Gbm Diagnoised in Jan/feb 2006

Hi,I am looking to hear from anyone who has a family member that was diagnoised around the first othe year (06) to see how their journey is gong. My mother was diagnoised in Feb. and is 72 years old, however she is not he typical 72 year-old, very vibrant and active. This disease has really taken a toll. Eva Lyn

Hi My Mom was diag. oct.o5.She was responding to temodar but saddly is not anymore.She is so important to me I can`t possibly let her go.I do however need to know when the time is right to stop fighting.This is so horrible.My Mom is no longer walking and mostly not saying too much she seems comfortable and was happy until the docs.told her there was no hope,the tumor was out of control.I`m not sure she needed to hear that.It was the first time I saw her cry about this it broke my heart.I thought she didn`t really understand what was going on.But she seems to be understanding more than i thought.When people don`t answer you assume they don`t understand,i guess i was wrong.I should go now how is your Mom? Susan P.S My Mom is 73

My mother was diagnosed in March with this horrendous type of cancer. She too was a healthy, very active, hard working 77 year old. Her symptoms were mild, just some slight confusion and headache and we thought she suffered a mild stroke. After MRIs etc, she was referred to a neurologist who told her and us that she had a growth-wouldn't call it a tumor-and that she would have it removed and we would have our mom back the way she was. The neurologist said she was "90% sure it was a benign growth and it would be taken out and she would be back to the way she was before the symptoms"!!! WRONG! After her surgery, we were given the devastating news it was a GBM Stage 4 and given the 12 months survival. She almost finished the radiation treatments and temodar but had to quit because of her extremely low blood counts. This was sometime in May, she began her treatment the day after their 56th wedding anniversary. After her treatments stopped we were told she had maybe 6 months, check into hospice. She has had countless platelet transfusions and has just had her 9th blood transfusion and we were told this would probably continue for the rest of her days. She has lost use of her left hand and is unsteady on her feet and is confused some of the time. She's had some pretty rough days and some not-so-bad days. She is no longer taking any treatments, will not go through any more surgery/chemo/radiation. That is her request and with her current condition we know she could not handle it anyway. My dad takes care of her and we are a close family and all pitch in. She is not mom like she was. I wish we wouldn't have been given that false hope to begin with. We know what the outcome of this will be and we try to stay as positive for her as we can. But it's difficult. And you are correct that it takes its toll. We were told that her age is against her. She had to travel 120 miles round-trip for radiation treatments and she did wonderful, but we didn't realize how difficult it was for her. We are actually quite thankful that she has done as well as she has, but it seems every day gets a little worse. She also handled the surgery well but was released 2 1/2 days after surgery and after a week at home developed blood clots in both lungs and legs and spent 9 days in the hospital. It hasn't been an easy road by any means. But a strong support sytem is helpful, we her family are that for her and each other. What were your mom's symptoms and how is she doing now? Hang in there and don't give up hope! MA

Thank you for your responses. This is unbelieveable...this disease. I can tell from your e-mails how very devasting this is to your families as well. My mother is 72, and looked 40. She and I own a company together. Even though we are 3 hours apart we work together and talk on a dialy basis. I took a trip with her last Nov '05. It was an odd trip as she semed to be forgetting things and was just difficlut to be with. I told my husband that was the last trip I would go in with her, as she nearly drove me crazy. Little did I know it would indeed be my last trip with her. Shortly after that things became gradually worse as she complained of severe headaches and was told it was probably a sirus infection. Then she lost her gait and veered to the left when shuffling, the Dr. finally ordered an MRI (Feb. 06)and with that we were off to the races, surgery, radiation, chemo and an experiemntal drug through a clinical trial. Radation went incrediably well and our hopes were boosted thinking we had conquered the worst, but the worst was yet to come. My mother has constantly lost strength, had a blood clot in her lung, and extremely low blood platelet counts that have resulted in the ceasing of her chemo treatments. Mom still thinks she is going to get well. I don't know how it will hit her when the reality sets in. She is my best friend, I am heart broken and devasted. She doesn't get around much at all, limited walking with the aid of a walker. She is so weak and unable to do much at all for herself. MRI's have been clear, but Thursdday we have another MRI schduled. This is so hard, I really don't know what to expect next. Have your Dr.'s given you a specific time frame? How are your mother's dealing with the devastation of GBM? I want you to know that you and your families are in my prayers. Please post your updates, I really do care about you. Eva Lyn in GA

