioblastoma Multiforme in his left temporal lobe and partly in his thalamus. He is 50 years old.  It is an inch and a half in diameter and the doctor stated that becuase it is so deep in his brain, they would cause more damage trying to remove the tumor than leaving it in there.  He is going to start radiation and chemo in the next week and  half or so.  He will be taking the pill form of chemo. He had no visible symptoms - he would slur a word every once in awhile and forget how to do things.  In the three weeks since he approached his doctor, his speech has gotten worse and he has weakness in his right side.I guess what i'm looking for is support, information on how your families made it through this.  I know we have to stay positive and keep hoping for the best.  It seems that everyone on this board has had a craniotomy, which is impossible for my father.  I would like to speak to someone who who could not have surgery and what they went through.  Even some coping mechanisms would be great.   My mother, his caregiver, has been great with him.  When she is not with him though, she's in shambles.  Understandably.  She has not been on her own her entire life and has been completely dependent on my father for the almost 30 years they have been married.  She's having a very hard time with this, and i don't know what kind of support to give her.  I can not help her, as i am 2 states away and we have never gotten along.  I know i should stop being selfish and get along with her, but it takes two to tango.  I am worried about her as a caregiver for her health and sanity.  She has high blood pressure, is a worrier and flips out about the smallest things even in times of low stress.  What kind of advice can i give her, or provide for her in this very difficult situation?  My father is n the care of the Chief Neurosurgeon at Dartmough Medical Center, Dr. Roberts and his oncologist is Dr. FAdul - a world renowned neurooncologist. I'm just looking for hope at this point.  Some sort of positive note.  He has 2 daughters and 2 beautiful grandaughters and was finally happy and peaceful with his life.  Please, please help.  I am desperate at this point.you can email me at --- Message edited by CancerCompass staff: for personal protection, email address removed.  Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ----  if you would like. Thanks, Megan hey....new here...english isnt the best but i will try anyway......(from israel).well'my father (54 years old)has the same thing megan's father has,on november 2006 it was discoverd;also cant be surgend-it is to deep,my dady lost his ability to speek,then his memory,then apilepsia attack(when muslce is beeing shaking with no ability to stop)i think 8 or 9 times.reading ability and his ability to see goten worse,the last days he cant understand what we talking-or very little words'cant even seat(the tumer sit in the left side of brain-so all the right side of the body dosent functions)-avcorse bathing its imposible-beacuse he cant even stand,all we do all day is moving him to eat and bath and bad and bathroom(if he rember to single us he needs to-not always)to watch this is very hard-the doctors told us from the beging-he has between 2 monthes to one year,11 monthse after it-i am saying(with tears)thet my dad better of in heaven...to see him suffer is .......teribble,he probbly doesnt have many days to stay with us.....what a monster diseaseif someone wants to write me-i would be happy,alittle advice..........never(!) stop fighting-in afew years we shouldbeat this thing-for next jeneration   levigor Tue, 09 Oct 2007 00:00:00 GMT Over a year ago I posted a note about my husband, 59 yrs old, approaching his 4th anniversary with a left temporal GBM.  He is still alive, but I want to warn about a  common treatment that nearly did him in this summer. You can die from NON-TUMOR and treatment related problems.May 8th he had right side facial weakness and CT showed a blood clot near the tumor cavity but no tumor by MRI, or PET scan. Rather than surgically remove the clot, they treated with high dose dexamethasone to reduce cerebral edema. It initially worked well. Within 72 hours his facial movement was nearly symmetrical, he could drink, swallow, walk,etc. and I drove him home from the hospital.  His speech was the main impairment. At about 12 days from the  start of steroids (24 mg of Decadron/day), my husband mysteriously started to become weaker, then so much so, I was calling his neurologist several times a week. He did not think it was a steroid problem, but said I could decrease his dose a day ahead of scheduled two week decrease. On May 28, I took him to the emergency room, got  another CT, thinking he had another bleed.  