CancerCompass message board discussion started by Joi A. on 7/22/2002 http://www.cancercompass.com/message-board/message/all,459,0.htm Tue, 07 Oct 2008 00:00:00 GMT Tue, 07 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My husband just had a astrocytoma tumor removed from his brain and will start radiation and chemo next week. They rate them from a 1 to a 4 with 4 being the worst. His was a 4. The oncologist has said that even with radiation and chemo his life expectancy is 12 to 20 months. I have checked the message boards and no one has mentioned this type of cancer yet, and I was hoping for some input for alternative ways to treat this disease. I would appreciate any help. Thanks. Joi A. Mon, 22 Jul 2002 00:00:00 GMT Hi I just saw your message on the board. I was wondering how your husband was coming along. My husband was diagnosed on 12-4-02 with Glioblastoma Multiforme - Stage 4 brain cancer - they also said his chances are about 1 year. He is taking radiation now but can't take chemo because he had a kidney transplant. They said his only other option was to put the "waffle beads" on his brain if the radiation helps some. That would give him another 6 months. Hope to hear from you. Karen Karen C. Wed, 25 Dec 2002 00:00:00 GMT Hi. My older sister had astrosytoma stage 4 11 years ago. I regret to say she had surgery and chemo but lived only 1 year. It came back so agressive that they could not do any more. I don't want to get you down because they have come so far along with treatments so you really don't know. I also was diagnosed with astrosytoma grade 3 just last June and mine is inoperable. I have gone through 7 weeks of radiation along with 7 weeks of chemo. I now have chemo once a week for 6 months. I just had a MRI last week and I am waiting for the results. I feel good and I feel like I am beating it. I just keep thinging positve and just keep fighting it. I hope you do well and god bless. Edward K. Mon, 06 Jan 2003 00:00:00 GMT I wish you the best with this type of tumor and the treatments you are going through. My husband Tom was recently diagnosed with astrocytoma grade 3. He is 38 years old. We are very scared but are trying to take a day at a time. He has had one round of chemo and they are possibly talking about radiation. He has more then one tumor so it isn't good at all. Again I wish you the best and I am sorry about your sister. Please keep in touch and let me know how you are doing. Take care of yourself and I will keep you in my prayers. Lorray (Tom's wife) Lorray S. Wed, 11 Jun 2003 00:00:00 GMT Hi again. This is Ed again and I am doing fine. They say my astrocytoma stage 3 is going away. I have a hole in my brain the size of a half dollar from chemo and radiation. I have been tring to have positive feelings towards this and I know that does help. When I was first going through my radiation and chemo, I lost my hair on the left side of my head and I told the wife I was going to have some fun and get a mohawk. Which I did and I also had it dyed six different colors just for fun and I did have fun with it. My hair has since grown back to normal. It has been one year fighting this crap but I just keep thinking positive. You just cannot let it get you down. No matter what the doctors say make the best of it and live life as if it were to be your last day, but don't let it get you down. Take care and god bless everyone and their health. Edward K. Wed, 11 Jun 2003 00:00:00 GMT Hi my name is Mike Burkholder and I don't know if you seen this yet IF IT WORKS, it will be the first treatment for malignant glioma, the deadliest form of brain cancer. Brain tumors affect about 18,000 people in the United States every year, killing 13,000. Gliomas are responsible for about half of all the cases. "The bottom line of gliomas is that they are bad. Everyone dies within a year," said Dr. Frederick Lang of the University of Texas M.D. Anderson Cancer Center in Houston. GENE-ALTERED COLD VIRUS Lang and colleagues used a genetically engineered form of a common cold virus known as an adenovirus. They weakened it so it could not affect healthy cells, then gave it an added genetic "key" to open the door into cancer cells. When they tested it in mice injected with human brain tumor cells of a particularly nasty nature, called glioblastoma multiforme, it apparently cured 60 percent of them. "The animals lived 140 days - we took the brains out at that point and found no tumors there," Lang said in a telephone interview. Normally, mice injected with human brain tumor cells die within 20 days. "We've never seen this kind of response before with any other treatment tested in either animals or humans," Dr. Juan Fueyo, who led the study, said in a statement. TESTING IN HUMANS PLANNED Writing in the May 7 issue of the Journal of the National Cancer Institute, the researchers said the institute will work to produce a drug-grade version of the therapy to test in humans, possibly by late next year. The researchers, who included a team at the Institut Catala d'Oncologia in Barcelona, Spain and the University of Alabama at Birmingham, are also working with the FDA, which will have to approve any human trials of the new approach. Scientists point out that it is often easy to cure lab mice of cancer, in part because they are injected with human cancer cells. Human cancer develops through complex processes. But Lang thinks his team took this into account and said the tumors were not affected by any other treatments. "We used radiation, we used standard chemotherapy and we even used a lot of novel chemotherapy," he said. "Sometimes we extended survival but eventually all the animals died. But with this particular agent, we actually had what we thought were cures." Human adenoviruses are being studied for a range of medical uses, from cancer therapy to gene therapy, because they are very good at infecting human cells. One fear is that the immune system will recognize them and either overreact, causing illness, or kill the virus before it can do any good. But Lang said because the viruses were injected directly into the brain tumor, this should not happen. He also said the team wants to find out why only 60 percent of the mice were "cured." "It could just be in those cases the tumor grew faster than the virus could replicate," he said. Or it could be the injection was not done properly. My wife has this too and has five more radition treatments. She had brain surgery to remove most of it, we just hope it comes in time. And good luck to you and yours. Rosemarie B. Thu, 