One patient with glioblastoma still alive nine years later
by Bunkydarl on Tue May 08, 2007 12:00 AM
Hi, I am new to this board and so very glad to have found it. My dad was diagnosed 18 days ago with Glioblastoma IV, he is 64. Everything happened so suddenly. First his vision then his memory, we never thought for one minute it would be something like this.
He was operated on 14 days ago and everything went very well. The tumor did damage before the operation. He suffers from short term memory loss and a bit of difficulty in walking. He is NOT the same man that he was 4 weeks ago. It is very sad. He seems to just be "existing". He talks about nothing else besides the same 5 things day in and day out, and forgets what has been said to him already. He does not seem to actually have a grasp of what is "really" going on.
Thursday he will begin Radiation and Tremodar....what will I be dealing with? He lives alone, will I need to hire a health care aid? I myself am an only child with a husband and 3 young children already depending on me. I need to know the cold hard facts about what lies ahead for "me" so that I can plan for my family and for my father. Right now I have an Aunt that has been my right arm, but otherwise that is pretty much it. Any information on how this treatment is going to effect us would be greatly appreciated.
Sorry if this post seems to bounce around alittle bit...this is just ALOT to get a handle on in such a short amount of time.
Thank you in advance for all of your support!
by Evalyn on Tue May 08, 2007 12:00 AM
by Tanrat on Wed May 09, 2007 12:00 AM
You message touched home with me because I am also an only child. My mom was dx. Oct 18-06. I lost my mom Feb. 8. I was lucky because my parents live 5 minutes away from me. After surgery she went into rehab. Me and my dad were there most of the time except at night we did go home. Although there was one night they called us back because she wanted to leave. My dad ended up sleeping on a chair next to her that night. The next morning she did not remember anything that went on. They worked with her alot, but I was the one who taught her how to eat by herself. She did not have the skills and the strength to hold a spoon or get it to her mouth. When we brought her home, she needed help with almost everything. My dad had to be the one to take care of her medications. She would of never new what to take or when to take them. One day she was napping on the sofa. She got up and took off all of her clothes and was trying to go outside. My dad was in the other room so he caught her before she got outside. I'm sorry to go on so long, I just want you to understand the things that some patients do. You never know what is going to happen next. They could only remove 95%. of the tumor. She did have 30 tx's of radiation. It wipped her out. For some reason she would be so tired after. She usually slept the rest of the day. She was on temodar. My dad kept her on schedule so that she took the anti-nausa pill I think it was ahalf hour before she took the temodar. The temodar she took right before she went to bed. It also seemed to make her tired. She had a mri in november. It showed no regrowth. She had one the end of february and it had grown larger than before and had crossed the mid-line. We pretty much could not leave her home by herself at anytime. She was never able to drive after the dx. I am sorry if I am bring you down. It could go completely different for you and with all my heart I hope it does. Take the time to be with your dad. I will never regret all the time I sat with her during this monster of an illness. Please contact me anytime you need to vent. My name is Jolee and my screen name is tanrat.
by Bunkydarl on Thu May 10, 2007 12:00 AM
Thank you for your response. What a horrible time you had with your mom, I am so sorry for you. This disease is horrible, I just can't seem to get a grasp on it. I lost my mom last year and thought that was the end of the world, now this...yikes!!! Our lives have been turned upside down in a matter of weeks, it just makes no sense.
I appreciate you being so candid. I really need to be prepared for what may be ahead of us. Especially with the school year coming to a close, I will need help for my children as well. I just feel "lost". I can only imagine how my dad is feeling. He does have very good spirits, so hopefully this will help!
Any tips, advice....anything.....I greatly appreciate. So thank you very much!
by Tanrat on Thu May 10, 2007 12:00 AM
I am so happy you did not take what I said the wrong way. Everyone respondes differently. I hope your's goes alot differently. I know very much the feeling you spoke about, feeling lost. That is me so many times. Do not forget anytime you need to vent I will alway listen. Try to keep your spirts up for you and your family.
Take care and keep us informed
by Ajoyrenewed on Fri May 11, 2007 12:00 AM
On 5/8/2007 Bunkydarl wrote:Hi, I am new to this board and so very glad to have found it. My dad was diagnosed 18 days ago with Glioblastoma IV, he is 64. Everything happened so suddenly. First his vision then his memory, we never thought for one minute it would be something like this.He was operated on 14 days ago and everything went very well. The tumor did damage before the operation. He suffers from short term memory loss and a bit of difficulty in walking. He is NOT the same man that he was 4 weeks ago. It is very sad. He seems to just be "existing". He talks about nothing else besides the same 5 things day in and day out, and forgets what has been said to him already. He does not seem to actually have a grasp of what is "really" going on.Thursday he will begin Radiation and Tremodar....what will I be dealing with? He lives alone, will I need to hire a health care aid? I myself am an only child with a husband and 3 young children already depending on me. I need to know the cold hard facts about what lies ahead for "me" so that I can plan for my family and for my father. Right now I have an Aunt that has been my right arm, but otherwise that is pretty much it. Any information on how this treatment is going to effect us would be greatly appreciated.Sorry if this post seems to bounce around alittle bit...this is just ALOT to get a handle on in such a short amount of time.Thank you in advance for all of your support!