All clear, so they doubled his seizure meds trileptal and depakote. This made him unresponsive. I went back to the old dose after calling the neuro-oncologist again. I took him to his internist, the neurosurgeon who prescribed the steroids ( and was his attending physician) and his neuro radiologist ( whose opinion I value) over the next three weeks.The advice: Internist- his sodium is a bit low, limit water and drink gatorade. Repeat the sodium level in a week. I don't know why he looks so weak.Neurosurgeon- I am sure his tumor is back, perhaps hiding behind the nicely resolving clot.  We can consider gamma knife later sometime. He is clearly not doing well, I could do a VP shunt since his ventricles look a little big on the new scan." You can try to reduce the steroids if you want. If he can tolerate it. My nurse will give you a prescription. I'll see him again in 3 months for an MRI".The neuroloncologist- The  new MRI shows no tumor, you look terrible, but this is NOT a steroid problem. You could try a ventriculoperitoneal (VP shunt, if the neurosurgeon suggests it). Keep up the anticonvulsants.Neuroradiologist- I'm sorry you are getting so much conflicting advice. Just do aggressive physical therapy and wait a month. Don't do the VP shunt. I don't think the ventricles have changed.Long story made short. I called the ambulance a week later when he could not stand up at all. He was admitted to the hospital's ICU with pneumonia, and atrial flutter and was left on steroids for another 6 weeks.  After 51 days in the hospital ( and placement of a PEG for tube feeding, cardioversion, insulin for steroid induced diabetes, etc), he was transferred to an acute rehab center with the diagnosis of STEROID INDUCED MYOPATHY.  It took a lot of fighting to get them to admit the diagnosis. They want so badly to prove the odds that his tumor recurred.  After 5 weeks , he can now hold his head up, sit without support, and use both hands to  eat a regular diet. I am hoping for a full recovery to our pre-clot state. We are at 4 years and 8 months since his surgery. He was and is living on prayer. This is a potentially deadly medicine used on a survivor.  We are not out of the woods yet.  We also stopped anticonvulsants since he had hit rock bottom in the quality of life category. When he was accidentally taken off his Depakote in the hospital (yes, by accident), he became a new man, totally alert  and communicative. I am interested in other late effects, complications, signs of recurrence, etc. especially in long term survivors. Thanks Ohio55 Tue, 09 Oct 2007 00:00:00 GMT Hello to all, I am new to this website, but all of your stories give me hope that someone can be strong and survive this "Monster Disease" and that the family can be ok and by God's grace live through the ups and downs.My father was diagnosed on September 17th of this year with a stage IV Glioblastoma.  He was presenting with headaches, visual problems, dangerous and erratic driving practices and dyslexic tendancies.  He got progressively worse, until my mom took him to the ER.On September 24th, he had a tumor resection that did not get all of it, but did get the "core".  I saw the tumor before surgery, and it was butterfly shaped.   The doctor at Emory University Hospital told us that there were pieces left in the brain and that he would require chemo and radiation together.  The chemo is oral. He has to take 3 pills for 60 days. He is 70 years old and in excellent health to the point that his oncologist requested that he be allowed to take Temodar (sp?) in conjunction with his radiation.   His tumor was to quote the doctor "huge".  He is recovering very well from his surgery and awaits the beginning of his treatments.My friend in Savannah told me that she only knew of 2 people that had this to live less than one year.  One was 35 and one was probably in his 40's.  I would like to know if any of you have heard of any long term survivors or anybody who has "beaten" this horror, or has gone into long term remission.  It is so good to know that there are others who are out there too, and that I am not alone.  But my wish and my prayer for all of us, patients and loved ones alike, is that our Lord will take this horror out of this world and let us live cancer free.  