12 Jun 2003 00:00:00 GMT My husband had a seizure on 11-7, on 11-21 they discovered a brain tumor, on 12-4-02 they did the first brain surgery - he had Glioblastoma Multiforme Astrocytoma Grade 4. He was also given a year- he had radiation-which he tolerated very well and on 2-28 he went back and had the radiation beads (waffle beads) put in his brain. He never gained much after that surgery - I am sad to say we lost him on 5-13-03 - just a month ago - I am now trying to understand why this had to happen and why they can't prolong the person's life with quality - especially with all the modern things nowdays. It is just cruel - they also gave him 1 year. I hope and pray that everything works out for you. Karen Karen C. Thu, 12 Jun 2003 00:00:00 GMT Hi, Yes I had just recently saw that information about the mice test. I sure hope and pray that it is an answer for all those out there that have this horrible disease. My husband only lasted 6 months - I lost him on 5-13-03 - just a month ago - he fought hard but the battle was not to be won by him. I am hoping I will eventually hear there is a cure for this tumor. Good Luck, Karen Karen C. Thu, 12 Jun 2003 00:00:00 GMT Hi, I was just diagnosed with an astrocytoma stage 3, two weeks ago. I am 21/F and my parents passed away 9/11. I am very scared and none of my friends really have any advice. Does anyone have any postive news or good advice for me? I would really appreciate it...I don't really have anyone to talk to. Anything would help, thanks! Blair W. Mon, 16 Jun 2003 00:00:00 GMT Hi My name is Ed K. and I have written to a few people with cancer looking for info or suupport. I was diagnosed with astrocytoma stage 3 18 months ago and it does set you back upon hearing the bad news. It took me and my wife a couple of weeks to accept it and I finally said hey, its not getting me. It took my sister 11 years ago. Mine is inoperable and I went through 7 weeks of radiation and chemo at the same time. I still am doing chemo 1 week out of the month and every 6 months I go for a MRI to see how things are doing. Well as of June 03 I have a hole in my brain about the size of a half dollar and a finger that has shrunk from 1.6 cm to 1.2 cm. I will have one in December again to see where I stand. I am feeling good and I wake up every morning and thank god for another day. My chemo treatments are by a pill called Temodar and I take a pill called Anzemet. Which really works good. No nausea whatsoever. If you feel any change in your body while on any of your meds no matter what it is do not be afraid to tell your doctor what is happening. I had to many of times when I first started my treatments even when I was still in the hospital. The doctors get you started on meds which they do not know how your body is going to react to all the meds you have to take and they just keep changing it to where your body will accept them at the same time. Just do not let it get you down and keep telling yourself you are going to beat it. I had fun with my radiation when I lost my hair on my left side and it was starting on my right side. I went to the beauty shop and got a mohawk and had my hair dyed about 6 different colors just to show it that I was not giving up. I feel pretty fortunate for being given 6 months to 1 year and I am kicking the sh t out of it. I am going to try and send a photo of me with my mohawk just so you can have a good laugh. And that is what you have keep doing. Do not get down on yourself. Just keep thinking positive and enjoy every day to the utmost I know there will be days you will feel like crap but you must just keep your head up and keep thinking positive. wish you luck and if you need someone to just to reach out to get in touch and I will try and help. Ed from Bullheadcity Edward K. Wed, 05 Nov 2003 00:00:00 GMT I, too, was diagnosed with this tumor 12/26/02 and given a 2-5 year expectancy. Mine has a WHO grade of 2, which I am thankful for the low growth even though it's still malignent. My Doc has me on 2 chemo cycles of Temodar followed by an MRI which has shown the tumor to have stopped growing but not declining. So far I have been able to maintain my independence, although a good day can change in an instant. Has anyone ever beaten this tumor entirely? Radiation isn't an option and my Doctor says he would have to take out 3/4's of my brain if I considered surgery. Any info would be appreciated. Mark E. Thu, 11 Dec 2003 00:00:00 GMT My mother was diagnosed three weeks ago with an inoperable Grade III astrocytoma in her right parietal lobe. Before diagnosis she lost use of her left side so she cannot walk or help getting herself to the bathroom. She is going to start radiation and Temodar next week. I hope you are doing well-we are looking for survivors to give my mother some hope. Please let me know how you felt during treatment, too. Thank you. Becky Loose beckyloose7@aol.com Becky7 Tue, 27 Jul 2004 00:00:00 GMT My heart aches for you. I cannot believe you are going through this without your parents. My family has just been introduced to the horrible ordeal of brain cancer. My mother was diagnosed with grade III anaplastic astrocytoma that is inoperable. She will start radiation and Temodar next week but in the interim lost use of her left side so she struggles to keep a positive outlook. (One day she was active and the next she was in a wheel chair with strangers wiping her bottom). The one thing I am sure of is the prayers, care, and kind gestures from friends, family, and total strangers are a comfort at this terrible time. I would love to reach out and offer myself as a friend. You are not alone. I will pray for you. I am online researching treatment and will do that for you, too. Please let me know what I can do. May God bless you. Becky L. Becky7 Tue, 27 Jul 2004 00:00:00 GMT Hi. I am 21/F and recently had a grade 2 astrocytoma resected. I can't imagine going through it without my family. It must be so hard for you. My thoughts are with you in this hard time - we can keep in touch if you like? Cat_82 Sun, 01 Aug 2004 00:00:00 GMT Ed, I was encouraged by your message. You are kicking the crap out of your diagnosis! My mom was diagnosed in June 2004 and was given 6-12, too. She is going through radiation and Temodar with minimal side effects-just tired. Unfortunately, the tumor's invasion took most of the movement of her left arm and leg so she is in a nursing home receiving physical therapy. Please respond so I know how you are doing. It is very hard to find survivors of this type of cancer. God