My Mom was told by the doctors on friday that there was nothing more they could do the tumor is out of control.I really felt for the last while she was to confused to really understand the extent of her illness.But she broke down and cried in the doctors office.I was heartbroken and surprised as she has not shown any emotion since diag. a year ago.I now wonder if she has been keeping her worries to herself to spare me or did she just have amoment of clarity.She usually forgets things 10 min. after they happen but she does not seem to be forgetting this.I think they took away all hope and now she is sad and tired.I don`t know what the point of telling her was.She is not capable of getting her affairs in order or even communicating her feelings all the news did is make her give up.I`m telling her were going to beat this.We are doing alot of holistic stuff so I try to tell her that will work but i don`t think she is buying it.And i don`t think i am either.I have been so busy trying to research this and take care of her,she lives with us now.I also have 3 kids 1 3 and 11.I really don`t think I have fully processed this myself.I guess i should start organizing a funeral and clearing out my moms house.This is all so devastating and i know the worst is yet to come.i`m not sure i can handle it.I`m so sad the 1 and 3yr old won`t really remember my mom.She was so crazy about them and took such good care of them.Alwys there when they were sick she held my hand when they came into this world.God how can I go on without her.I have to go i can barely see the keyboard thru the tears.Keep in touch.i pray your journey is a peaceful one. Susan

I know this is so hard for you, but clearing out your mom's house is premature. Focus on today only, there will be enough time later for all that other stuff. I am so sad for your children as the relationship with a grandmother is so special, but I am sure your children will remember her through you, through your love, actions, and the reflection they see in your eyes. Maybe you could get a favorite photo of them with their grandmother and put it in a special photo ornament that can be hung on the Christmas tree each year. As they gorw up and you are decorating the tree with your children each year, relate a "story" about their grandmother. Then as the years go by and they decorate their own tree they will recall your stories about their grandmother. Just an idea. Please hang in there and know that the comfort you need will come. Enjoy today, just for today. Remember your children are learning from you how to deal with grief. Demostrate for them how you want them to handle the grief that is sure to come their way someday. God Bless! I feel your pain. EL

Hi All, This all just sounds as if we are all talking about the same person. My mom is progressively getting weaker each day, she can't see much at all to read, watch TV or do anything. I think this is the most frustrating thing to her, she was a teacher and was such a bright, sharp, smart woman. Now she forgets things she asked 5 minutes earlier, gets things all mixed together and mostly just sits in her recliner or sleeps. She has had so many platelet transfusions, I can't keep track. She had her 10th blood transfusion since this whole nightmare began. I too struggle with thoughts of what is yet to come and that is the most frightening thing to me. We don't know what to expect. Do any of you think terrible thoughts like I wish the Good Lord would just take her in her sleep so she could quit suffering and be at peace? She is not in any physical pain but you can see this thing has just taken it's toll. It's like we've lost our mom the day we found out about this. She hasn't been the same since. It's so hard. We haven't been given a time frame, we discussed this with her family physician who is wonderful and said he isn't God and can't say when, how, or where. I guess all of us just want some reassurance that our moms are not going to have to go through some horrendous ordeal just to die. That's what I want, someone to reassure me that it's not going to be awful for her. But I don't think anyone can say that, can they? I guess we all just have to rely on God to take care of them. I am so surprised at how many good people are having to deal with this. Please know that I pray for all of you, your mother's and families each and every night! We have no choice but to try to hang in there.