Prayers and Hope to you all, TARA C TARAC Sat, 27 Oct 2007 00:00:00 GMT Hi,Where was his tumor located? My dad;s is inoperable, and we don't really have anywhere to go for a second opinon, who is he seeing at UCLA- anyone you would recommend? Thanks Jordyn Hope4Hoppy Wed, 07 Nov 2007 00:00:00 GMT Hi,My dad was just diagnosised in July of 2007, his is inoperable as well. He had whole head radiation which he tolerated well. He is just starting chemo (he was on it before, but his blood count dropped-so he was intially taken off). The good news is that after the radiation his tumours have not grown. He is staying very positive,and has made some life changes *diet/excerise. If you have any questions, I would be happy to answer them if I can,Best of luck-Keep your spirits up!Jordyn Hope4Hoppy Wed, 07 Nov 2007 00:00:00 GMT Hello,My father was diagnosed with GBM4 brain tumour in October 2006.  He has had surgery, first to remove the pressure and then to remove the tumour.He then started radiotherapy in jan/feb 07.  I got married in july 07 and my sister was pregnant and her baby due in october 07.  Unfortunately my father was told he needed more surgery to remove the tumour again in end of september 07 and had that done.   My sisters baby was born a couple of day later making the situation a little more pleasant and taking our minds off it all.  Very good timing!It's now November 2007 and my father is having to go back for more tests whilst continuing with the on-going chemotherapy treatment which he is having.Our doctrs have no hope and are saying that they can only prolong his lifem however we are born again christians and believe that God is on our side.I believe in divine healing and wanted to share this with you.  You said at the end of your last message 'praise God'  and I just wanted to agree. xJennax  Jenna B Sat, 17 Nov 2007 00:00:00 GMT Oh my goodness, you are so right, prayer is the only way!!You should of course try to help your diet - dr budwig is very recomended wit gbm 4 tumours.God wil heal thought, miracles HAVE happened in the past.I wish you all well and feel for you all,Love Jenna xx Jenna B Sat, 17 Nov 2007 00:00:00 GMT Please if you hear anything share with me. My sister 21 y was diagnosted with this cancer 4 months ago and she's not doing well.ThanksEduardo Sergioeduardo Fri, 30 Nov 2007 00:00:00 GMT  On 11/30/2007 Sergioeduardo wrote:Please if you hear anything share with me. My sister 21 y was diagnosted with this cancer 4 months ago and she's not doing well.ThanksEduardoEduardo, I'm so sorry to hear that yoru sister has this awful illness.  God Bless her and give you all strength and courage.  The Journey with this illness is not an easy one, especailly for those of you who will be taking care of your sister and watching her go through the stages of this illness.   I will pray for your family.  God Bless you and  your sister and give you strength and courage, May the Virgin Mary give your mother courage and help her through this difficult time. If you would like to read more about this illness you can go to the hospice website....  www.brainhospice.com   read through it, but please, have faith and strength.  Never loose hope and always keep faith!!!Mari toughpr Fri, 30 Nov 2007 00:00:00 GMT Hi, I do not know what to say and I presume I can not write all the story we had since 10th November.. Shortly 9th November after work I had a splendid time with my husband had a night out for dinner etc.We had many plans for the w/end and Saturday 7:00 am he had  an epileptic shock (first time in his life ) and we found out there are some tumors in his brain.. And he had a severe bleeding in his brain 27th November , urgently had an brain surgery the other day another bleeding ..By that time we had the biopsy result that he had GBM .. He had the second brain surgery , bleeding is stopped but he's sleeping since 27th 15:00 pm (although we had a phone conversation at 13:30pm and he was perfectly alright! ). Until 2nd of December he was responding  very much so to the pain stimulants..but it was quite lessen since sunday and He has got tempereture too.. It is just like a joke .. Very hard to believe in all these things happening to him. He was such a person scaring from the cancer a lot . He had got very (even I was finding too much & exagrated ) healthy living. 0 smoking , 0 drinking, olive oil only, 0 fried food, fast food etc etc.. And here it is he has got GBM ..must be a joke . I do not know what to think , I do not know how to help him . I am talking with him , give him some massage but really difficult to see him like that.  7th December our wedding anniversary. You know everytime we say that there is no past , no future we have got only the very moment in our hand .. I do understand it deeply now. We do not know what will be happen after a second later. I do not lost my hope . I know everything , good or bad , is for us in this world. I know everything has got a reason . I respect God , I respect nature but even though it is  so difficult to see him over there .. I hope I hope he does not feeling any pain.  