Bless! Becky L. Becky7 Thu, 02 Sep 2004 00:00:00 GMT Hi Becky, Sorry I have not been on line for awhile but I am back. June 5th of 2004 I celebrated my second year of fighting my astroctoma stage 3 cancer. I had since then a MRI in august and the results were I have beaten my cancer. Which you knew was inoperable. I think with my will power to fight and have some fun while I was battling it helped greatly and of course praying to god and thanking him every morning I woke up. I am not back to work yet due to the fact that I just finished my last week of chemo. I also was on temedar and it works. Tell your mom I am praying for her just as well as of every one else. Try to keep her in a good a since of humor and giving her the strength to battle this crap. I take and mohawk and color my hair every year just to let it know I have not let my strength down. I hope your mom does well. Keep up the strong will to battle but enjoy every day like it was before this happened. Best of luck and will keep in touch. Ed from Bullhead Edward K. Mon, 13 Sep 2004 00:00:00 GMT Edward, I am sooo happy to hear you have beaten your cancer! This gives us so much hope. Is it gone or in remission? What part of the brain? Thank you for responding-I received your message right before we left for a doctor's visit-doctors won't tell us much which is scary. May God continue to bless you! Becky7 Fri, 17 Sep 2004 00:00:00 GMT Joi A, In reference to your husband's brain cancer. I am also fighting brain cancer. The same as your husband but I am in stage 3. The doctors gave me 6 months to 1 year. Mine was non operable. Well 2 and 1/2 years later I am steel here and it has gone. My older sister had stage 4 just like your husband but this was 12 years ago without the technology they have today. I to was scared at first but I said to myself one day about 2 weeks into it and said it is not going to beat me. I have solid belief and straight to fight it. Check out these cancer hospitals in the country that are doing these trial medicines and see if you can get him in one. I know stage 4 is deadly, but think positive. I know its a hard road but don't let it take you or your husband down in the dumps. You have to think positive and try to live your normal lifestyle. Sorry if you think I am nuts or something but that is part of being strong and positive about this disease. I always am here reading the message board so if you want to reply be more than happy to. Also I am giving you my phone number to call and talk if you would like. My name is Ed.Wish you and your husband well and stay positive. Ed Edward K. Thu, 23 Sep 2004 00:00:00 GMT Just read your message. My MRI and the doctors say I beat the crap. My tumor was in my left side right behind my left ear. The doctors said if you could see in my ear it was about ½ inch in. I hope your mom is doing good in fact tell mom I am praying for her and you and to keep fighting. A lot of support from family and friends is what I think kept me fighting. I will pray for you and your mom just as I do for everyone with is deadly peace of shit. God bless and hope to hear gooooood news from you. Ed from Bullhead. Edward K. Thu, 23 Sep 2004 00:00:00 GMT An MRI was done after my mother completed her 31 radiation treatments and two rounds of chemo, and the scan shows the tumor GREW. 5cm. It was decided that her tumor is a Glioblastoma Multiforme instead of the grade III aystrocytoma. We are devasted and our only hope is Gamma Knife which the doctors are discussing. Any info or advice will be appreciated. We are looking for alternative therapies and clinical trials. Becky7 Fri, 24 Sep 2004 00:00:00 GMT Becky how are you doing. I hope your mom is doing good. My cancer was (see how I said was) by my left ear. The docters said if I could look in my left ear that the main tumor was about one half inch in.I know it is tough to get the bad news but you can not give up. Keep you and your mother thinking positive. I know just as well as any other cancer victom that you are on barold time. You just have to make the best of it and keep thinking positive. I can not remember the hospital in California but there is a Dr Black and a Dr Yu that are looking for people with brain cancer to get into exparimental treatments. Well I am tired and ready for bed so until net time keep the faith and god bless you and your mother. I hope when I hear from you that it is good news. Ed from Bullhead. Edward K. Thu, 07 Oct 2004 00:00:00 GMT I am a 23y/o female and was diagnosed with a brain tumor a month ago. Biopsy revealed a Grade 2 diffuse fibrillary Astrocytoma. The neurosurgeon discourages surgical removal until I become more symptomatic and discourages radiation unless it progresses into a higher grade tumor. Any information out there? I would appreciate any input at this point and I am here if anyone needs to talk. Thanks and good luck to all Alliesmommy Wed, 20 Oct 2004 00:00:00 GMT We found out that my dad was sick just last September. We were all shaken when we discovered that he's got cancer. It was last month when his doctor told us my dad's got cancer. High grade astrocytoma...I don't know exactly what it is but we know it's something really serious. It's weird how these kinds of things come by but one truth I'm holding...there's no trial that God will give us if He knows we can't handle it. Even if your husband's doctor told you he's got a year to live, don't lose hope. God has a reason. I'm even advising you to to hold on and don't lose hope. God is the only one who knows our destiny. Only He can tell when we are to die. And if even what the doctor told you is right, don't lose faith. He was just being reborn in another life...where eternal happiness exists. Hope we could be friends... Jlsegirl Sun, 07 Nov 2004 00:00:00 GMT Hi, You are so right to believe that God does have your day. When he needs you to do something for him his calling is not to be up to you. The only thing you can do is live life to the fullest and be greatful for everyday you are here. He has a day and time when it is your time to come forth and to do something that he has for you to do. But in the mean time sick or heathty enjoy and thank the lord for every time you wake up and enjoy another day of living. I know I do. I was diagnosed with astroytoma stage 3 two and one half years ago. The doctors gave me 6 months to a year. Well I did not give up. I have written letters earlier in this chat room and if you go back and read the messages to the other people you will see what I have been doing to beat it. My last