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Medical Forum / Diseases and Disorders / Cancer / May 2005Help with Brain tumor: anaplastic oligodendroglioma / grade 3
Like so many people here, someone I care about has recently been diagnosed with cancer. My sister has a anaplastic astrocytoma/ oligodendroglioma / grade 3 brain tumor. I have a basic understanding of the tumor. Now I need to look into treatments. To fully understand the pluses and minuses (side effects) of treatments that might be proposed. Any help, links to support groups, links to good informational websites would be greatly appreciated. Thank you in advance, Kevin > Like so many people here, someone I care about has recently been > diagnosed with cancer. My sister has a anaplastic astrocytoma/ [quoted text clipped - 6 lines] > Any help, links to support groups, links to good informational websites > would be greatly appreciated. Kevin, Pam's husband has the same.I believe he had surgery and chemo and radiation. She's on alt.support.cancer I'm crossposting this reply, but please add alt.support.cancer to your list and come join us there and you two can compare notes for surgery/treatments. Has your sister had surgeryand radiation therapy? Best, J > Kevin, > Pam's husband has the same.I believe he had surgery and chemo and [quoted text clipped - 6 lines] > Best, > J Thanks J. Rob has Malignant Anaplastic Oligodendroglioma, also stage 3. He was operated on and over 80% of the tumors were removed. He was then put on radiation and Chemo with Temodar a chemo that hadn't been out two years before. Rob is a part of the phase 3 trials (those working out dosage) for the drug. He's doing pretty good, he's tired a lot, but I suspect that's depression more than anything, and he won't admit he's depressed. There are times when he gets angry and takes it out on others, but most of the time he's incredible. Rob had a bout of nausea with the mega dose of Temodar, but not bad. The radiation did a number on his hair, but that's nothing. He also became tired and had a hard time focusing at times. He doesn't remember any thing else off hand. The hardest part, as a family member/care giver, is to encourage them to do all they can and yet be realistic. Rob says that the only thing that bothers him is that he can't drive. It was hard to get the no driving rule through his head. Having had a brain operation, the odds are better than 90% that your sister will be on some kind of anti-seizure medication for the rest of her life. Most states won't let you drive unless you can prove that you've not had a seizure for 1-2 years. Rob had a seizure last summer, so driving is off his to do list. He hates it. Rob's biggest enemy, really, is boredom. He was never raised to be one of the idle rich. Or poor in our case. If there is anything I can tell you that will help, please let me know. One thing, get you both into support groups. They can make the difference. Pam S. >> Kevin, >> Pam's husband has the same.I believe he had surgery and chemo and [quoted text clipped - 34 lines] > you've not had a seizure for 1-2 years. Rob had a seizure last summer, > so driving is off his to do list. He hates it. I have the same problem. My legs go spasmodic at the oddest times, so no driving. Imagine hitting the accelerator instead of the brake at a school crossing. Getting used to being driven around or catching cabs is a big comedown for someone who always prided themselves on their driving and accident free record, as well as just generally loving cars and spending a lot of time building them. > Rob's biggest enemy, really, is boredom. He was never raised to be one > of the idle rich. Or poor in our case. [quoted text clipped - 4 lines] > > Pam S. Just bring him along to say hello. I have lived on my own for the past 10 years, and the hardest part since diagnosis and op was having to admit I need help, both physically and personally. Don't push, just be there and sometimes turn up with the odd thing that makes a difference, and don't be put off if he snaps once in a while. Rob > > Kevin, > > Pam's husband has the same.I believe he had surgery and chemo and [quoted text clipped - 42 lines] > > Pam S. Hi Pam Nice to see you're still lurking around. How are things going with you? Warm Hugs Alayne > Hi Pam > [quoted text clipped - 3 lines] > > Alayne Well, things are not hunky dory, but we're trying not to complain. Rob's health is as good as can be expected, but our lives are in a state of turmoil, as usual. I think that whoever dreamed up Chaos Theory had a bird's eye view into our lives. Pam S. as stressed as usual > > Hi Pam > > [quoted text clipped - 10 lines] > > Pam S. as stressed as usual Hi Pam, Sorry to hear that things aren't completely hunky dorey :-( I do feel for the situation that you are in but sadly there's no turning back of the clock. How are Rob's moods, did they get them under control? Thinking of you guys and sending Warm Hugs Alayne p.s. life would be pretty boring if there was no stress ;-) > Sorry to hear that things aren't completely hunky dorey :-( I do feel for > the situation that you are in but sadly there's no turning back of the > clock. How are Rob's moods, did they get them under control? > > Thinking of you guys and sending Warm Hugs Well, right now, he loves me but doesn't find me attractive. He thinks I'm spending every one of his hard earned pennies. He also says that I don't do enough around here and that I'm lazy to ask the kids to do anything for me. Worse, he and our son, Mike, were in an accident last week and wrecked the van. We're going through the stress of the accident as well as the usual household stress. On the other hand, he is getting interested in playing games on his computer, and in reading books again. Thanks for all warm hugs, I could use them. Pam S. > > Sorry to hear that things aren't completely hunky dorey :-( I do feel for > > the situation that you are in but sadly there's no turning back of the [quoted text clipped - 17 lines] > > Pam S. Pam, I know it is so easy for me to say this, but I bet your bottom dollar he doesn't mean what sometimes comes out of his mouth. The trouble (well, one of them) with a brain tumour is that it involves the very control panel of your body and not just organs etc at that, it can also control moods and personality too. I remember very well what Tony was like six months before diagnosis. He would completely lose it over the tiniest of things (and sometimes nothing at all). We went on a couple of holidays that year and he continually shouted abuse at me in the caravan, including telling me that he wanted a divorce and I truly had done nothing to provoke