CancerCompass message board discussion started by Loriann on 5/30/2006 http://www.cancercompass.com/message-board/message/all,5490,0.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/ My husband was diagnosed with GBM IV August of 2004. We have gone through the entire gammit of treatment(craniotomy, radiation, chemo, etc.) My husband has new regrowth, and is home on hospice. We have been fighting this fight for 22 months and I would dearly love to talk to someone who has gone thru this or is currently going thru the same thing. I would like to talk to someone who knows what this will look like at the end. We have 3 late teen & young adult children still in the home and this has been an extremely difficult slow progression for all of us. If you are the caregiver of a husband or wife I would love to talk to you. Loriann Tue, 30 May 2006 00:00:00 GMT Lori A, I am not a spouse, but a person who is battling GBM. I know you need a different prospective at this time. I found this website and although I am not at that stage, have saved it for when I am. Hopefully it will help or give you someone to talk to who has been there... http://brainhospice.com/ --- Julie Jan42006 Tue, 30 May 2006 00:00:00 GMT Hi Julie, I am sorry to hear that you are the one with the cancer. I am looking to talk to someone for support, but if you would like to talk to someone about what you are experiencing, I would be glad to talk with you. I have been going thru this for 22 months with my husband. If i can help you in some way, that would be great. Blessings to you, Lori Loriann Wed, 31 May 2006 00:00:00 GMT Dear Lori A, I am also the spouse of a husband with gbm. My husband was just diagnosed in 5/05. We are still on the temodar/tarceva regimine. He also has had a resection. I am so frightened that his tumor is growing back. He has bad headaches. His right side is getting weak. I also would love to speak with someone. The brainhospice website is fantastic. It has given me so much information. My husband is experiencing aggitation. But with all the drugs who wouldn't get aggitated. We also have 3 daughters. One still lives with us. I am here if you need me. Sincerely, John's wife Aka Bobbie Johns Wife Wed, 31 May 2006 00:00:00 GMT Dear Lorriann, My father just passed away a month ago from GBM 4. He was 76 and had battle the cancer for 7 months. He had the brain tumor removed, radiation, Chemo for 6 weeks. Then he started the treatment at home the end of Jan. with the Temodar. In Feb he was back in the hospital with thrush and aspiration pneomonia. We finally got the results on his second MRI in March and the cancer had spread to the front of his brain. This was the result of brain fluid that was present on the Jan. MRI but no one seemed concerned. The NeroOnco. at Barrows said it was not the other DR's fault and we would have just prolonged the inevitable if the fluid had been removed. Within a week and 2 days my Dad had passed on after the visit to Barrows.Hospice came and my Mom hired a private nurse at night so she could get some sleep as he moaned alot his last week on earth. They promised that he was not in pain but it is just a change in your body shutting down. His last nite on earth we did give him oral Morphin and larazepan every hour to ease any pain. We had his hopital bed in the living room and we talked and had music going most of the time. It is very hard as you do not have your love one with you that last week as they really have no knowledge of what is going on. Do hire help as they will be in diapers and not able to feed themselves. On Wed Dad stopped eating so he was just on oxygen and passed away on Sat. morn. I guess we are lucky that his was so quick. We wanted more time with Dad but it just was not meant to be. I am so sorry to hear about your husband. Pray alot and kiss and hug your husband.There are books from Hospice to explain the process. I am also going to get the book "We Are Their Heaven" Please feel free to call me but I do not think I can post my number on this site. Let me know where I can post my number for you. I know from experience that this is a nightmare for you and your family.It seems surreal and time passes fast and slow.... I never had heard of this type of primary brain cancer.The loss is so hard because you have been so involved in his care,DR's,caring and more. After Dad passed I started playing MarJong 1 or 2 nites a week with a new group of people that did not know my Dad and that has been good. Just alittle change.Keep your sprirts up and your family close. I hope we can talk soon. All my prayers, Jodee Jodee Wed, 31 May 2006 00:00:00 GMT I am caring for my darling husband who has Grade III (and possibly Grade IV) glioma in the basal ganglia/thalmus area of his brain discovered in September '05. It was inoperable and he lost a great deal of right side mobility and mental functions in a very short period of time before the biopsy was done and treatment started. He has concluded radiation and 42 days of Temodar and will start his fourth round of 5 day high-dose temodar. Tumor appears to be inactive but radiation necrosis has continued to weaken him. Our children and grandchildren all live far away and so the caregiving has fallen completely on my shoulders except for their short visits. We am fortunate to have someone to help during the week so I can get out and run errands, but as time goes on we are becoming more isolated as most people simply don't know what to do. Our local brain cancer support group wasn't helpful to him as his symptoms were far worse. Reading notes from others who know exactly what our life has become is somehow comforting. Sue59 Sue59 Sun, 04 Jun 2006 00:00:00 GMT Hi, Lori, I'm so sorry to hear about your husband. My father went through exactly this and we lost him late last year. He survived for approximately 30 months