MRI 2 months ago gave me the best news I could ever had herd. I am cancer free. I beat the killer. I hope with all my heart that no matter what the doctors say........DO NOT GIVE UP. Like you said GOD has your number, well enjoy it to the fullest because he might change his mund for some reason or another. TO ALL KEEP FIGHTING AND GOD BLESS Ed from BHC, AZ going on 3v years and I beat the crap. BYE Edward K. Wed, 17 Nov 2004 00:00:00 GMT Almost afraid to ask...can you give any results? Garland Fri, 05 Aug 2005 00:00:00 GMT To Garland, My mohawk did not have any medical effect on my cancer, which was aniplactic astocytoma stage 3 brain cancer, but it did give me humor and help to think positive to fight it. I was in the treatment of chemo and radiation when I started to lose my hair on my left side of my head when I came up with the idea to have some fun with my battle. So I went to hair cutters and told the girl to mohawk mt hair. Well she new what I was going through and she cut my hair and she says you want to have a little more fun and I said sure. She then gets some hair color and made it red, green, orange, blue and yellow. Well my wife and I liked so much we went to a beauty store and got the dye and the colors in which my wife did my hair about every month and a half. You could not believe the response I got from people when I went to stores shopping. Some were good and a few people were just rudd. But I would just reply to there remarks about my situation and I would just imparis them when I would ask them if they knew what astocytome stage 3 was and they would just run out of the store. I know do it every year on my aniversery just to show that I am still fighting it. SO if you are going through the same think and want to bust your moral try it. If you want to see the pictures email me and I will try to send them. I hope this answers your question. I was givien 6 to 12 months to live and I just celibrated my 3rd year. Never give up hope. Thank you for your time ed from bullhead, arizona. Edward K. Sun, 07 Aug 2005 00:00:00 GMT Ed...thanx for the reply...I was almost afraid to ask because I didn't know if you would still be around! How has your quality of life been for those 3 years? I'm semi-miserable most of the time on the steroids and I'm all puffy and swelled and not very comfortable. can't seem to get a good nights sleep. I've made it past the 3-6 months "they" gave me and I just finished my 3rd round of chemo/temodar without a hitch. Gene P. Garland Sun, 07 Aug 2005 00:00:00 GMT Well I am glad you replied. I am doing just fine. Like I said I am thankfull for each day I am here. I noticed that you are taking Temedar. I to took that for 2 and one half years. I had a battle with it but the doctor put me onanzemet 100 mg per day and they helped me with the temedar.I tried the first anti puke pill and it did not do anything for me. Well I went to the doctor and told him if he could not get anything better I wanted to get pot to smoke while taking temedar. He put me on anzemet and it really helped. There were some days I had trouble with but not like the first stuff he had me take. So if your anti puck pill is not working tell them.My life really has not changed except they said I will never return to work but I find enough to keep me active. I pretty much living my life like I was before I was diagnosed except if I feel something funny going on in my head I keep watch on it just in case. My older sister who was diagnosed with astrocytoma stage 4 went through surgure 12 years ago. She went into remission for about 2 months after the surgury but it came back so agressively that there was nothing they could do. The doctors called it fingers which just spread so fast that there is nothing they can do except just giving her medication to help with her final days. well that was 12 years ago and at that time they did not have the teck they have now.Like I said you have to have faith in your medication and your doctors plus have a positive additude. Keep in touch and god bless you. keep fighting. ed from bullhead Edward K. Sat, 13 Aug 2005 00:00:00 GMT Hi, my name is Sandra and my husband's name is Robert. My husband was diagnosed with a grade 3 astrocytoma in June 03. He had an emergency surgery and was on radiation and chemo. He did very well for 14 months while on Temodar, but when he when back to the doctor for a repeat mri, they found that the tumor had grown significantly and is now a grade 4. He just had his 2nd operation in July 05 and is now doing chemo while awaiting this new trial. I am so glad that I have had this chance to read your wonderful story. Keep your positive attitude! You and your family are in my prayers. Sandra(Rob's wife) Lytlebit Mon, 29 Aug 2005 00:00:00 GMT Hey Ed from Bullhead! What a awesome person you must be. Thank you for all of the encouragement. I just found this site this wkend. Mr brother (59) was dioagnosed in December with stage 3 astrocytoma. He just finished chemo and is completing the 35 days of radiation (has two more to go). It's been a nightmare as he just collapsed with a seizure end of Oct. He was physically and mentally exhausted and ready to bail out. But the past two days, thanks be to God, I consider incredible blessings. He's not as depressed, stopped to see friends on his way back from radiation , and even made it to church!!! We are so hopeful and grateful for the glimmer of hope. We pray a lot and will continue to do so. If you don't mind, I'll add your intentions and those of this group to my prayers. Thank You! Bertyg Sat, 25 Feb 2006 00:00:00 GMT My son, also 23, soon to be 24 has a Grade 2 Diffuse Astrocytoma. Parts of the tumor suggest Grade 3 Anaplastic Astrocytoma. My son had a seizure on 6/14/05, surgery in November 05, completed 6 weeks of radiation in February and is on his 4 round of Temodar. He's doing pretty much everything he did before except drive and is anxious to drive again. Although he has been on dilantin since June 05, he missed a dose and had another seizure towards the end of October. He has just starting to get sick from the chemo but is doing really well. How are you doing now? Are you still in the wait and see mode? Would like to know how you are doing. Paul's Mom Bay418 Thu, 06 Apr 2006 00:00:00 GMT God bless you, one and all ! My Beloved Husband Don, has been diagnosed 6/06 with stage 3 astrocytoma. we will be having Surgery 6/29 followed by radiation. I have Loved hearing what little positives there are on this subject matter ! If Any one can beat it he can! He is a