Latest Brain Cancer discussions http://www.cancercompass.com/message-board/cancers/brain-cancer/1,0,119,5.htm Fri, 16 May 2008 00:00:00 GMT Fri, 16 May 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Our father was just diagnosed with a GBM.  We are currently at MD Anderson seeking their assistance.  We have so much information coming and are praying to make the right decisions and would appreciate any words of wisdom from anyone.  My dad is 55 and in good health with this exception.  We are praying that each decision we make is the right one to help from the initial treatment plan forward.  We are thinking it would be best to receive his treatments at MD Anderson since we do not have any neuro oncologists in Missouri, is that a correct assumption.  We are also under the impression that GBM patients start with the radiation and temador as the first treatment option.  We have read about other drugs being mixed with this treatment option, but I am thinking that that is after the initial treatment.  Thanks in advance for all your advise and my prayers are with all of you battling this.  Kim    http://www.cancercompass.com/message-board/message/all,24078,0.htm Thompsonherd Thu, 15 May 2008 00:00:00 GMT Hello....I have posted messages here before and gotten several helpful and caring responses so I thought maybe I would be able to get some advice. My son was diognosed last June with Glioblastoma, the original tumor was in the parietal area. After radiation and Temodar, he had recurrence in the same area, then went on Avastin & Ironitecan. While on the avastin & Ironitecan, he developed Hydrocepahalus. While recovering from surgery a new tumor in the temporal lobe and we just found out the cancer cells have spread to his spinal fluid and the lining of his brain. The Dr. said MRI a month ago showed only 1/2 the meninges enhanced, now the entire lining enhances. He had a spinal tap and it was positive for cancer cells. Obviously I am very worried. I know it is bad but I try to keep hope. He has had such a hard year, it almost seems like its one thing after another. In the past month alone we have been in Birmingham (UAB) 20 days, we live 3 hours away. ANYWAY... I was wondering if anyone has had a loved one that has had this happen. We have been given a grim prognosis but he will go thru a clinincal trial starting next week. It is Cytoxin, synthetic Scorpion Venom. Any advice will be so appreciated....Thanks so much! http://www.cancercompass.com/message-board/message/all,24071,0.htm mominbama Thu, 15 May 2008 00:00:00 GMT Can anyone tell me the difference between Avastin plus carboplatin vs Avastin plus CPT-11?  Is one more effective?  Are side effects different? http://www.cancercompass.com/message-board/message/all,24068,0.htm KathleenM Thu, 15 May 2008 00:00:00 GMT Hi my sister was just diagnosed with Glioma stage 4 cancer and she is 4 weeks pregnant. They said it's life span is 15 months and that you never go into remission. She had the brain tumor removed on Monday and they said they got all of it out. But that there could be microscopic cells floating and that they want to start chemo by a pill only for 15 months and radiation every day for 6 months. Is there any survivors out there with this type of diagnosis? http://www.cancercompass.com/message-board/message/all,24062,0.htm myweddingbus Thu, 15 May 2008 00:00:00 GMT Hello,My dad is declining since having a 2nd ressection done for his GBM IV. He lives alone and is very adamant that he stay in HIS home. My brother and I have been trying to spend as much time as we can there to help him function...but the last few days he's changed. His right side is so weak, he even fell down when we weren't there. He is going to the bathroom, taking his meds (somewhat)...that we can tell and getting himself dressed etc...making his ever so loved coffee in the morning. But I really wish he'd come home with me or my brother. My aunt and uncle also invited him to live with them...until he gets stronger...is what we tell him. He was suppose to start a 2nd dose of radiation today...but I called and cancelled because I just feel he is too weak to start any of that treatment right now.I know there has to be some kind of home health care or Visiting Nurse or something that maybe we could hire to check in on him during the day. My brother and I are trying to respect his wishes so much about not going back to the hospital. He does NOT want to go. And we definitely don't want to put him in