Wish you all love and power,Cigdem cigdem Tue, 04 Dec 2007 00:00:00 GMT God Bless you .  I just lost my brother after a 2 1/2 year batle.  He was diagnoised when he was 40.  This is the worst cancer ever.  He lost everything, step by step.  He walked into the hospital for his operation & came out with his left side paralyzed.  He fought so hard with physical therapy to get back to work & he did for about 9 months.  That is all he ever wanted, just his life back. We need to all stick together & fight this horrible cancer.  Take care & God Bless you all.  I really think the end is harder on the family than the patient.  alexis alexisc Sun, 09 Dec 2007 00:00:00 GMT I'm so sorry for your brother. Wish you and all the family the  much strength. Since the second operation 29th November 11 days already passed . He's still sleeping . I wonder if he feels me or hear me. Everyday I go to him giving him a massage for his legs and arms . talking , sometimes reading.. Only one thing is changing on him.. his pulse. It's increasing. Normally 57- 70 but when I'm talking it's 90 - 100.. On 7th November was our wedding anniversary His pulse first time increased to 123.. I do not know if it's a coincidence or not. All the doctors says the same things and they do not have any hope BUT we still couldn't lose our hope I presume we are all waiting for a miracle.  Much love, cigdem Mon, 10 Dec 2007 00:00:00 GMT  On 9/10/2007 Amy Lynne wrote:Hi Deb, Dennis and everyone, I just got back from seeing my sister.  She was diagnosed in May 2006 with Glioblastoma Multiforme Stage IV.  I told you guys I would get back to you after I saw her.  Well, it was actually worse than I thought it would be in some ways and better in other ways.  Its been 15 months since her diagnosis and well over a year since her surgery and chemotherapy.  She did not come out of it unscathed.  She shuffles when she walks.  She uses a cane.  Her speech is impaired.  Her face looks similar to someone who has had a stroke.  Her eyes are not the same and one corner of her mouth is droopy.  She has no short term memory.  Her long term memory is pretty good.  All she wants to eat is cereal.  She fell out of the shower when my mother was with her alone.  She fell on the floor and hit her head.  She said she slipped on the rug, but I actually think she may have had a mini seizure.  I had to bathe her and she started crying because she could not sit down in the tub.  It was too difficult for her to get down in there so we sat her on the side of the tub and I washed her.  All the while she was crying.  I told her we would get her a chair for the tub and a long shower head so she could spray herself.  I had to hold her on the side of the tub because she started to faint.  She fainted in my arms twice.  She looked at me and started crying telling me I needed to move there because she was going to be gone.  She was depressed alot.  Her husband dropped dead of a heart attack in June and she is grieving his loss so I had to talk to her about death and dealing with her loss.  That was hard - believe me.  I had to tell my mother the truth about her condition because she asked me.  She said, "Arlene isn't going to get better is she?"  So, I told mother I would not sugarcoat this and I told her about this support group and what I have learned about this disease and none of it is positive.  In fact, it's grimm.  Mom took it well but had nightmares all night long.  Mother is too old and too frail to take care of my sister.  My older brother is there as her caregiver since her husband died and it may even be too much for him.  I am encouraging him to look into hospice care.  Sister won't go into a care center.  She refuses and it scared her so no one is going to force her to go into one.  I'm concerned about what is going to come next.  She doesn't seem to be doing all that well to me at this point.  How do you know when its time to bring in hospice?Thanks.Amy Hi Amy, I have been following your emails and when I saw this one, I wanted to reply.  It is now December so I don't know if your sister has survived up to this point.  If she has and if you have not called in hospice, do it immediately.  Sooner is better than later.  I found that out with my mom.  she had a terrbile final 3 weeks of her life and I wish we had called in Hospice months belfore that.  She died just over a year ago.My husband was diagnosed with GlioBF 1 week before our fist wedding anniversary in October this year.  He had a huge tumor, right frontal lobe, stage 4.  