very strong hard working 52 year old He has 3 drilling rigs and 100 head of cattle between the two He is working all the time!! Intill his seizure on 5 /20 /06 the biopsy kicked him down a bit and recovery from that was and still is s l o w... Dilantin keeps him sleepy it seems but just the last few days he had more strenghth Enough to go to town and send off the mail or stop buy the 7-11. then he is wipped out and takes a nap! This is all so crazy he feels FINE !!!!! just tired !!!! the biopsy was so hard on him because it took them 5 hours of him being "under" to get the Biopsy . Because it is SO Firm ! the team of specialists have never seen anything firm like that before and it was tough to get a biop. I just wanted to post somthing and get a word out to you all I have and will pray for all of you. I also wanted Ed to post again So we all know he is still surviving If he doesn't reply we will all just assume that he is so cancer free that He doesn't even think about it any more ! God bless you one and all kick butt and take names ! look at the word cancer the first 3 letters are C A N Not e a s y But CAN ! You can kick it. it's just a heck of a battle ! Gods blessings to you all Cherratina (with the best hubby in the world !) Cherratina Wed, 07 Jun 2006 00:00:00 GMT Hello everyone, I am still alive. Just celibrated my 4th year of betting brain cancer. I have been going through some tough times lately. My oldest brother died in noveber with a heart attack. getting over that we were embraced by the marine corp that we lost our son over in iraq. So time has been pretty hard and that is why I have not been on line.I am glad your husband is doing well. Just keep the positive thought have fun and live every day to the fullest. Just think positive and enjoy every day together. I no it is tough as me and my wife went through it. But it is not over you just have to pray and hope for the best. Like I said just keep thinking positive and thy to have some kind of fun with it while you are here on earth. You know, ennjoy the time with your loved one the family, grandchildren and freinds. Just rejoice every day you have and make the best of them. I know I do. Sometimes I think that is what keeps me going. Till later take care and god be with you. ed from bullhead Edward K. Thu, 15 Jun 2006 00:00:00 GMT thank you for your reply . I am so sorry to hear of your losses. Please think positive, and stay well Gods blessings to you and yours Cherratina Cherratina Wed, 21 Jun 2006 00:00:00 GMT Dear Ed- Am so very sorry for your profound losses. I have gone back to this site and reread your inspiring comments time and time again and have prayed that you are surviving and thriving. I will now pray for your continued ability to cope with these tragedies. I wrote several messages back as my brother was diagnosed with stage 3 astro. He is now on his 5th round of the 5 days on 2 off of temodur. I now in remission!!!!,and we are rejoicing! Never dreamed we'd have this time. Wish I could give him some of our enthusiasm. Keep the faith - God bless you! berty Bertyg Mon, 10 Jul 2006 00:00:00 GMT I wish that every thing is going well for everyone that I have been in contact with. I am doing well. I hope everyone who has a family member or friend with cancer is doing good. Keep thinking positive and take it day by day. If you can think positive hopfully you can beatit. I do understand that sometimes it is to far goon but you have to think like I did. The doctors only gave me 6 months to a year and low and behold I am a 4 year surviver. I am also a commitee member with we care cancer which is with relay for life, amrican cancer cicioty. Last year for the relay for life we rased 65,000 dollas. well I have to go but I pray for everyone and may god bless you in the way he has me. Cncer is tough sometimes you can beat it and other times it is to far gone. But I say what ever the circumstances may be just try to live every day to the fullist. gog bless you and you are in my prares. ed from bullhead Edward K. Thu, 20 Jul 2006 00:00:00 GMT My daughter has a Grade 4 anaplastic astrocytoma. It is located in her thalamus. It is inoperable. She has done radiation for 42 days, and now she is finishing her 8 month of chemo. Temodar and CCNU combined. It has been tough. Her last MRI showed no change in the size of the tumor. However, it is not growing. She is such a beautiful little girl, and such a fighter. It is so hard to see her going through something so hard. If anyone has any information on an astrocytoma located in the thalamus and how treatment went for them please email me. She goes for her last MRI for the clinical trial on the 6th of September. I'll try to remember to put an update on the website. Thank you for all your messages. They have really inspired me. Susan Winstonsaint Wed, 23 Aug 2006 00:00:00 GMT I was wandering how your mom is doing. My daughter is also fighting a grade 3 anaplastic astrocytoma. She lost the use of her right side. She was diagnosed 13 months ago. We just finished the second phase of her treatment. How is your mother's treatment going? If you have any questions 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 ---- My thoughts and prayers are with you. Winstonsaint Thu, 21 Sep 2006 00:00:00 GMT My mother's tumor grew with treatment. It was actually a grad 4, GBM. She died on November 20th, 2004. Thank you for your prayers. I will pray for your daughter. She is young and has a much less aggressive tumor. What I learned from my mother's illness is that tomorrow is promised to no one. Live for today and enjoy it to the fullest. And, most importantly, love transends death. God Bless. Becky7 Thu, 21 Sep 2006 00:00:00 GMT My mother (61 years old) was also diagnosed with Astrocytoma grade 4 last October. The tumor was 2.9cm November 28th she had Gama Knife surgery (radio Therapy), The tumor came back to the same size by Early February and we took her to Memorial Sloan Ketering in Manhattan for surgery. The tumor then cam back again and in April 13th my mom went through with yet another surgery. In late June an MRI showed the tumor back again and the surgeons at Memorial decided no more surgeries, they gave her 1 dose of chymo CNU and sent us home. It has been almost a year now since her initial diagnosis and she is on Hospice home care. Memorial Sloan Kettering www.mskcc.com has so much information on alternative medicines available and trials, My Mother's Neuralogist was Dr Nolan and her surgeon was Dr Gutin both great doctors. Unfortunatly in my Mom's case it