a nursing home. His mind is too there for something that dramatic.Is anyone out there using any of these resources to help them care for their loved one.Thanks,Jill http://www.cancercompass.com/message-board/message/all,24059,0.htm Jilby Thu, 15 May 2008 00:00:00 GMT I still can not believe this is happening to my Dad. When I say it out loud it sounds so insane that this is actually happening. My Dad is in great spirits though and he is taking everyday as a challenge. He is the strongest person I have ever met. My Dad has his own business and is continuing to work even though he is going through radiation and temodar. Do you think this is a good think or a bad thing? I am scared that he is pushing himself to hard but other family members tell me this is a good way to keep his mind off it. I was wondering if anyone else had this same dilemma. This website has been so helpful already. I thought there was no one that knew what I was going through but here I feel I am not alone. thanks for all the support. http://www.cancercompass.com/message-board/message/all,24055,0.htm Cristen Thu, 15 May 2008 00:00:00 GMT Good Morning,I went to see Mother last evening, and she seemed in good spirits. She wants to continue the radiation (14) treatments and the temodar. Her spirits are high in getting better. On my way home last night, I thought about something, maybe I shouldn't ask, but I must for my own self knowledge. What happens a couple of weeks before someone passes with this type of tumor? If all fells and she dosen't make it, what happens? I must know, I must be strong, please if you can email me and let me know what to expect.... http://www.cancercompass.com/message-board/message/all,24045,0.htm underwood Thu, 15 May 2008 00:00:00 GMT Not even in my wildest dreams would I ever have imagined I’d be introducing myself to a message board dedicated to patients, families and friend of persons with brain cancer but here I am...Hello! I’m Sunny. My 61 year old Dad was diagnosed with GBM IV in Mar 08 after suffering from what the doctors thought was either a stroke or a MS brain lesion in early February. A decision was made by my Dad with the help of his “team” which includes his wife of 33 years, beautiful daughter (that's me), two sons along with their significant others, brothers, sisters and friends that he would demand the neurosurgeon to be as aggressive as possible with his treatment. On March 27th, the neurosurgeon was able to remove approximately 50% of the tumor. After a 16 day stay at the hospital and rehab center, he was sent home to begin radiation and chemo. My Dad has two weeks left to go with radiation and he is feeling great. A little tired and wobbly, nothing we can’t handle. The biggest supporter on his team is my daughter Sunnygirl who just happens to be Grandpa's best friend. There is nobody or anything in this world that can pull him out of funk better and faster than Sunnygirl.  My Dad’s spirits are extremely high and he has found comfort in posting inspirational messages on his Caring Bridge website.I know there will be good days and bad days. Today, was a good day and I feel blessed for that.Blessing to you all,Sunny    http://www.cancercompass.com/message-board/message/all,24032,0.htm SunnyMama Wed, 14 May 2008 00:00:00 GMT My dad's mri showed tumor progression and radiation induced changes today his oncologist said that it could be dead tumor tissue and that on the next scan the first of June we will probably see shrinkage.  The only concern is it did show swelling which she said was a concern but since he isnt' on any decadron now it was suspected.  Has anyone else had this where it looks like progression but then it shrinks and it was necrosis?Thanks and God bless you all!!! http://www.cancercompass.com/message-board/message/all,24029,0.htm flfrog Wed, 14 May 2008 00:00:00 GMT After reading posting of 4/28/08 concerning the usage of clomipramine I decided, why not?  Our neuro-onc. had never heard of this usage but said it couldn't hurt.  I wondered if a low-dose daily Tem. should be used in conjunction with this.  Brother dx. 9/11/07, inoperable GBM, almost tennis ball size.  I posted the "Stable MRI but patient decling"  message 5/4/08. We've stopped the 5/23 Temodar after 5 rounds post rad/chemo combo.  Will probably try the Avastin-CPT 11 and see if he can tolerate it.  Worried about the 2-3% chance of stroke or hemmorage during treatment, but at this rate he'll just get worse and slowly die.Anyone heard of patients having stroke during Avastin treatment?   