CancerCompass message board discussion started by Alleyal2u on 4/16/2006 http://www.cancercompass.com/message-board/message/all,5108,0.htm Wed, 03 Dec 2008 00:00:00 GMT Wed, 03 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi everyone, I am brand new to this board, and I am wondering if you can help me with some questions? My husband was diagnosed last Thursday (April 13) with glioblastoma grade 4. This all started on March 24 when he had a major seizure. They ran some MRI's and ctscans and determined that he had a tumor in his parietal lobe. He had surgery to remove the tumor on April 7th, and the pathology came back the following week. We have our first appointment with the oncologist tomorrow (April 17) and we'll be sure to bring a list of questions with us. What is terrifying me right now is that my husband (who really has a beautiful mind) is now unable to read certain words, gets easily confused, and even got lost in a restaurant this week trying to find the restroom. We've been in that restaurant more times than you can count, and he has always known where the restroom is. He is 44 years old, and I don't know what to expect. Will he continue to worsen and not remember certain things (his family); will he be unable to speak after a while; will he ever regain what appears to be lost right now? This all continues to feel like a nightmare in which I cannot awake from. He is the love of my life, and I can't stand the thought of life without him. He sleeps quite a bit, and has a look in his eyes that he is not completely with it. Could this cancer be spreading that quickly? Please, please, if anyone can write me, and let me know anything you may know from a similar situation, I would really appreciate it. Thank you in advance for your help. Alison Alleyal2u Sun, 16 Apr 2006 00:00:00 GMT Dear Allison, I am sorry to hear of your husband's recent diagnosis with glioblastoma multiforme. It is a scary, devastating time when you are hit with this diagnosis and trying to search out information. My dad was diagnosed with a brain tumor like your husband's on Aug. 21, 2005. He had tumor resection on Aug. 29, where the surgeon was able to remove 90% of the tumor. My dad's tumor was deep in his left temporal lobe so the surgeon had to go thru a considerable amount of healthy tissue to get to the tumor. My dad stayed in an in-patient rehabilitation unit for 10 days as he had to learn how to speak, walk, balance, complete ADLs, etc. following his surgery. This is not something any of us were prepared for ... Your husband is still recovering from major surgery so try to be patient. I know it has been difficult to have my dad be "differently abled" since his surgery. I pray that your husband will regain some of his mental capacities with more time to recover. Everyone recovers differently, and your husband's doctor may have some helpful information for both of you. My dad received 33 days of external beam radiation along with 42 days of Temodar (an oral chemotherapy medication that you might be hearing about). Temodar's dose is based on a person's body weight so doses vary from person to person. At 200 #, my dad's initial dose of Temodar was 140 mg at bedtime. He also took Compazine 30 minutes before his Temodar to keep from getting nauseated. My dad did recover some of his speech, cognitive skills, and memory thru hard work, exercises, etc. in physical therapy, occupational therapy, and in speech therapy. My dad completed radiation on Nov. 17, and in late Feb., we really noticed his being more confused, having more problems with speech. We weren't certain if it was an after effect of radiation or if it was due to swelling of his brain tissue. My dad also was brilliant prior to his surgery. If we are in a restaurant, we will be sure to wait outside the door so he can follow one of us to the table, or to the exit, etc. My dad also experienced severe vision loss as a result of his surgery so this is something we are learning to compensate for. Anyway, my dad has just completed his fifth cycle of "maintenance" chemotherapy. He takes a double dose of Temodar (for him it is 280 mg) for five days, followed by 23 days without chemotherapy. He takes Zofran 16 mg one hour before his Temodar now to keep from having problems with nausea and vomiting. It has been almost 8 months since my dad's original diagnosis. We are so thankful that he is able to be at home with my mom and his dog, Sam! I have found this message board to be very helpful when I have had questions and when I have needed extra support. There are others on this message board who have spouses with this type of tumor. You may have read some of the prior postings on the message board. I have found a new appreciation for my dad's good days and for simple things. I hope that you are able to get your questions answered at the appt. with your husband's oncologist tomorrow. I know that when we first