was too late to do anything. Good luck, you will get through this. Hanan Fri, 22 Sep 2006 00:00:00 GMT Hi All, it is my first time that I write on this forum. My wife has been diagnosed lately with a grade 2 brain tumor in the left temporal lobe. After consulting with many neuro-oncologists in the US and in Canada, the recommendations were contradictory. Some of them suggested to operate right away, while others suggested to monitor the lesions for the longest time possible, since ( according to them)the operation does not increase life expectancy. They claim that this theory is very clear in the literature. A neuro-ocologist suggested to undergoe a stereo tactic biopsy, and nother one an open biopsy. We are very confuse about the decision to make, since May the lesion did not increase in size. Any guidance that anyone could provide me with would be much appreciated. God bless you all. Mikez Fri, 22 Sep 2006 00:00:00 GMT I am repling to the lady with the husband with a brain tumor. I have a astrocytoma brain tumor. Mine is in my brain stem and medulla. When they done surgery they could not remove it because it is wrap up in my medulla. So all they Could do is radation. They told me if it starts growing i would have 6 months to a year. I was Diagnosis in 2004 and it has not started growing yet. So there is hope. Just keep your chin up. I will keep yall in my prays. Shona Shocas6970 Wed, 11 Oct 2006 00:00:00 GMT I know it is hard to go thru this with family. I know it is going to be hard for you a lone. I am 36/f and have a astrosytoma in the brain stem. I was diagnosis in 2004 and i have been in a wheel chair since. It is hard to deal with some times but what i do is sit out side and look at the stars to get my mind off it. I know people dont understand what you are going thru and it is hard to tell them how you feel. But it is good to talk and get it off your chest. I no treatment for me was hard but i went to gainsville for radation and stayed in what the call a hope lodge. Its a place where people stay while there in treatment for cancer. It help me because i could talk to people that where going tru the same thing. There is hope for people and i fell we all deserve that. But just hang in with friends an other family members and if you need a buddy just write back and i be there to talk. My doctor told me yesterday that tomorrow Is another day and things can change. If any one Need to talk to Shona --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- Shocas6970 Wed, 11 Oct 2006 00:00:00 GMT hi! my 14 yr old nephew has been diagnosed with grade II astrocytoma last oct 14, 2006 after a seizure. this is the first medical crisis in our family and it had to happen to a child. the news left all our knees weak. the tumor is located on his right brain. a biopsy was done and the doctors told us that it has to be removed by operation but they don't want to recommend it because it would affect his memory and his vision so they just planned a chemotheraphy session. reading your messages has inspired me and gave me hope that he can and will survive it. prayers is all that we now. i wish all people out there to have faith and still believe in the power of prayers. till next time. GOD BLESS! Nk22wa Sat, 28 Oct 2006 00:00:00 GMT Keep praying. My brother (59) had seizures Oct 2005 and was diagnosed in December with stage 3 astrocytoma. He had surgery to remove the part of the tumor that they were able to remove. He had chemo-radiation for 35 days and now is on chemo (temodur) on a 5 day on 28 off cycle. He's doing well and we're blessed to have him. No one thought he'd still be with us. He knows as do we, that it is the power of prayer that has sustained all of us. Will remember your nephew. Bertyg Fri, 10 Nov 2006 00:00:00 GMT hi! its good to hear from people about these things. my nephew will be starting radiation/chemoteraphy on nov. 14. we're all hoping for the best even if they have only given us 5 yrs to enjoy and take care of him. its sad but we're all hanging on. thanks again. hope we all get through all this well. GOD BLESS. Nk22wa Sat, 11 Nov 2006 00:00:00 GMT I was just reading throught these messages for support. I saw yours and was wondering how you are. I did search the site for "thalmus" and found discussions that might help you. They are at http://www.cancercompass.com/message-board/message/single,2737,1.htm Or, you can just type in a "thalmus" search. My prayers and good wishes are with you. Bertyg Sun, 12 Nov 2006 00:00:00 GMT hi, everyone! HAPPY HOLIDAYS!  GOD is really Great!  my 14 yr old nephew started his radiation/chemo Nov. 14 until yesterday Dec. 29.  Would you believe? Everyday for him was a good day! I swear, NO BAD DAY for him the entire duration of his treatment.  NO NAUSEA! NO VOMITTING! The only thing negative that happened was when he lost his hair at the lower back portion of his head and the steroid pimples he had on his face.  We were all so very happy.  I think his being still young with a really healthy body and good appetite because of the steroids attributes to it. And the FOREVER Living products that his father has been giving him is really good.  We are all hoping for his fast recovery.I wish and pray for everybody's good health and recovery as well.Many thanks to everybody who had prayed with us! GOD BLESS US ALL!  AND A PEACEFUL AND HAPPY NEW YEAR TO EACH AND EVERYONE OF US!Pearl Nk22wa Fri, 29 Dec 2006 00:00:00 GMT  On 1/6/2003 Edward K. wrote:Hi. My older sister had astrosytoma stage 4 11 years ago. I regret to say she had surgery and chemo but lived only 1 year. It came back so agressive that they could not do any more. I don't want to get you down because they have come so far along with treatments so you really don't know. I also was diagnosed with astrosytoma grade 3 just last June and mine is inoperable. I have gone through 7 weeks of radiation along with 7 weeks of chemo. I now have chemo once a week for 6 months. I just had a MRI last week and I am waiting for the results. I feel good and I feel like I am beating it. I just keep thinging positve and just keep fighting it. I hope you do well and god bless.  Landing Sat, 20 Jan 2007 00:00:00 GMT Hi.I'm Parimal. I was diagnosed for Astrocytoma grd 3. I got operated in Dec 05 and today I've recuperated completely. I got an MRI last month and surgeon said nothing except the scars of surgery is left. I was under ayurvedic medication and didn't go for radio or chemo therapy. It was surprising for the doctors the way I recovered. I must say it has a cure, at least in India. Wish you all the best.  