http://www.cancercompass.com/message-board/message/all,24026,0.htm Sister-mar Wed, 14 May 2008 00:00:00 GMT  I am not very informed about GBM IV which my father has been digonased with about a month ago but this website and everyones posts are really helping me understand. I was wondering is Temodar --is that the oral form of chemo? http://www.cancercompass.com/message-board/message/all,24020,0.htm Cristen Wed, 14 May 2008 00:00:00 GMT      Scan read today. ALL CLEAR. Next scan not for 6 Months!!! Diag and surgery in Nov. 06. KEEP OUTLOOK POSITIVE AND GOOD THINGS HAPPEN!!!! http://www.cancercompass.com/message-board/message/all,24013,0.htm Brete Wed, 14 May 2008 00:00:00 GMT Hello Everyone,I checked out this site yesterday and read some of your emails, I read one about a Father 59 with GBM, I can relate to that, my Mother is 70 and has this type also.The oncologist tell us that it is to deep in the brain to operate. He suggest radiation and chemo. I had notice back in Febuary things were not good with her, she was sleeping a lot and off balance. She would call me and tell me she had fell again. I took her to her doctor and he seemed not interested though. He told her and I she was depressed and giving up on life. You see my brother 46 years old past in May 2007 suddenly, it hurt us all and Mom the most. So I went along with what the doctor said, but then the calls kept coming and meeting her in the ER. After a couple times of this I went to Mom and ask her to do somethings for me. I ask her to smile big, the smile was up on one side and down on the other. I ask her to raise her hands, she could lift the right, but not the left and the same with her legs. My first thought was a stroke, I called her doctor and told them I thought she had a stroke and to do a MIR. They did after I presisted. I will never forget that day when they called me in his office and said she had Glioblastoma Multiforme, stage 4 cancer, 2-3 months to live. He told us a biopsy, first to conferm and then treatments for 6 weeks. Skilled nursing for my independent Mother, who love to cook for us and have us over (1 sister and now 1 brother , six grand children).After 3 months, Mom is with us, but with the treatments; she can no longer walk, her vision is blured, her hair is coming out, confusion, swelling on her left side and can't do nothering, but lay in bed and eat sleep and talk to us the best she can. I have to wonder, is this coming from the tumor or the treatments, I think the TUMOR! At this point, all we can do is pray. You know when this happen, she told me...Life is a mystery, you never know what it will hand you. Mom wants to live, my sister is having a baby in September and she wants to see the baby...Dose not want to be alone, God help us and you also if you are going threw this. It is very hard, but eyes look to heaven, He will see us threw!Jennifer http://www.cancercompass.com/message-board/message/all,24008,0.htm underwood Wed, 14 May 2008 00:00:00 GMT My mom was just diagnosed with brain cancer on Friday.  The doctor says it is GMB.  Stage 4.  I dont know much about this cancer except what I have read on the intenet.  I keep telling myself that the doctor was wrong.  She had surgery on Monday and he removed 50% maybe more.  My mom is the toughest person I know.  She has hardly been sick in the 63 years of her life.  After the surgery she looked like she was ready to go grocery shopping.(her favorite thing to do at 7 am on saturdays).  She looks like she is 53, very young appearance.  She had been complaining of headaches, and had been misdiagnosed since January, until Friday night when we took her to the ER and demanded to know what was wrong.  I have been doing lots of research on the internet but I cannot find much on this type of cancer and what treatment center is the best with this type.  I will travel to the moon if I have to.  MD Anderson sounds good.??  We live in the panhandle of Florida and she is at Baptist Pensacola.  Her name is Grace Blockburger.  It would mean so much to me if all who reads this can please say a prayer for her and pls put her on as many prayer lists as possible.  If one person can beat the odds it would be my mom.  She is a fighter.  I bought her a card that sings the song......."I will survive".  She laughed.  