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Old 06-24-2005, 06:24 PM   #16
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Re: very fast type brain cancer...need support

Hi Ebullion - Just wanted to check to see how your aunt and your family have been doing - please let me know. Thanks.....take care....Scarlett

 
Old 06-30-2005, 08:04 AM   #17
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Re: very fast type brain cancer...need support

Hi Scarlett, and thanks for asking. Except for losing more mobility in her legs, my aunt is about like she was a couple of weeks ago. My dear mother is still there caring for her. It is getting harder to get auntie on her bedside commode and she absolutely doesn't want to wear incontinence panties. She took one radiation treatment. It was getting very difficult to transport her and this would have to be done every day, so my mother, my other aunt, and myself had a "conference" and decided against any more treatments. I visited and spoke with the oncologist and he said that if he were in the same position, he'd make the same decision. He said the treatments would do very little good at this point, and the side effects would only make things worse. My aunt still doesn't realize how bad her situation is. And if she did know, I feel she would lose her will to live and would go downhill alot faster. We are trying to keep her comfortable and satisfied as long as we can. Hospice will help; all they need is the word from us, but we want to try to make it without them for now. I know alot of people would disagree with the way we are handling everything, but we are honestly and prayerfully trying to do what we feel is best. This is a very unique situation and we are trying to take all things into consideration, even the wellbeing of my 90 year old grandmother who is in the home also. I've heard it said not to ask God for patience because trouble will come to teach it to you. So we don't ask for patience but just grace and strength to make it from one day to the next.
Another thing I will add here....my aunt is talking constantly, even in her sleep. The doctor said it is due to the tumor itself and not any of her meds. She doesn't remember the next morning how much she was up during the night or anything. She thinks she slept good all night long. Yesterday, I spoke with her doctor and he prescribed something to help her sleep better. I haven't spoken with my mother yet this morning to see if things were better last night. But my mom had been being exhausted by morning. Hopefully, things went better last night.
Sorry if I rambled on too much. Feel free to write back if you want to. By the way, it has been 4 and 1/2 weeks since her diagnosis, when the doctor said he would give her 6 weeks to live. I think she may outdo that, considering her condition hasn't deteriorated much in the last couple of weeks.

 
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Old 06-30-2005, 09:33 AM   #18
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Re: very fast type brain cancer...need support

Ebullin - please feel free to ramble any time you feel like it! That's what this board is here for. My dad lost his ability to speak which is why my mother rushed him to the hospital - she thought he had had a stroke. He could talk a little bit in the beginning but then that faded away and he would squeeze your hand to answer you. It was difficult to see this man who had never been sick and worked 24/7 all of his life go downhill so fast. It's an aggressive cancer - no doubt!

I applaud you and your family for making what I think, is the right decision about the treatments. I realized with my dad, as did the rest of the family, no matter what we did the end result would be the same and QUALITY of life IS more important than QUANTITY! Even when my dad said no to any more treatments the doctor probably would have let us override his decision but he, too, agreed. I know it's a very difficult decision to make but as my dad always said - doing the right thing in a tough situation is never easy.

Hope today is a good day for you and your family. Take Care and God Bless! Scarlett

 
Old 07-13-2005, 08:17 AM   #19
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Re: very fast type brain cancer...need support

ebullin and Scarlett--
I have read through your posts and wanted to reply to you both.

My father has brain cancer (found out a week ago). The neurosurgeon doesn't have the final pathology, but he thinks it's either grade III or grade IV GBM. My mom, my sisters and I are just STUPEFIED. My dad is 65 and aside from hypothyroidism and high cholesterol, has NO health problems. He commutes to NYC every day for his job, he walks and rides a bike with my mom...he just started enjoying his life after being so SERIOUS all the time. After his father (my grandfather) died in 2000, he decided to get something fun out of life. Now he has this tumor. Talk about a kick in the pants.

He's had symptoms for only about a month. Vision disturbances mostly. Then came the gait problems. Now, one week since the biopsy, he's still stumbling and can't see well (the decadron is helping the edema, but *slowly*), and he rambles a bit and repeats himself. He's also telling us a million stories from his life and apologizing for stuff over and over. He naps during the day and gets nauseous if he stands too long. We're taking it in stride, but until we find out what our course of action will be, we're just living one day at a time.

The doctor did tell us what I've read in your posts. That my dad will just get progressively more withdrawn until he passes. He will essentially fade away. This makes me so sad. But I have to try to keep it together for both my mom and my dad...