Parimal Thu, 01 Mar 2007 00:00:00 GMT Edward I need to know if ur ok.. I've read ur messages... I want to know if ur ok.. please please let me know... Soeler Mon, 19 Mar 2007 00:00:00 GMT  On 3/19/2007 Soeler wrote:Edward I need to know if ur ok.. I've read ur messages... I want to know if ur ok.. please please let me know... Hi Garland Sorry I have not been on site. Yes I am still kicking and doing well. June 5th will be my fifth year and I am still gratefull. We are getting ready for our relay for life walk on May 4th and 5th. I have been realy involved with we care cancer in which I am vice president off our local chapter. I think it helped me also becauce we have group geat togethers once a month for anyone who wants to attend. I think it is a great thing becauce of the people that come to these so called meetings and you get to here other peoples views of their fight with cancer. I hope everyone else is doing fine and keeping up the strength with there battle. Like I tell everyone I talk to live life to the fullest everyday you wake up because you never know if it be your last. In another week I will get my wild mohawk for relay. It makes alot off people laugh and I sometimes wonder if these people think I am a little nuts, but when they ask me why a man my age has a hair cut like this I tell them the store in which some people think it is cool and some thik it is stupid. As far as I think about it they can think what they want but it is what I think what has done for me. Well sorry for not keeping in touch but I will try to be on line more often. If you want I am going to have some pictures of me and my mohawk if you want to see it. To everyone out there thar are battling cancer try to think positive and keep strong. Till latter god bless Ed from Bullheadcity Edward K. Sun, 22 Apr 2007 00:00:00 GMT Hi Parimal,What ayurvedic medicine were you taking?My brother has had an astrocytoma for ten years. Still looking for a cure/treatment. He has had surgery, radiation, and chemo.For others seeking a treatment for glioblastoma multiforme, I just came across this tonight:http://www.virtualtrials.com/news3.cfm?item=3913   Relik Sun, 08 Jul 2007 00:00:00 GMT  On 6/16/2003 Blair W. wrote:Hi, I was just diagnosed with an astrocytoma stage 3, two weeks ago. I am 21/F and my parents passed away 9/11. I am very scared and none of my friends really have any advice. Does anyone have any postive news or good advice for me? I would really appreciate it...I don't really have anyone to talk to. Anything would help, thanks!blair my name is mark and my wife of 26 was diagnosed with astrocytoma 2 weeks ago while giving birth how are fairing against this? doing well were was the tumor in you brain? any advice for me?mark   jack_0latern777 Thu, 30 Aug 2007 00:00:00 GMT  On 10/20/2004 Alliesmommy wrote:I am a 23y/o female and was diagnosed with a brain tumor a month ago. Biopsy revealed a Grade 2 diffuse fibrillary Astrocytoma. The neurosurgeon discourages surgical removal until I become more symptomatic and discourages radiation unless it progresses into a higher grade tumor. Any information out there? I would appreciate any input at this point and I am here if anyone needs to talk. Thanks and good luck to allI'm kind of new to this whole brain tumor/cancer thing so bear with me.  About a month ago (8-6-07) I took my girlfriend up to Evanston Hospital in Evanston, IL for Bariatric Surgery.  She was jsut starting to wake up  from the surgery when my world got flipped turned upside down.   I was hit with a grand maul seizure out of the blue.  I had no symptoms or anything.  I had no clue what was happening to me.  Evanston is a teaching hospital for Northwestern Illinois University, whom I later learned has one of the best oncology programs in the country.  I had a CT and an MRI done that night and they admitted me.  They did a biopsy on Thursday and on Friday they told me preliminary findings found a grade 2 astrocytoma.  I went home and have done alot of research on this condition, with probably more yet to come.  I live about 6 hours south of Evanston, so treatment up there was kind of out of the question, but my doctor up there is working with the doctors down here and vice versa.  Here's the way I understand.  A grade 2 astrocytoma left untreated may and most likely will progress to grade 3.  Grade 3 is more agressive,, where as it may take grade 2 many years to progress, 3 will move to 4 much quicker.  All are malignant, but grade 2 acts like a benign tumor.  Mine can't be removed surgically without causing brain damage.  We are treating it with radiation now before it gets any worse.  If I were you I'd get a second opinion.  Northwestern sent my tests to Washington University in St. Louis and someplace else so they could all agree and the cancer doctors here agree with all other findings.  Personally I would not be happy with the "wait and see method" or wait until it gets worse to ddo radiation. But thaat's the technician in me.  Preventive maintanence.   I get dizzy and can't walk straight and sleep alot more than I used to.  I haven't had a seizure in over a week so knock on wood. I hate it.   The lord put me in the right place at the right time for all of this.  I wish you luck.  I hope this helps.  If you have any more questions or just need to talk go ahead.  BTW, I'm a 30/m.  A little older,, but not by much.   Later,Josh Jaymo Sun, 02 Sep 2007 00:00:00 GMT Ok, I just realized I replied to a message that was like 3 years old.  I feel very stupid.  I've just been looking for a board where I could possibly get information on my condition.  I almost feel bad referring to it as cancer, cause the way my doctors make it sound, a grade astrocytoma acts like a benign tumor, but I guess a little bit of cancer is kiunda like being a little bit dead.  If anyone has any information on this it would be much appreciated.    