learned about my dad's having a tumor, I looked for info everywhere. It seems as though people have different journeys with brain tumors, depending on the tumor location, size, response to chemotherapy and radiation, etc. It is hard when the future is uncertain. Be hopeful! Thinking of you. Feel free to write anytime. Take care, Rondi caring daughter Sun, 16 Apr 2006 00:00:00 GMT Hi Alison, I'm sorry to hear about your husband. My husband was dx. in January 05 with GBM too. It is such a scary thing in the beginning because you are bombarded with so much negative information and dismal prognosis. My husband also had initial confusion after surgery and radiation, but this does improve most of the time. He still has short term memory loss, but overall he functions very well. He continues to work full time and all seems relatively normal except for the five days of Temodar when he feels pretty bad. There will be many ups and downs, I call it the roller coaster ride of brain tumors. Each MRI is a scary time. We are at that point at the moment because my husband's last MRI showed some enhancement around the old tumor site. They aren't sure if it might be just radiation damage, but we are of course very concerned. He has a PET scan scheduled for this Thursday which is more precise than the MRI and hopefully we will get some answers. But once again, we are scared. I will keep you and your husband in my thoughts and prayers. Just try to stay focused on his treatment and stay as positive as you can. Take care, Patty Marmie Mon, 17 Apr 2006 00:00:00 GMT So sorry to hear about your husband. I too was diagnosed with a Glioblastoma in 2003. Is your husband being seen by a neuro-oncologist or a medical oncologist. I would strongly advise that he be seen by a neuro oncologist who works at a brain tumor center. If you go to the site: www.virtualtrials.com you can find a list of brain tumor centers. Brainy_chick Mon, 17 Apr 2006 00:00:00 GMT Hi all, Well, we had to go to the emergency room last night (April 16) because my husband had a fever of 102.5. They did a CTscan w/contrast, chest x-ray, and finally a spinal tap. Everything came back negative, but they admitted him anyway. Today they did a pulmonary embolism CTscan w/contrast. We were concerned that we would miss the appointment with the oncologist, but as it turned out, he was able to visit with us tonight at the hospital. This is what he suggests: Standard Radiation 5X a week for 7 weeks, in conjunction with Temador 7X a week for 7 weeks. Now, the big thing is, he feels with my husband's young age (44) and overall good health, it would be a good idea to go to a major cancer center and find out what clinical trials might be helpful. He suggested that we see a Dr. Michael Prados in San Francisco. I don't have my notes in front of me, but apparently he is pretty cutting edge and has some good treatments up his sleeve. I guess we have a trip to San Francisco prior to beginning the Standard Radiation. Has anyone pursued different treatment methods via clinical trials, etc.? What has been your experience? As it stands, the doctor told us that the average survival rate is 12-18 months with treatment, however, he really feels that my husband will do much better do to his overall good health. I will keep your loved ones in my prayers too. Boy, it sure is nice to have strong faith during these times. To my new message board friends, thanks for everything. I suddenly don't feel so alone anymore. Alison Alleyal2u Mon, 17 Apr 2006 00:00:00 GMT Hi Alison, My heart goes out to you. I'm new to this board too, but reading your post has prompted me to get involved b/c I could relate to so much of what you described. My husband, age 45, was also diagnosed with GBM. He is in excellent health and had NO signs whatsoever until he had a seizure at the gym when we were working out on Sun.3/19. They did a CT scan to 'rule things out' and discovered a tumor and edema in his left frontal lobe. Then they did an MRI that night and our information seemed to get worse and worse. My husband was transferred to UT Southwestern's Zale Lipshy University Hospital in Dallas the next day and had a craniotomy on Tues. 3/21. The pathology on that came back as a glioblastoma. My husband is currently on Keppra (for seizures) and Decadron (to shrink the edema). He is scheduled to begin radiation therapy AND Temodar on Mon. 4/24. The radiation will be every day for 6.5 weeks--33 sessions. We feel very good about the team of doctors we have and are going to fight this and remain as positive as we can. Not that we each haven't been sick and devistated at times, b/c we do get that way, but I have found that if I let myself get that low, it is much harder to lift myself up after that. We have three little boys--ages 7, 5 and 4 months. Suddenly life doesn't seem so safe anymore. Not that we ever thought we were TOTALLY safe, but we have taken