As you all may have noticed, I posted that my mother died on 9/20. I want you to know that we were told originally, by most of her doctors that she would just go to sleep and slip into a coma, would probably not have any pain, and peacefully expire. This would have been the perfect picture and I hear that it occasionally happens this way, however, in our case, the final days did not follow the perfect expectation and timeline. My mom experienced what the neurosurgeon termed "emotional pain". He described it to be similar to mourning or grief. It lasted for about 7-8 days before she finally slept for about 16 hours straight and then slipped into a coma. Those 7-8 days were miserable. I mentioned on another post, that each of you should make certain to get clear instructions from hospice as to how to administer morphine for these symptoms. We were not told what to expect and how to treat what happened. I'm a pharmacist, and I feel terrible that I didn't know what to do. It was absolutely heartbreaking. The problem with these brain tumors, the receptors in the brain are not functioning properly, so it takes much more frequent dosing and higher doses to help the patient get out of the agony and misery. My mom was trembling, asking me to help her, calling out for her mom and her dad, her sisters....childhood memories, wanting to "go", having a sense of urgency. Of course, I have since said that if I had been in that condition at the end of my life, I would have wanted my mom too. Interestingly, my mom told me about 3-4 days before all of this started that her legs were getting restless. I wish I had known that that was the first sign that we were nearing the end stages. We were still using the bedside commode at that point, taking her to the dining room in the wheelchair, conversing with her and watching television together. She just hit the "slide" and it snowballed in 2 weeks time. It was absolutely pitiful, and nothing can prepare you for it. I just pray that each of you can avoid it, or at the first signs, be prepared for exactly what is necessary to do to help your moms. At this point, they are in such misery, emotionally, that they can't stand what is happening to them. They want to sleep, and that is best for them if you can get them to sleep. We just went through this, and it is all fresh, so if I can help, please ask. I hope to someday forget all this, but right now, I constantly relive it over and over in my mind. I will tell you, that when the coma is over and death comes, you will be heartbroken with sorrow, but you will also feel thankful that your mom isn't suffering anymore. It was and still is a strange feeling. It's been 10 days, and I am really beginning to miss her so much. I was told that a week or so later, it would sink in, and that's about right. I'm beginning to grieve my own loss of her, rather than her loss of ability and life. Yes, you all hang in there, and continue to be with your moms and offer emotional support as much as you can. You will be glad that you were there for her.

My dad was diagnosed in late April 06. He was an active man who had recently had a thorough physical at an inpatient facility and was told that he was in perfect health following a review of all his systems. Following a severe headache and unusual behavior he was taken to the ER and eventually we were told that he had a tumor in the right frontal lobe which was operated on immediately. The pathology report revealed that it was GBM. He was a trooper and went for radiation and took temodar hoping to "beat" this thing. He was 79 years old at the time and the doc did not recommend rehab which he could have used as he had lost a little strength. Several weeks after surgery he developed blood clots in the leg which required hospitalization and bed rest and came home weaker still. After 1 or 2 weeks he fainted in the shower and ended up in the hospital again on bed rest and finally was sent to rehab where he did quite well and was almost back to normal except for the strange expression that he wore which I later figured out was from the dilantin (anti-seizure). He and my mom went to Italy for one month. Just prior to their departure he had an MRI and was told that there was regrowth and that it should be operated on again upon their return. He had surgery 9/5/06 and seemed great up to the 2nd day after the surgery and then he went to sleep. He woke up several times during the 2 weeks following surgery but those times became less and less frequent until he finally slipped into a coma and he passed away on Halloween. They think that he had a staph infection and even with antibiotics he was unable to fight it. He turned 80 on 10/12/06. I miss him terribly. Six months from diagnosis he was gone. My heart goes out to you as this is a terrible disease. I will add you and your mom to my prayers at night. Rose

My dad was diagnosed with GBM in April 2006. I share your pain and concern. I too had the same concerns and he too was different once he had surgery and began treatments but we still loved him and he was still ours and we desperately wanted to take care of him. My dad just lost his fight with GBM on October 31, 2006. There was never any indication that he was in pain and he passed away at 6AM peacefully. I am angry though because My mom, brothers and myself spent so much time by his side at the nursing home and he had to die alone. It was 6 months from diagnosis to expiration although he had complications from a second surgery on 9/5/06. I am so sorry for you. God bless you and your mom. I will pray for you both. Rose