Hi! We are right in the middle of the same difficult situation. My Mom is 77 years old and two weeks ago, she had brain surgery and the pathology report came back stage IV GBM. Today I told a nurse that what we are experiencing is almost inconceivable. When we left my mom's home to go for the "debulking" or biopsy, she was having balance problems, some memory problems, but still very much our mother in every sense. WE never gave any thought to the fact that Mom would never go home. This morning, I have been to the nursing facility where she is lucid, peaceful and in active hospice care. HOwever, she is still active enough to try and get out of bed and has fallen 2 times this week. When I arrived at 2 a.m. to look in on her, she had a huge "goose-egg" on her forehead. I called hospice and they arrived to check her out. The doctor's told us that two weeks out from the surgery we would discuss treatment and what I heard "beneath" those statements, was "If she's still alive". At this stage of the journey, treatments are NOT an option. MOm is talking about death, all the time and "looking for the light". She is so sweet and tender with everyone telling us good-bye messages and simply holding our hands and talking about going to heaven. Mom is on heavy drugs to abate any pain and we are staying with her most of the time. I had been gone only 2 hours to take a little nap when she tried to walk and fell.
So, my prayers and my best wishes are with you. I am beginning to see clearly that the comments about every patient being different is so true and that time lines arevery useless. One of the biggest dilineations that the primary caregiver must make is whether to stay on a curative track for the patient or to take a comfort track. This heinous disease gave us NO choice and the comfort care was warranted and so necessary for my mom's dignity and the respect we have for her. How difficult it was to make that decision and yet so simple and dignified, as well.
WE are walking MOM home and it is good.
by Chari on Fri May 11, 2007 12:00 AM
I too am glad I found this site. My husband was diagnosed with Glioblastoma Multiforme grade 4 in Feb 2007. He had surgery and had about 95% of the tumor removed on Mar 21st. He is taking temodar for 42 days and radiation for 6 weeks. The surgeon gave him 10 months of course he said we should ask the oncologist. The oncologist does not want to give him a term, said that they have a lot of patients who've been with them for 2,3 6 years. So I am hopeful and positive with his recovery. He has the usual side effects of the treatements: mouth sore, short term memory loss, he walks with baby steps. He has recently become incontinent, I have yet to ask the doctors why this is. He fell off the bed last night and I didn't hear him at all. I used to wake up at the slightest movement..... Then he said he was hungry at 3 am. He said a prayer like this: thank you for another day to live, thank you for my wife, help me show her how much I love her.........
God bless everyone, I'm glad I found you.
by Vermont on Fri May 11, 2007 12:00 AM
I would love to help with any questions that you have. I lost my Mom almost 2 years ago to kidney cancer and my Dad was diagnosed in Dec. '06 with glioblastoma...what is going on here?!?!!? My Dad completed 6 weeks of Temodar and Radiation in February, unsuccessfully and is now on Avastin & CPT-11 every 2 weeks. My Dad's tumor was inoperable. My husband and I have a 3 year old and I am 8 months pregnant with our second. When it rains, it pours....
If you have access to home health caregivers and/or visiting nurses take the help. Chances are your Dad will need someone to be with him all the time at least for the end of treatment and a couple of weeks following while he recouperates. Ask me specific questions, I am happy to help any way that I can. Gather your strength and take one moment at a time.
Carrie from Vermont
by Bunkydarl on Sat May 12, 2007 12:00 AM
by Karenjeff on Sun May 13, 2007 12:00 AM
Hi there, I know exactly how you feel and what great support this site is in terms of feeling that you're not alone and that people outside your circle understand more clearly than sometimes the people close to you.
I care for my 75yo mum who was dx 8 weeks ago with 3 x inoperable GIV GBMs. Her symptoms are exactly like your dad's. Saying the same five things all day, can hardly walk etc. We have only had ten treatments of radiation and she is not interested in having chemo. The doctors have been supportive of her decision. I am purely providing comfort and protection from herself, i.e. wandering, falling, eating too much sugar etc. A couple of nights ago she managed to totter out of bed and get out of the house (still don't know how she found an un-deadlocked door when she can't find the toilet) and got lost in the back yard. She was covered in spider webs and had pulled the fly wires off the windows...it was lucky I woke up.
I have three children, but unlike you they are older and can help me, but they have school and work and their lives to a certain extent and I only use them when I need a break or need two sets of hands...they are great company for me though. My husband just doesn't get it...I don't know whether the whole thing freaks him out or what but he is just going on like its business as usual and worrying about his stuff he needs to do....so he is like another child really...it tires me out even more! Anyway enough about me. My advise to you is take each moment as it comes and train your mind not to think too hard about anything, because we have a job to do and if we can fake it, we just might make it, 'cos the reality is a bit too hard.
Keep us posted.
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