such gooood care of ourselves! We exercise, eat healthfully and organically, drink home-purified water, are careful of the air/pollution we breathe, we don't use any form of pesticides or herbicides on our lawn or in our home, etc.... So, even with all of that caution, cancer has affected our family. Well, I guess I've started to ramble, but I imagine I will get to know you and many others here and you will get to know me. It is my hope that we can support and life each other up when the burden gets too much to bear. Where do you live? (((Hugs))) Sally in Grapevine, TX Sallysem Tue, 18 Apr 2006 00:00:00 GMT I know how scared you all are that are new to this board. I have been there. My husband was dx in January 05 and given six months to live. We are now 15 months out and he still has no regrowth, so try not to dwell on the statistics. There are alot of long term survivors out there. You can read other survivor stories at www.virtualtrials.com. It helps alot. It is always scary once you have this diagnosis, but just take things a day at a time. My husband had surgery, radiation, and now on his 13th round of Temodar. It has been a rough road as he feels terrible during the five days of 'poison' as he calls it. But he remains working full time. Please take care. Fondly, Patty Marmie Tue, 18 Apr 2006 00:00:00 GMT Allison, I am a 44 year old male with three young children that was dx on Aug 10, 2005. I had surgey on 8/17 at Columbia Presb hospital in NYC. They were able to get 100% of the GBMIV tumor from my right frontal lobe. I had experience total weakness on my leftside and was falling down. My stregth came back fairly quickly. I followed with the "standard" 6 weeks of radiation and temodar. I felt good and improved during that time until the end. Then I got pretty week and had a hard time concentrating. I have some short term memory loss and could certainly get lost on the way to the bathroom, more than anything because my mind drifts. I will tell you that I am 8 months out now and going through a new chemo routine. Everything is fairly stable and the memory has improved, except when I get tired. I do have to nap in the afternoon and this seems to help. It is a very scary time, but have faith. God works in strange ways. Enjoy the "good" days when you have them, because there will be lousy ones! Take care and Good Luck, Mark Marathonrunner Fri, 28 Apr 2006 00:00:00 GMT My name is Katie and I am 22. My mom is 42 and has GBM4 she has had it for 3 years, thats the longest her oncologist has ever seen a patient live with it. She went to Cedar Siani in california last year in Jan. they did some surgery and lengthened her prognoses. She has tried to be approved for different trials and was not approved for different reasons but I have heard very good things about Cedar Siani in california. You might look into it. She all together has had 4 surgeries to remove the cancer, but when she first was dx'ed with it she had a tumor the size of a grapefruit which had grown within 5 months of her dx. She woke up one morning and had felt really weird she said and had tried to drink her coffee. She didn't feel better. Then she tried to take a shower when she was done with the shower she didn't feel better. Then she tried to eat something and could not remember how to pour her a bowl of cereal.At that time she knew something was not right. so she went to her sister in laws house next door and told her these two words...." help!" and when laura askedher whats wrong mom could only say " I don't know" she could not remember 911 or any other number for that matter. they then rushed her to the ER and they found the tumor. They then tried all the regular chemos and such and none of them worked so they place a bag full of radiation in her brain where the tumor site was and that didn't help much.so now she is doing a trial form of chemo which trials are the only choices she has. But like i said 3 years and still fighting tooth and nail. Shes a trooper. I just try to enjoy the time I still have left with her and try not to talk about the cancer if I don't have to around her cause it makes me cry and her too. In fact I just got married last sat. april 22nd and she was here for it and did all of the wedding things a mom does.weak and tried it didn't matter. She looks like a different person still my mom inside but not on the outside. I love my mom so much and it kills me that she is terminal. we just try to make the best of it. My heart breaks everyday losing her is better then her being with me and suffering all the time. I keep letting her know that when she wants to let go i will be there with her every step of the way and that I am ok with her going to a better place. I don't want to be selfish and keep here fighting if she is tired and hurting. I will keep your family in my prayers, and I hope they come up with a cure soon. Katiegurl10 Fri, 28 Apr 2006 00:00:00 GMT