after his initial diagnosis. I'm glad that you have Hospice in your home--they made such a difference with Dad. As for what it looks like at the end, the last week, 10 days of his life he simply started sleeping much more--we weren't sure if he knew that we were there or not. Hospice had him on morphine and assured us that he was not in any pain. The last few hours of his life he started laboring with his breathing a bit, but, all in all, he passed away peacefully. This is a terrible disease that takes such a toll on loved ones. I don't know how you feel about the subject, but I started seeing a psychiatrist when Dad was diagnosed and have continued seeing one to this day--it has helped me so much--I can't recommend it enough. I'm so sorry that you have had to go through this and I will keep you in my thoughts and prayers. Lizvj Mon, 05 Jun 2006 00:00:00 GMT Thank you for your kind words & the information about your father. this is the most draining experience I have been thru. My husband has been in the hospital for 9 days. He went in for headaches & seizures. He has lost some eye sight & is much weaker on the left side. He is such a fighter, they keep saying this is it & he rallies around & amazes all of us. It is so hard to watch this slow process of decline. blessings to you and your family, I am sure it must be hard to have lost your father. Loriann Loriann Tue, 13 Jun 2006 00:00:00 GMT Hi Sue, Thank you for responding to my posting. It is very comforting to me as well to talk to someone else that is going thru the same thing. My husband has gone thru all the treatment available, and now his tumor is growing again. He is in the hospital right now for headaches & seizures. He lost some eye sight & can not walk. His mobility was getting bad before, but with all the siezures, he is so weak on the left & the brain doesn't communicate with the body very well. My husband has been a health nut his whole life & still looks great! So hard to watch such a strong independant man be reduced to this. I also have felt isolated even though I have some family around to help. But, the person that I really want comfort from can't do that right now. I am very concerned for long term care as he gets worse as Hospice only comes for a short time each day, and if he is not mobile it will be very difficult to take care of him. I will keep you in my prayers & would love to hear back from you. PS my husband is 59. Loriann Loriann Tue, 13 Jun 2006 00:00:00 GMT Hi Bobbie, How is your husband feeling? My husband also experience agitation & he takes Zoloft & if needed adivan. that has really helped him alot. I hope that his treatment is going well, and you will see good success. Keep in touch. Loriann Loriann Tue, 13 Jun 2006 00:00:00 GMT Hi Loriann Thank you for your kind note. Your comment about hospice assistance concerns me and I am trying to get in touch with our insurance company regarding our hospice coverage. We're not there yet but I know the time is coming and, as I mentioned, our family doesn't live nearby. My husband is still able to walk with a walker around the house but requires assistance with just about everything else. I have someone helping me Monday to Friday for 5 or 6 hours a day, for which I am deeply grateful, but once he's not this mobile I don't know what I'll do (he's still 200 lbs and also looking pretty great!) He is considered "stable," although radiation necrosis has set in and he gets a little weaker week by week. You asked about his age -- he just turned 61 and was also athletic, active, and a very intelligent man with a multitude of interests. He has made the decision to not do any more treatments other than the 5/28 Temador routine he's on now when the tumor becomes active, and as much as I want to keep him with me I respect and support his decision. He's lost so much of his quality of life that his only concern now is that when it's time to depart, he wants it to be fast and painless. That's all he talks about with the doctor these days! From what we're told and what I've read, this probably won't take very long because of where the cancer is located in his brain. Have you brought your husband home yet? Our plan is to keep my husband at home but I don't know I would react to a sudden crisis. Stay strong, Sue Sue59 Tue, 13 Jun 2006 00:00:00 GMT Hi Sue, My husband has been home with hospice since the end of february. Unfortunately 3 weeks ago he went to the hospital for headache & seizure control & now I had to place him the Veterans transition care facility. He can not walk or stand on his own, and has become incontenent. I was unable to care for him at home with the level of care he needs now. He is still talking and eating, but he is extremely weak & so easily confused. It is breaking my heart to have to place him in that faciity. All of us want him home with us. I am going to try to bring him home at the end if possible. The hardest part is that nobody but God knows how long this can continue. It is extremely hard on him to be like this & for all of us who love him so much to watch. The VA is not a compassionent as Hospice or as good at keeping Steve comfortable. I spend as much time with him as possible, but also have to work. I hope treatment is going well for your husband & I am glad you have some help. It is too difficult to try to do everything on your own. Blessings to you & keep in touch. PS. Sorry my message seems to be all sad news! Lori Loriann Mon, 19 Jun 2006 00:00:00 GMT Please don't worry about telling me about your news, I wouldn't be corresponding if all I wanted to hear was good news. You are obviously very loving and doing the best you can, and those of us who are caregivers to loved ones with this disease know how emotionally and physically consuming that is. You cannot ask more of yourself. Sue Sue59 Wed, 21 Jun 2006 00:00:00 GMT