Lots of Questions

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Lots of Questions

by Teejayemm on Mon Sep 26, 2005 12:00 AM

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[I posted a version of this on other boards, sorry if you hit this more thasn once] This Summer my mother (82 years old) was diagnosed with metastatic melanoma in the brain (one tumor, multiple lesions) and lung (one tumor). They moved quickly (too quickly maybe) with a palliative course (13 treatments) of Whole Brain Radiotherapy. She's been a fighter (warrior) all her life. Fought to move from being a secretary to being and executive, fought for open housing, marched with Dr. King in Selma, fought to help my Dad get sober (over 25 years now!), as director of a meals on wheels program fought to help people stay in their homes and remain "independent"...fought for those she loves and she has lots of love. When she started the radiation, she had the fight in her. When she finished she still had some fight. Since then (7 weeks) it has been a losing struggle. Some hopeful signs the last week or so, but mostly she's been fatigued, depressed and passive. Eating and drinking is a struggle, she's weak and with little food or exercise is getting weaker. The fight is coming back a bit, but she's scared. She tried Marinol for the appetite last week. It may have helped, but she got vertigo and stopped taking it. She's on a low dose steroid and that helps the appetite and the strength a little. Any ideas for other things would be appreciated. She's got a prescription for an ant-depressant or anti-anxiety drug (not sure what), but hasn't started on that. I know with her age and the cancer being in the brain that this is a place to be careful. Any advice here would also be appreciated. I'm beating myself up a bit for not being more proactive in exploring alternatives to the WBRT. Before she started, I knew the efficacy was minimal and the side effects potentially serious. Things were moving so fast and everything was so confusing that I figured the doctors knew best (not a position I usually hold). On this front the "good" news is that 6 week post radiation therapy showed no growth on the tumor, most of the lesions and no clear reading on two lesions (maybe growth, maybe not). Right now the goal is to get her strong enough so that A) She can enjoy life more and B)We can consider Temador. I've got lots of questions about the Temodar (and the Temodar and thalidomide combination), but right now I am most interested the reports about the presence of methylated MGMT genes in the cancer as a predictor of the effectiveness of Temador. Here's one: http://www.medicalnewstoday.com/medicalnews.php?newsid=14153. I don't even know how to get started looking into this, getting her tumor analyzed or anything...Anyone who knows the first steps, please set me on the right path. This is probably a good place to say a few things about her Oncologist. She's at a major cancer center and no doubt competent. However, at some level she's written my mother off and she's been absolutely awful about anything but the progress of the disease. The first means that among other things she was discouraging about the Temador and made a point of mentioning the cost multiple times (She's got great insurance and a good sized nest egg). The second means that while she'll be "helpful" if we ask about treatment for the appetite, the depression, the fatigue, she doesn't go there unless we push. In other words, she sees a depressed woman, losing weight and getting weaker and figures "Oh well, not my job, I'm an Oncologist..." This week we're setting up a more holistic assessment and (I hope) treatment program. We are going to start that with her Internist and at very least get a referral from him. Don't really know where to go to get someone to look at the side effects and the big picture and try to do something about them. Also going to talk to the Cancer center social worker. Once again, where to go and who to talk to are things I'd love to get people's thoughts on. I know that hospices have some expertise on some of this, but my mother has a huge psychological block with hospices. Hospice = Death in her mind and as I said at the top, her will to fight is fragile and just having an appointment with hospice people could break it. This has gotten pretty long, so I'm going to leave it at this for now. One last thought. Reading this board has been a good thing, seeing people helping people, sending their thoughts and prayers. So my good thoughts and prayers to all of you and all of your loved ones. TJ

Lots of Questions

by Garland on Tue Sep 27, 2005 12:00 AM

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Welcome to the board...sorry it has to be under such circumstances...maybe i can help a little. The Temodar is the standard treatment right now along with the radiation treatments and steroids. I had no problem with that medication and they have a lot of new ones on the horizon with many in trial. The Brain Tumor Treatment Center at Duke University, Durham NC, is a great place for you to contact because they are specialists and bt is all they do: 919-684-5301 fax 919-684-6674 www.cancer.duke.edu/btc if she has a problem with hospice, why does she have to know they are from hospice? collect what info you can and then have a "specialist" come by to see her. hope this helps, we will be praying for you.
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