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Bad News--Nodules on the Brain


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Leslie and Adrian:

Boy, it just never stops, does it? The old adage "when it rains, it pours" was never truer than for you guys right now. But I guess the main question is, how's your dad taking all of these on-again off-again surprises? Many folks his age can be remarkably resilient and unfazed by adversity.

WBR is getting to be quite common, and I would imagine that's somewhere in my future too. When your dad does start chemo, will it be the clinical trial you mentioned on Monday?

Aloha,

Ned

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i suspect that he will still be eligible for the trial because the study is specifically for the trial of an avastin like medicine in people with nsclc and brain mets.

his spirits are still up. he is strong, eating well and you simply wouldnt know he was sick if you didnt know he was sick. And its probably still better that they figured this out now rather than later. moreover, they did srs on the 3 formed noodules---so he is better off today than he was yesterday. however, i'd be lying if i said that today wasnt one that forced my family and I to gulp a bit.

man, ive had quite a few last couple days, yesterday my house was getting covered in ash and smoke from these LA fires just up the street. the flames were incredible.

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Wow--Are you safe from the flames?

I think it gets a little easier once treatment begins. I know that in the time between her rediation and her chemo (they gave her three weeks rest) my mom got really impatient to begin fighting the tumor. Once her chemo started, things have been on a more even keel.

In the meantime, keep us posted and hopefully the fires will be quenched.

Susan

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thanks for the concern Susan. The fire was never directly threatening my house---but was close enough that we were practically smoked out of our house.

I certainly agree that the waiting and continual timeline adjustments have been one of the harder things for me to deal with since this started.

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quick update: dad is three days into WBR today. He woke up with a little nausea but otherwise reported that he was feeling OK. As I write, he is teaching a class.

oh yes, his dry cough has remained and robitussin wasnt doing much. Yesterday the onc. prescribed "tessalon pearls." Dad took his first dose and mom noted that this has seemed to help already.

My mom also noted that Dad has lost almost ten pounds since a month ago. Beyond reminding dad that he doesnt have the luxury to skip meals, my mom has promised to redouble her efforts to keep him on a (high quality) high calorie diet.

What do you all think about the benfits of having him see a nutritionist who specializes in cancer diets? I think his hospital (UCLA) offers the service.

Anyhow, beyond that, nothing new to report except that it is confirmed that he will be accepted for this medical trial. If any of you are interested in seeing a copy of the trial description, PM me.

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Definitely get advice from the nutritionist - there are all sorts of supplements that can be tried, with high calorie content - maximum return for minimum effort. Great to hear that he is still teaching - that attitude will count for a lot. Don't be surprised though if the treatment catches up with him a bit - radiation therapy does have a tendency to make you tired eventually, unfortunately, but this should get better in time.

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Adrian,

Whatever your father can put into his mouth that tastes good is what he should be eating right now. Vanilla milkshakes were my husband's key to weight gain.

Most oncologists will tell you it is about the amount of calories, not necessarily the quality. There will be some people that feel otherwise. A good diet is nice if you can get all the calories in, but not always realistic. Bottom line is the better weight, the better survival rates.

Good luck fattening him up!

Welthy

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[ Welthy ] Whatever your father can put into his mouth that tastes good is what he should be eating right now.

Right on! Or in other words, "eat what you want when you want."

Adrian, in case you missed this discussion, take a look here -- it has some interesting angles on the issue:

http://lchelp.org/l_community/viewtopic ... highlight=

When I was nearing the peak of my chemo side effects, I was joking with some of the members that this "eat what you want when you want" thing was fantastic and was a dream come true, since I'd had to watch my weight all my life. So I was chugging 1000 or 1500 extra calories a day in Carnation instant breakfast, Ensure, and milkshakes as well as eating as much as I could of what didn't hurt too bad, but still just barely holding on to a weight 5 pounds under my target. My onc explained that difficulty eating and the resultant shortage of calories is not the only factor -- the presence of the cancer itself tends to cause body changes leading to weight loss.

Now that my chemo side effects have almost disappeared, my hair is growing back, and my April scan was pretty good, there's been a disturbing development: in spite of cutting out those 1000 delicious extra calories, I'm almost back to the point of having to watch for weight GAIN! :( My dream has evaporated! :cry:

I'm joking, of course. We all long for normalcy, even if normalcy was not quite perfect.

Glad your dad is doing well and that he's still eligible for the trial. I'll be PMing you for the details. Aloha,

Ned

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