He had surgery and is finishing up radiation and oral chemo in the next 2 weeks.After a time of feeling really drained and eathing nothing but ice cream, jello and watermelon for several weeks, his energy started to return about 2/3 of the way through his treatments.  He is feeling better and stronger and eating normally again. My old boss has survived 2 years now, same tumor, same place, same treatments - but he started at stage 3.  He is fine, taking chemo 1 week per month and plays golf a lot.  He does not work.Please let me know how your sister is doing or if she has passed on.  My love and best thoughts are drifting toward you.Rhonda BoRhonda Mon, 24 Dec 2007 00:00:00 GMT My husband has GBM IV.  I have noticed several references to brain injury prior to GBM diagnosis.  Our oncologist insists that brain injury can in no way cause the start of GBM.  I truely believe a head injury one year ago caused the cancer to start.  Any thoughts or info out there?  Please? dovecanyon Fri, 15 Feb 2008 00:00:00 GMT I think you are right.My mom had a car accident in 2001.She had brain injury and terrible headaches and nausea for 5 years.With medications the pain got better.Last year she was diagnosed with GBM grade 4.So I strongly believe that the brain injury IS the cause of that, no matter what the doctors say. audry Wed, 27 Feb 2008 00:00:00 GMT My father inlaw was diagnosed with this cancer back in July of 2006.  He had the tumor removed and they were fairly sure they got it all.  He went through the chemo and radation etc.  He's had a slight personality change.  We aren't sure if its due to the the tumor itself, the surgery or just dealing with the possibility of dying.  It is now March of 2008 and every MRI has came back negative.  He's had no significant after effects.  He's tired more easy.  Thats the main thing but he's had no edema, headaches, dizziness etc.  Main thing is he's a bit harder to live with than before diagnosis.  He was given 3-10 months to live and it will be 2 years in July.  He still goes on trips and does most everything he did before.  He goes for MRI's every 3 months and have been clear since surgery.  He had stage IV.  Is there anyone else out there that has a friend or relative that has remained tumor free and pretty symptom free? nameless Fri, 21 Mar 2008 00:00:00 GMT Someone rang for a GBM survivor??;)  I, like your father in law, am symptom free and will be a 4yr survivor this november.  I go in every 4 mos for MRIs, and thats it...now!  3 yrs ago I was in and out of the hospital with infections and treatments!  All that is a memory now.  A rare breed, us treatment-free GBMers, but we're out there.  Ben Williams is also a GBMer, 11 years now, a professor at a so-cal university.  He wrote a book as well about treating GBMs.  As far as myself, I am fully active.  I am a happy housewife also spearheading a brain cancer foundation.  I was 22 when diagnosed, fresh out of college, newlywed, etc.  My life has altered drastically, yet as always for the better.   I am constantly seeking other brain cancer (esp GBM) survivors to discuss quality of life issues concerning the implications in surviving brain cancer. I volunteer with several groups in the cancer community as well.Survivor info on GBMers is such a rarity esp if u are no longer in treatment!  Statistics just assume you're dead already, and not many details are given as to how to handle future expectancies.  I dont have the same brain I once had, though no one else knows, family included.  I never required physical therapy, though my gait (how I walk) makes my right foot step a hair to the outside, and I dont run down stairs anymore!  Little alterations, yet truly, and as oppsed to other GBMers, insignificant changes.  Anyhow, hope this helped at all, and if would like to continue contact or have further questions, --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--  is my email!  Support and congrats to your father in law on slaying the beast! Cancerella Mon, 31 Mar 2008 00:00:00 GMT  On 3/31/2008 Cancerella wrote:Someone rang for a GBM survivor??;)  I, like your father in law, am symptom free and will be a 4yr survivor this november.  I go in every 4 mos for MRIs, and thats it...now!  3 yrs ago I was in and out of the hospital with infections and treatments!  All that is a memory now.  A rare breed, us treatment-free GBMers, but we're out there.  Ben Williams is also a GBMer, 11 years now, a professor at a so-cal university.  He wrote a book as well about treating GBMs.  As far as myself, I am fully active.  I am a happy housewife also spearheading a brain cancer foundation.  I was 22 when diagnosed, fresh out of college, newlywed, etc.  My life has altered drastically, yet as always for the better.   