If you don't mind, I would like to keep posting with you--It's hard to find anyone who truly understands what is going on.

My dad said the other day he wants to be like Lance Armstrong and beat cancer. We told him he can do whatever he wants if he can put his mind to it. Sadly, I don't think it will turn out as well for him. We have a long haul ahead of us....

MLWC

 
Old 07-13-2005, 09:08 AM   #20
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Re: very fast type brain cancer...need support

MLWC - I'm so sorry to hear of your dad's diagnosis. It's pretty devastating when you hear about this cancer (or any cancer for that matter). Please feel free to post - that's what the board is here for. I will keep you and your family in my prayers. Take Care...Scarlett

 
Old 07-13-2005, 09:33 PM   #21
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Re: very fast type brain cancer...need support

I really sympathize with you all. As I said, my Mom had GBM. Her first treatment consisted of external radiation. That had huge positive effect for a year. Then she had interstitial radiotherapy (high dose radiation left in catheters inserted into the tumor). This helped for a month or two, but her faculties (physical and mental) deteriorated rapidly after this treatment.

Leanna

 
Old 07-18-2005, 08:01 PM   #22
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Re: very fast type brain cancer...need support

Hi my mother was recently diagnosed with GMB. She is already sleeping 23 out of 24 hours a day and it seems to be progressing so fast. She is having problems holding her bodily functions. Can someone please let me know what to expect as far as symptoms. They just put her on pills to reduce the swelling of the brain, but it is all over the left side crossing into the right and obviously inoperable and we do not want to do a biopsy as my father does not want to cause her any pain at all. We are looking into radiation, can they do that at home, she really can't walk. Any help would be greatly appreciated. Thanks Jane

 
Old 07-18-2005, 08:01 PM   #23
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Re: very fast type brain cancer...need support

Hi my mother was recently diagnosed with GMB. She is already sleeping 23 out of 24 hours a day and it seems to be progressing so fast. She is having problems holding her bodily functions. Can someone please let me know what to expect as far as symptoms. They just put her on pills to reduce the swelling of the brain, but it is all over the left side crossing into the right and obviously inoperable and we do not want to do a biopsy as my father does not want to cause her any pain at all. We are looking into radiation, can they do that at home, she really can't walk. Any help would be greatly appreciated. Thanks Jane

 
Old 07-19-2005, 04:38 AM   #24
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Re: very fast type brain cancer...need support

Hi Jane, So sorry to hear about your mother. What are the doctors telling you concerning your mother's condition? Is she at home and not in the hospital? Take care and keep us posted. Scarlett

 
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Old 07-19-2005, 07:25 AM   #25
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Re: very fast type brain cancer...need support

Hi guys--
Thanks for the info and the support.
My dad does indeed have GBM. It is on his left thalamus and is causing problems with his balance and his temperature regulation. He has trouble seeing and a little bit with memory. When he's tired his speech gets fuzzy, too.

My mom and I decided that we wanted to move forward quickly, so we're sticking with the doctors that did his biopsy. Even as we speak, he is in surgery...he went in for positioning around 8 am and won't be out until almost dinnertime. Yesterday, they did a functional MRI to determine locations in the brain where certain functions are centered. Apparently, the tumor has pushed some of his motor and language function forward, and so they feel that they have to go in by the back of the head to get at the tumor. I hope he does okay..I would like for him to come out at least as good as he went in, but I know there are no guarantees.

janied1006--The biopsy my dad had wasn't that bad at all. A VERY small incision (1/4 inch) and we had results of what type of tumor it was very fast.
Like the doctors have told us about my dad (and probably for your mom), a patient with GBM will feel more and more tired as time goes on. If they're having radiation or chemo, this effect will be exacerbated. My dad was also on pills to reduce swelling in the brain...called Decadron (dexamethasone...it's a steroid to help with inflammation). They helped to a certain extent, but not too much.

Are you sure the tumor is inoperable? Did you get a second opinion? My dad's tumor is toward the center of his brain as well, but the neurosurgeons think they can get at a large portion of it.

Radiation cannot be done at home. Look into getting it done at a good facility. Depending on the size of the tumor, your mom may be eligible for Gamma Knife radiotherapy, which is a targeted radiation that is sometimes used for inoperable tumors. Check it out on the web.

Like your mom, my dad started having trouble walking. He tips over and trips a lot. He has to count the steps up to the second floor because he can't see them properly. It's been a really fast progression and very very sad.