Please respond with ANY messages of treament centers,  survival stories and best chemo/radiation, or anything that relates.THANK YOU AND GOD BLESS  http://www.cancercompass.com/message-board/message/all,24004,0.htm MyMomMyRock Wed, 14 May 2008 00:00:00 GMT Has anyone tried this and if so how did it make you feel? http://www.cancercompass.com/message-board/message/all,23998,0.htm Me-Denise Tue, 13 May 2008 00:00:00 GMT About a month ago my Dad was diagnosed with Glioma. He is 55 years old. They did surgery and were able to take out one whole tumor but there is still one left which they can no operate on. This tumor is causing him numbness in left foot and left hand. He has just started his treatment a week ago which consist of the chemo pill and radiation for a period of 42 days. As of now he looks and seems fine. I am trying to find out anyone who has gone through this or is going through this. Everything I read having to do with this type of cancer is not giving me any hope. I would love to hear from actually people and families who are going through this. I would appreciate any advice anyone has. Thank you. http://www.cancercompass.com/message-board/message/all,23990,0.htm Cristen Tue, 13 May 2008 00:00:00 GMT So my father who has had no feeling or ability to move his right leg has in the last two weeks started to develop feeling in his toes, started to wiggle his toes, and as of today is able to wiggle his leg. Not sure what this means.  His GBMIV tumor grew while he was on his inital Rad/temedor and we stopped trying avastin/cpt-11 when it put him in the hospital with infections twice. He has not had any active treatments since Jan.  We are not planning on doing another MRI because it could only bring bad news (if its not growing we won't be changing what we are doing and if it is growing we won't be changing what we are doing but will be able to start worrying about it) Just goes to show the brain is an amazing thing. http://www.cancercompass.com/message-board/message/all,23982,0.htm LovingSon Tue, 13 May 2008 00:00:00 GMT Anyone have any recommendations for severe fatigue. My wife has GBM IV and has been doing really well the Avastin+ CPT-11 since late January. Over the past two weeks the fatigue factor has been severe and she has been sleeping up to 20+ hours of the day. The first three months of treatments weren't this bad. Anyone with suggestions to help with energy levels (meds, holistic health, etc..)? The good news is the MRI today still shows a 95% shrinkage since January 21st 08 with the regimen she is on.  Thanks, EL  http://www.cancercompass.com/message-board/message/all,23975,0.htm evancheryl Tue, 13 May 2008 00:00:00 GMT Does anyone have his number?He called and said somone would follow with an appointment?We still haven't heard??? http://www.cancercompass.com/message-board/message/all,23966,0.htm sandram Mon, 12 May 2008 00:00:00 GMT My friend was operated on for grade 3 astrocytoma. They are going to start her on chemo pills, 5 days out of the month, also start radiation and then she will take pills every day when she is having radation. Can anyone tell me about the results of grade 3 astrocytoma? http://www.cancercompass.com/message-board/message/all,23962,0.htm Carolyn18 Mon, 12 May 2008 00:00:00 GMT Well my friends, it is Mother's Day and it is the first time I have been able to return to this site since my Mom died, it's kind of a tribute to her.After 2 1/2 years of surviving, my Mother passed away on April 22, she was 62.  She leaves behind her husband, three children, and eight grandchildren, all under the age of 8.  She was so loved and will be so missed, our heartaches are strong and our tears are many.We were so lucky to have had the chance to say goodbye, she decided on Easter to stop chemotherapy due to several complications including the loss of her entire left side.  During the three weeks at home, we were able to spend time with her, talk with her, and love her until the moment she did pass away.  We all are thankful and feel blessed to have had this opportunity.So looking back I would suggest to fight this disease with everything you have, try anything new that might give you more time, spend as much time as possible with your family, especially the grandkids and make sure you tell everyone how much you love them.  In the end it's all you have, I have the words, "I love you" will be etched into my memory forever, it was her last words to me.Thank you to everyone who has written to me, given advice and just offered support.  