I am constantly seeking other brain cancer (esp GBM) survivors to discuss quality of life issues concerning the implications in surviving brain cancer. I volunteer with several groups in the cancer community as well.Survivor info on GBMers is such a rarity esp if u are no longer in treatment!  Statistics just assume you're dead already, and not many details are given as to how to handle future expectancies.  I dont have the same brain I once had, though no one else knows, family included.  I never required physical therapy, though my gait (how I walk) makes my right foot step a hair to the outside, and I dont run down stairs anymore!  Little alterations, yet truly, and as oppsed to other GBMers, insignificant changes.  Anyhow, hope this helped at all, and if would like to continue contact or have further questions, --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--  is my email!  Support and congrats to your father in law on slaying the beast!Hi,My mom (age 63) was just diagnosed in March with this horrible disease. I see all kinds of survivors under the age of 50, but is there anyone out there who survived long term with an initial diagnosis over the age of 50? My mom is a fighter, but this is the second fight of her life. In 1999 she have viral encephalitis that caused 2 grand mal seizures and she was in a coma.  They didn't think she would survive, but she did...and went back to teaching full time after 4 years of hard work to get there...she just retired in June of 07. She had no symptoms of this disease other than a seizure which they attributed to her carbitrol being low (she's taken this since the encephalitis). That didn't sit well with me as she hadn't had a seizure in 9 years...anyway...I am looking for a ray of hope in all of this. My mom has a phenominal attitude and plans to fight it. They were able to do a "clean" resection and she is starting the radiation and chemo on Monday April 7th. If anyone has any information about older people surviving I would appreciate it greatly. Thank you, Kellie kellieD Tue, 01 Apr 2008 00:00:00 GMT  On 3/31/2008 Cancerella wrote:Someone rang for a GBM survivor??;)  I, like your father in law, am symptom free and will be a 4yr survivor this november.  I go in every 4 mos for MRIs, and thats it...now!  3 yrs ago I was in and out of the hospital with infections and treatments!  All that is a memory now.  A rare breed, us treatment-free GBMers, but we're out there.  Ben Williams is also a GBMer, 11 years now, a professor at a so-cal university.  He wrote a book as well about treating GBMs.  As far as myself, I am fully active.  I am a happy housewife also spearheading a brain cancer foundation.  I was 22 when diagnosed, fresh out of college, newlywed, etc.  My life has altered drastically, yet as always for the better.   I am constantly seeking other brain cancer (esp GBM) survivors to discuss quality of life issues concerning the implications in surviving brain cancer. I volunteer with several groups in the cancer community as well.Survivor info on GBMers is such a rarity esp if u are no longer in treatment!  Statistics just assume you're dead already, and not many details are given as to how to handle future expectancies.  I dont have the same brain I once had, though no one else knows, family included.  I never required physical therapy, though my gait (how I walk) makes my right foot step a hair to the outside, and I dont run down stairs anymore!  Little alterations, yet truly, and as oppsed to other GBMers, insignificant changes.  Anyhow, hope this helped at all, and if would like to continue contact or have further questions, --Message edited by CancerCompass staff. For personal protection, email address removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--  is my email!  Support and congrats to your father in law on slaying the beast!I am so happy to read your message..  My friend has GBM reaching 2 years now and as we live so far apart I am scared that I might not have the chance to see her properly again.  But your message has given me hope.   It is possible despite what the statistics say.I hope all is well with you.  Take care. JayO75 Thu, 10 Apr 2008 00:00:00 GMT  On 10/27/2007 TARAC wrote:Hello to all, I am new to this website, but all of your stories give me hope that someone can be strong and survive this "Monster Disease" and that the family can be ok and by God's grace live through the ups and downs.My father was diagnosed on September 17th of this year with a stage IV Glioblastoma.  He was presenting with headaches, visual problems, dangerous and erratic driving practices and dyslexic tendancies.  He got progressively worse, until my mom took him to the ER.On September 24th, he had a tumor resection that did not get all of it, but did get the "core".  