Thanks,                                                                                                                                                    Josh Jaymo Sun, 02 Sep 2007 00:00:00 GMT  On 11/5/2003 Edward K. wrote:Hi My name is Ed K. and I have written to a few people with cancer looking for info or suupport. I was diagnosed with astrocytoma stage 3 18 months ago and it does set you back upon hearing the bad news. It took me and my wife a couple of weeks to accept it and I finally said hey, its not getting me. It took my sister 11 years ago. Mine is inoperable and I went through 7 weeks of radiation and chemo at the same time. I still am doing chemo 1 week out of the month and every 6 months I go for a MRI to see how things are doing. Well as of June 03 I have a hole in my brain about the size of a half dollar and a finger that has shrunk from 1.6 cm to 1.2 cm. I will have one in December again to see where I stand. I am feeling good and I wake up every morning and thank god for another day. My chemo treatments are by a pill called Temodar and I take a pill called Anzemet. Which really works good. No nausea whatsoever. If you feel any change in your body while on any of your meds no matter what it is do not be afraid to tell your doctor what is happening. I had to many of times when I first started my treatments even when I was still in the hospital. The doctors get you started on meds which they do not know how your body is going to react to all the meds you have to take and they just keep changing it to where your body will accept them at the same time. Just do not let it get you down and keep telling yourself you are going to beat it. I had fun with my radiation when I lost my hair on my left side and it was starting on my right side. I went to the beauty shop and got a mohawk and had my hair dyed about 6 different colors just to show it that I was not giving up. I feel pretty fortunate for being given 6 months to 1 year and I am kicking the sh t out of it. I am going to try and send a photo of me with my mohawk just so you can have a good laugh. And that is what you have keep doing. Do not get down on yourself. Just keep thinking positive and enjoy every day to the utmost I know there will be days you will feel like crap but you must just keep your head up and keep thinking positive. wish you luck and if you need someone to just to reach out to get in touch and I will try and help. Ed from Bullheadcity  Carolyn18 Sun, 18 May 2008 00:00:00 GMT  On 6/11/2003 Edward K. wrote:Hi again. This is Ed again and I am doing fine. They say my astrocytoma stage 3 is going away. I have a hole in my brain the size of a half dollar from chemo and radiation. I have been tring to have positive feelings towards this and I know that does help. When I was first going through my radiation and chemo, I lost my hair on the left side of my head and I told the wife I was going to have some fun and get a mohawk. Which I did and I also had it dyed six different colors just for fun and I did have fun with it. My hair has since grown back to normal. It has been one year fighting this crap but I just keep thinking positive. You just cannot let it get you down. No matter what the doctors say make the best of it and live life as if it were to be your last day, but don't let it get you down. Take care and god bless everyone and their health. My friend was just told she has stage 3 astrocytoma. Glad yours is leaving. Anymore advice for my friend. God Bless You. Carolyn18 Sun, 18 May 2008 00:00:00 GMT In 2006 I was diagnosed with grade 2 astrocytoma.  My tumor was about the size of a lemon.  I was 35 years old.  After surgery I spoke with my surgeon and neuro-oncologist and chose to do the wait and see.  My tumor was about the size of a lemon.After a year and a half I went through surgery number 2 to remove a tumor about the size of a shooting marble.  I just finished radiation/chemo drug and I have about a two week break before I begin the chemo process.  The main advice I would give is to remain or become an arrogant SOB and stay positive.  I am bald, but I lost a limited mount of weight.  I am not going anywhere anytime soon.  ericc Wed, 28 May 2008 00:00:00 GMT Just a quick note of hope to all those out there wth a diagnosis of Astrocytoma grade 3 -- I was at the Dr today due to headaches and he asked me about my family's medical history - I told him my sister had a brain tumor 22 years ago. He asked me what kind and I didn't know - so I called my sister and asked her - she said it was an Astrocytoma grade 3. The Dr looked amazed and said - "and she is still alive" So I decided it was time to research what she had - and I found this message board. My sister's diagnosis - I remember the time well - it was very difficult - brain surgery, radiation therapy - then mental illness. She became disoriented and extremely suicidal for 2 years - in and out of hospitals while they tried to find the right medications to fix what was messed up with the surgery. Finally 3 years after surgery and medicated she was back to almost normal. She is still on a variety of medications for her depression and is more easily depressed now than she was as a child - but she is alive and well and active 22 years after the removal of her Astrocytoma grade 3. Good luck to all of you... stormyseas Fri, 06 Jun 2008 00:00:00 GMT  Just found this forum, after reading caregivers post  hope to glean some direction and help for a very dear friend, so here's hoping!! Our friend had a brain tumor (astrocytoma)10 years ago and at the time, to treat the tumor was given radio and chemotherapy, whilst the prognosis was not great recovery was slow but effective, regular scans show the tumour remains dormant. After 5 years of slow progress our friends mental health began to deteriorate, began having auditory hallucinations and to date these hallucinations have reached the point of despair for all around. Our friend refuses to believe only they can hear the voices and refuses to adhere to any medication plan laid down by the Psychiatrist, so has been offered no further appointments. I know this is a very small snapshot of the situation, but a question someone may be able to answer is, "would hypnosis be an option to motivate our friend to take the medication"? regards, Rob   peanut51 Sun, 13 Jul 2008 00:00:00 GMT JoiYou probably want to join us on the brain cancer discussion board as an astrocytoma is a type of brain cancer.  There is always lots of good info being passed around as well as lots of support and encouragement.  We all need it.  I had a meningioma, my husband has an oligodendroglioma, and my father-in-law had a grade 4 astrocytoma.  My best wishes to you.Jackiekay jackiekay Sun, 13 Jul 2008 00:00:00 GMT Hi allI am 42 with Astrocytoma gd 3. There is a new tool out of France http://www.lejdd.fr/cmc/societe/200835/le-laser-contre-le-ca that operates tumors on the brain tumors just successfully revealed. Hope this will save some of us.  Keep in Faith and Gold Bless  kishi Mon, 01 Sep 2008 00:00:00 GMT I also wanted to know if anyone with Astrocytoma is suffering severe dizziness and loss of balance? kishi Mon, 01 Sep 2008 00:00:00 GMT