Hang in there...do some research...see what's out there and see how your family feels. And post back here, too--we're in this together...we can support eachother...

Thanks to everyone for your help...
MLWC

 
Old 07-19-2005, 08:08 AM   #26
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Re: very fast type brain cancer...need support

Thanks so much for your post. I will say a prayer for your dad. The thing is my mom hates doctors and gets alot of anxiety around them and wants no part of them. It is really hard to get her out of the house into the car and to a doctor, thats what makes me think that this is moving ahead so fast, in less than a month, she lost so much of herself, now she can't hold her urine. She is also on the same pills, but she is a diabetic and they are throwing her sugar way off, so its hard to decide which one to monitor and which one to let go. Both are very dangerous. We are getting a second opinion, do you what the symptoms are from radiation? or what to expect. Please let us know how your father is doing. They said it is definately inoperable because of the location and how big it is, they also said it has destroyed so many cells that she would never get any better than what she is right now.

 
Old 07-19-2005, 08:11 AM   #27
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Re: very fast type brain cancer...need support

Scarlett, Yes she is home, they said we can buy some time with radiation, I would like to know what to look for as far as symptoms and do we go to a pain management doctor or what??

 
Old 07-19-2005, 08:36 AM   #28
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Re: very fast type brain cancer...need support

Hi everyone - I guess with this type of cancer or any cancer of the brain the LOCATION of the tumor probably determines the aggressiveness and prognosis. My dad had 3 major tumors - one was just behind his sinuses (inoperable) - one on his left lobe which I believe controls speech and walking or fine motor skills. Like I've said at first we all thought he was having a stroke - same sort of symptoms - slurred speech - stumbling, etc. And the 3rd tumor was back behind his ear. The day after the x-rays they took him into surgery because they really couldn't operate to completely remove the tumors but they could relieve the pressure that he was feeling. So, that is what they did.

The doctor told us that these types of tumors are like spider **** - even though they did remove some of the tumor (that they could reach) there was still these **** that were "infused" within the brain itself. Within a couple of weeks - my dad had 6 tumors - one developed on his brain stem - after we found that out - I believe it was 3 days later he passed away . He did have 1 radiation treatment but told us "NO" after the first treatment. We honored his wishes. I don't think he had any ill effects from just the 1 treatment. His last days were peaceful - he just slept.

There was no major pain during this entire ordeal. I had asked the doctor about that because my dad would kind of moan and I was trying to make sure that he wasn't in pain. The doctor did prescribe a very low dosage of morphine for him. I think he did it basically for me because it concerned me that he might be in pain. Looking back I can see where that the morphine (and I'm talking a baby dose really) did make him rest better.

I can remember talking to the doctor about taking my dad home but the doctor told us that it would be best if he stayed in the hospital since they could care for him better than we could.

Take Care...Scarlett

 
Old 07-19-2005, 10:58 AM   #29
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Re: very fast type brain cancer...need support

Janied--
Hi again...
the way that this progresses is just as Scarlett said...your mom and my dad will get progressively more withdrawn and will sleep a lot more; get up out of bed less and less. The doctor told us there isn't pain associated with brain cancer--mostly, you lose sensory perception. The patient eventually just fades away.

You can check online about doing radiation without surgery, but I don't think the prognosis is much better. This may be an individual thing, but from what I've read, overall, it's better if radiation is coupled with surgery. If your mom is very far along, it may be better to spare her the procedure. Side effects of radiation can be harsh but many people manage it because it increases their chance of survival (albeit temporary)--they may include necrosis (cell death) in the area that is irradiated, fatigue and drowsiness, headache, nausea. But it probably depends on the type and dosage of radiation given. I will be finding out about these things Thursday when we have a meeting with the radiation oncologist who is going to treat my dad.

Without any treatment at all, the prognosis is VERY poor. What did the doctors recommend when she was diagnosed?

MWLC

 
Old 07-19-2005, 08:06 PM   #30
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Re: very fast type brain cancer...need support

MLWC-Thanks for writing, the doctor couldn't tell us what to do, but in so many words said do nothing, it is too far along and she is too weak. I am hoping that he can give us a time frame or some idea based on the MRI of how long she has. He did say the pills would be a temporary fix, but they are really not doing anything, maybe making her voice alittle stronger, I don't see much difference other than that. How is your dad doing? Janie

 
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