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mwhcrew

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  1. Thanks everyone. I know that she has to make her own decisions and that all I can do is try to educate her. It's just hard to be on the sidelines. She's essentially her own primary caregiver, though my family has very open lines of communication (thank God for email). Sometimes it just all seems so entirely futile. Thanks for listening.
  2. My mom's been fighting stage IV nsclc since June, and recently had a setback where they found a brain met had grown. When she was first diagnosed she was very proactive, writing down everything the doctors said, finding out about the meds she was on, etc. However, in my opinion, she didn't start taking steps that she could have such as eating better and exercising, basically taking care of her body to deal with the radiation and chemo. Her doctor said it didn't really matter what she ate, and she has lost a significant amount of weight. All along my family has done a good job of keeping on top of things; my two sisters and I all live far away but my mom's siblings live near her and have been great about taking her to appointments and keeping track of things. With the recent setback, I have this feeling like no one really knows what's going on. Her radiation dr. wants her to go get a second opinion before doing gamma knife on the brain met, but has said for her to start taking Tarceva. Her oncologist basically said she could go get a second opinion but that she probably shouldn't bother, and doesn't want her to start the chemo. My mom has also gotten very confused, whether from the tumor or chemobrain or the effects of radiation or whatever. In any case, I feel like we're getting close to the whole thing spiraling out of control, with no one really knowing what she is supposed to be doing or what she could be doing. On top of that, I feel there are a TON of things she could be doing that she's not. I've talked to her about it a lot, and she either gets angry at me or just placates me and says she'll do it tomorrow. She'll eat better tomorrow, or she'll look into support groups tomorrow. I'm just really frustrated because i feel like this is the type of thing where you just can't leave any stone unturned, and we're just breezing past a ton of them. Any thoughts? Thanks for listening.
  3. My mom was diagnosed stage IV nsclc in June 2006. It's been 7 months now and she's still going strong. Thanks for putting this post up, the statistics are grim, so it always helps (especially on rough days) to hear of people surviving for so long!
  4. We were recently told by a nutritionist to try using Hydrazine Sulfate and PolyMVA to fight cachexia in my mother. I of course won't start her on them until I've talked with her dr. about it. We have a meeting with the Dr. on Wednesday, and I'm a bit worried that she won't support using these supplements. From the very beginning she hasn't been very vocal about nutrition at all, saying my mom should eat whatever she wants. I know that cancer feeds on sugar, but even when I asked the doctor about it she didn't seem to think it matters. My mom loves her doctor, who is very nice, so I don't want to suggest she find someone else, but I have a hard time agreeing with her that nutrition doesn't matter. How can it not matter what you feed your body?! In any case, if anyone has any arguments either for or against hydrazine sulfate or polyMVA please let me know, I'd like to be prepared when I go in to the meeting Wednesday. Thanks!
  5. Thanks so much everyone. It's just good to hear that things can get better. I learned from my aunts today that they think the sudden change could be due to a new medication she's on which is supposed to increase her appetite, they think it may be a bad drug interaction. I will finally get to see her tonight, which will be a great relief to me. Thanks for all the support.
  6. Thanks everyone. My mother was 57 when diagnosed, 58 now. She's having trouble and mixing up things, like I am going to visit her tomorrow but she told my aunt that I'm not coming tomorrow, plus mixing up other words. It helps knowing the symptoms might get better, though this isn't a path I'd choose.
  7. My mother was diagnosed in June with stage IV nsclc with metastases to the brain. They immediately began whole brain radiation therapy, which they did for 4 weeks, followed by stereotactic radiation and then chemo. The tests have all come back saying the brain tumors are dead and the other tumors are shrinking, which is great news. However, she's exhibiting a lot of the symptoms of dementia, which she believes to be chemobrain. She's forgetful, but has only recently started having cognitive difficulties (eg. today she was looking for her scarf in her checkbook). They're doing another brain MRI on Monday, but does anyone out there know anything about chemobrain, and is the possibility there to get better? I know the statistics for stage IV cancer aren't great, and I know that dementia is one of the side effects of WBRT (occuring in 50% of 2-yr. survivors). Is there any hope? tx.
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