the outbursts. Back at home, the girls and I just got used to going upstairs if he had been set off. I took it personally then, but after diagnosis, I put it down to the tumour. I wish that there was something that I could do/say that would make things better for you. I do hope that occasionally you make time for yourself, even for a couple of hours, and can switch off and recharge your batteries. And I've got as many Warm Hugs as you need :-) Warm Hugs Alayne > I know it is so easy for me to say this, but I bet your bottom dollar he > doesn't mean what sometimes comes out of his mouth. The trouble (well, one > of them) with a brain tumour is that it involves the very control panel of > your body and not just organs etc at that, it can also control moods and > personality too. Thanks. I know it is just the tumors talking. I was told that his personality might change a bit after the operation. What really bites is that it's just enough of a change that one who really knows him can see it, but others cannot. Most people think I'm being unfair when I say that he's different than he used to be, because he comes across to strangers as being so charming. Tonight he yelled at me for commenting on the horses in the Kentucky Derby. It seems that he didn't want information on the horses, he just wanted to see them run, now that I'd insisted on watching the race. I shut up, and he said that now that he was listening, I might as well keep talking. sometimes I can't seem to win for losing. I tell myself that he's understandably angry because of the changes in his life and future plans, but there are times when it is hard to be charitable about the whole thing. If it weren't for those in here and with others who understand, I don't know what I'd do. Pam S. > > I know it is so easy for me to say this, but I bet your bottom dollar he > > doesn't mean what sometimes comes out of his mouth. The trouble (well, one [quoted text clipped - 8 lines] > say that he's different than he used to be, because he comes across to > strangers as being so charming. People may say that you are being unfair Pam, but are these people living with Rob.... > Tonight he yelled at me for commenting on the horses in the Kentucky > Derby. It seems that he didn't want information on the horses, he just > wanted to see them run, now that I'd insisted on watching the race. I > shut up, and he said that now that he was listening, I might as well > keep talking. sometimes I can't seem to win for losing. Ooh, Warm Hugs, you've got the patience of a saint Pam. > I tell myself that he's understandably angry because of the changes in > his life and future plans, but there are times when it is hard to be > charitable about the whole thing. I can understand his anger about his life and future changes Pam. Tony was like a time bomb when he had his first seizure and they said he couldn't ride his new motorbike (he had only had it three weeks), and then giving up work and not "being able to provide for his family". Yes, they are understandable frustrations, but you have frustrations too, he is not the man that he used to be, your life/future has also changed since his illness, but you will be the one that gets overlooked. Do you have any support network, like counsellors/macmillan nurses etc? You also need some "me time", even a half an hour stroll around the block, somewhere that you can take yourself out of the firing line. > If it weren't for those in here and with others who understand, I don't > know what I'd do. > > Pam S. I feel for you Pam and will never run out of Warm Hugs for you. Warm Hugs Alayne > I can understand his anger about his life and future changes Pam. Tony was > like a time bomb when he had his first seizure and they said he couldn't [quoted text clipped - 7 lines] > You also need some "me time", even a half an hour stroll around the block, > somewhere that you can take yourself out of the firing line. I work, which gets me away from the house most days. I occasionally get away from the family without having to be at work, but it is not often. When I want to go out for a walk, I either have no takers, or the whole family wants to come along. I'm not sure which I prefer. Yesterday, Rob bought me two little kitty figurines at the flea market. That was so sweet of him. Today, Mike cleaned the house and made dinner with help of Amanda. I only had to talk them through part of it, and speed up the potato salad a lot, so that it would be ready before dinner. One of my adoptive sons gave me a deep shelved shadow box to put more of my cat figures in. Pam S. who sometimes wants a weekend by herself > > I can understand his anger about his life and future changes Pam. Tony was > > like a time bomb when he had his first seizure and they said he couldn't [quoted text clipped - 12 lines] > When I want to go out for a walk, I either have no takers, or the > whole family wants to come along. I'm not sure which I prefer. It's not easy is it. Walking on your own seems pointless, but very good for the soul ;-) Walking with others provides company but misses the point. > Yesterday, Rob bought me two little kitty figurines at the flea market. > That was so sweet of him. Today, Mike cleaned the house and made > dinner with help of Amanda. I only had to talk them through part of it, > and speed up the potato salad a lot, so that it would be ready before > dinner. One of my adoptive sons gave me a deep shelved shadow box to > put more of my cat figures in. Well, that's an improvement. My girls are on a new "regime", basically they get house points for wrong doings and the one with the least gets the pocket money, so improved behaviour during the week and manic cleaning from them on Saturday, cos extra jobs mean points knocked off. Shucks hard task-master aren't I ;-) > Pam S. who sometimes wants a weekend by herself Warm Hugs Pam Alayne. who also wants a week-end to herself ;-) totallyfake@emailaddress.com said... > My girls are on a new "regime", basically they > get house points for wrong doings and the one with the least gets the pocket > money, so improved behaviour during the week and manic cleaning from them on > Saturday, cos extra jobs mean points knocked off. Shucks hard task-master > aren't I ;-) Oh yes, absolutely. Sounds like a jolly good idea to me - mind if I borrow it?  Signature/ Em O(<|={ \ tanada@earthlink.net said... > Pam S. who sometimes wants a weekend by herself I understand. Signature/ Em O(<|={ \ I'm not a medical professional but I found, http://www.ledger-enquirer.com/mld/ledgerenquirer/news/local/11533259.htm very interesting. Best wishes Wess |
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