It is very much appreciated and I will forever be grateful.Momgbm60 http://www.cancercompass.com/message-board/message/all,23941,0.htm Mommgbm60 Sun, 11 May 2008 00:00:00 GMT I have only posted once before.  My husband was diagnosed 7 yrs ago with a ogliodendroglioma tumor.  We did surgery, chemo wafers, radiation and PCV chemo(on recommendation of MD Anderson).  In 2005 we did the gamma knife.  The tumor has started growing about 1 yr ago and is a steady growth.  We are now experiencing bladder control problems, increased seizures, increased headaches, unsteadiness, etc..  Has anyone had any experience with this type of tumor and insight? http://www.cancercompass.com/message-board/message/all,23938,0.htm stressedwife Sun, 11 May 2008 00:00:00 GMT Hello.....we are seeing my mom's radiation oncologist this week and I plan on asking him to order an MRI before the 6 months suggested by the previous dr. we saw.  If he says no, then I'll ask the oncologist. It's so hard to just up and change dr's when what they've done so far has worked! I hope we don't have to change dr's and I hope that my mom can enjoy this "stable" period to it's fullest.  On another note, I need some help finding activities to help my mom pass the time. She spent the entire winter talking about working in the yard when spring came around. Well, it's hear and everytime I ask her if she wants to plant flowers, or do some work in the yard her response is "I'm not ready for that yet". She use to enjoy watching shows on the food network, now she says "I'm not interested". I bought her a book on tape, again "I'm not ready for that". We went to the craft store...still "not ready for that". I don't know what to do and I am losing patience. I understand her vision is not the same and her comprehension continues to worsen but I don't know what to do to help her pass the time during the day. Does anyone have any suggestions??? Currently the most I can get her to do is take short walks and sit outside if the weather is warm enough. It wouldn't be that big of a problem but she is constantly telling me she's bored and basically asking me to entertain her.....argh....help!!!!!  thanks all!-h- http://www.cancercompass.com/message-board/message/all,23932,0.htm spagirl9191 Sun, 11 May 2008 00:00:00 GMT I came across some quotes from a cancer patient (not brain), and as we all know,  a brain cancer patient is in a class all its own particularly GBM -  does not even compare to any other cancer on the face of this planet in the devastation it causes. Diseases can be our spiritual flat tires--disruptions in our lives that seem to be disasters at the time but end by redirecting our lives in a meaningful way.There is in every  heart a spark of heavenly fire, which lies dormant in the broad daylight of prosperity; but which kindles up, and beams and blazes in the dark hour of adversity.Courage doesn't always roar.  Sometimes courage is the little voice at the end of the day that says I'll try again tomorrow.Every day may not be good, but there's something good in every day.Some days there won't be a song in your heart.  Sing anyway.We are never far from where we need to be.  God would not have brought us to this place in our life if He didn't have something for us to  receive. http://www.cancercompass.com/message-board/message/all,23906,0.htm CaregiverScott Sat, 10 May 2008 00:00:00 GMT We're looking for feedback on anyone's experiences with radiosurgery.  My mom(59yo)  had a promising resection 10/07 Lt. parietal lobe plum-size GBM, followed by rad/Temodar; has fit in 2 rounds of Temodar since then (in between low platelets/neutrophils).  There were 2 new areas less than 6-8mm of new growth separate from the surgical bed.  This was treated with radiosurgery this past Tues.  She seemed fine until noon the next day when she had right-sided seizures. It finally got in control after pushing 4mg Ativan, IV anti-seizure med & some Decadron.  She continues to have "after-shock" seizures which seem worse anytime she tries to do anything - she looks like a Parkinson's case and is a full assist in getting around the house/showering, etc.  She's had a 2 day dose of oral steroid dose-pack and currently the neuro is having me orally bolus her with oral Dilantin 600mg today(normally 300mg & has been seizure free until now) (she really does not want to go back to the hospital for IV's).  She's looking for encouraging words that hopefully this will get better.   Thanks - Nikki http://www.cancercompass.com/message-board/message/all,23897,0.htm Smilie Fri, 09 May 2008 00:00:00 GMT