I saw the tumor before surgery, and it was butterfly shaped.   The doctor at Emory University Hospital told us that there were pieces left in the brain and that he would require chemo and radiation together.  The chemo is oral. He has to take 3 pills for 60 days. He is 70 years old and in excellent health to the point that his oncologist requested that he be allowed to take Temodar (sp?) in conjunction with his radiation.   His tumor was to quote the doctor "huge".  He is recovering very well from his surgery and awaits the beginning of his treatments.My friend in Savannah told me that she only knew of 2 people that had this to live less than one year.  One was 35 and one was probably in his 40's.  I would like to know if any of you have heard of any long term survivors or anybody who has "beaten" this horror, or has gone into long term remission.  It is so good to know that there are others who are out there too, and that I am not alone.  But my wish and my prayer for all of us, patients and loved ones alike, is that our Lord will take this horror out of this world and let us live cancer free.  Prayers and Hope to you all, TARA CI am writing for my husband. He had surgery May 1, 2006 with a glioblastoma multiforme level 4 on his ocipital lobe. It wasn't horribly large, about 1mm. They were able to remove the whole tumor. He went thru radiation and Temadar. All his checkups have been great, even his blood work. He had some problem with sinus infections when he took the chemo, but when he went on an antibiotic on the 2nd or 3rd day of chemo, he didn't get the infections. His vision is still not as yours or mine, but he can go outside and get around to do some things. coonhunter Sat, 12 Apr 2008 00:00:00 GMT Hi Gilda, How is your mum doing? Hope she's doing well.I have a friend and his father suffers from GBM IV. He just found out yesterday.  My own father survived Lymphoma cancer 5 years ago so I know how hard it is having your loved ones battling cancer... Therefor i feel really sad for my friend's father and would really try my best to help. My friend stayed in Sydney, so I was reading that your mum receives treatment by Dr. Michael Biggs.  Maybe I can start helping my friend by helping him find a good doctor in Sydney.  If you don't mind Gilda, may I know the address and contact number of Dr. Biggs or perhaps the hospital where he practices...Thank you very much Gilda for sharing.Yenny yenny Fri, 02 May 2008 00:00:00 GMT In response to a recent post and as a general point of optimism for the Board, I'd like to tell you about my mother.... 1.  Diagnosed in 1998 with a GBM (plum sized, left side behind the ear).  She had a seizure while playing cards.  At the time she was nearly 63 years old.  Relatively healthy otherwise.2.  Standard resection, radiation, chemo (BCNU - is that what it was called?).3.  Participated in a Phase 2 trial with Tamoxafin - stayed on it for about 2 years - much longer than most participants were able to stay on.4.  MRIs every 3 months, then every 4 months, then every 6 months, now every year.  No other treatments, although she still takes some sort of anti-seizure pill every day.5.  Three times has had malanomas removed (presumably unrelated).6.  Celebrated her 10th year survivorship last week.7.  Carries an incredibly positive attitude ("Believe" has always been her motto) and never has once complained of her misfortune.   Hope this helps all of you dealing with this terrible disease to have another example of long-term survivorship.  Believe!   BrianfromMichigan Sat, 17 May 2008 00:00:00 GMT hi my name is stacy and i am a stage 4 survivor of glioblastoma.  in  response to your web site.please feel free to contact me.                      thanks, stacy.     survivor stacyloveslester Sat, 17 May 2008 00:00:00 GMT hi, my name is stacy and i was diagnosed in 2001 with glioblastoma stage 4, i to was on decadron, steroids, they were awful, i gained between 90 an 100 lbs. my bones became brittle.        but with prayer im still here by the grace of god.still cancer free. may god bless you and your loved ones. write back if you would like to talk.                                                                                stacy stacyloveslester Mon, 19 May 2008 00:00:00 GMT  On 5/19/2008 stacyloveslester wrote:hi, my name is stacy and i was diagnosed in 2001 with glioblastoma stage 4, i to was on decadron, steroids, they were awful, i gained between 90 an 100 lbs. my bones became brittle.        but with prayer im still here by the grace of god.still cancer free. may god bless you and your loved ones. write back if you wo