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need some help


Guest luannie

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Guest luannie

my mom, age 77, was diagnosed 2 weeks ago with nsclc with mets to the brain and bone. she is starting treatment tomorrow. she has to take decadron 12 hours before treatment and again 6 hours before. they are starting her off tomorrow with zometa and then taxol and carboplatin. she is also being set up fpr WBR for the brain mets. any advice about what i can expect or how i can be of help would be greatly appreciated. i'm trying very hard to be strong for her and my dad. but this is all such a shock and very heartbreaking.

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I am sorry for your families troubles. I well understand the worry and the sadness. The worst of the shock will pass in a couple of weeks, though your life is changed forever I think. I can speak to some general things.

I am not familiar with those drugs but can tell you generally, chemo treatment has come a long way and is not as bad as it used to be rumored. Read some of the forums, they will help you. Otherwise, I can advise that this treatment is going to take a lot of time at first, ours was every day for the first two months and it came first - I kept lists of what else to do on the way to or from the hospital, mail bills, buy milk - Just keep going and don't be shy, if anything is bothering your Mom, tell the chemo nurses, they will help with it. Be as available as you can for your parents - rides and company during treatment are helpful, give the main caretaker a break. Also - take over an easy to warm up meal. They are going to be very busy for a while, anything you can do to relieve them will help.

Best of luck. Margaret

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Guest NowakowDA

My Mom has NSCLC in her right lung and two tumors in the back of her brain. She had her 4th of 14 WBR treatments today. The bigest thing to watch out for is fatigue. Her fatigue comes in waves. She will feel fine, then loose all her strength. A while latter she is better. Your Mom will probably loose her hair. Don't worry! It will grow back. Some people complain of what they call metal mouth. To them all or most food tastes like metal. So far, my Mom has not had metal mouth.

Make sure you ask your Mom's Drs. about "all" the side effects of Decadron. This is a powerful drug with powerful side effects. Mom takes 4mg twice a day. Her Rad Onc told her to take Dexamethason (a generic version of Decadron) with Pepcid to cut down on the acid and indigestion.

Make sure your Mom eats, gets plenty of fluids and lots of rest.

Don

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Sounds like a good plan for your mom. The decadron is to minimize nausea from the chemo. Zometa is used to help prevent bone mets. Watch for signs of dehydration (dizziness, weakness, throwing up a lot) and be sure she gets a lot of liquids. Hang in there. You've got lots of support here. Don

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Hi Luannie

I think I may have met you on another site and suggested you come here. If so, glad you found us, and if not, still glad you found us but sorry you had to.

I hope the treatment goes well for your Mum. My Mum only had chemotherapy so I can't answer your questions, sorry. I know how hard a time this can be. Please feel free to PM me any time you like.

Wishing you well

Jana

xxx

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I had the same chemo exactly and I didn't have any problems other that the mouth thrush. Now I have to take another pill for that. The brain radiation only lasted 2 minutes a day x 14 days. I did not like the mask they put on you to hold you still. That seemed to be the most difficult thing for me. I know I have a problem with all that type of things.

Deb

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Luannie,

I'm sorry about your mother. I know how overwhelming all of this can be, and I'm glad you've come to this forum for support.

The Decadron will also help with swelling in the brain from the radiation. It works wonders for that. It would be a good idea to read everything you can find about Decadron, especially if your mother continues to take it after radiation. The dosage is VERY important, and you'll need to be alert to side effects. Your mom should be very careful to take each dosage as prescribed -- don't let her forget a dosage or quit suddenly. You have to taper off.

My father was taking 16 mg per day during WBR and the radiation oncologist forgot to taper down the dosage when the tumors started shrinking. After taking that extremely high dosage for weeks, Dad lost all muscle tone in his legs, arms and neck. Three months after going off Decadron, he still can't stand up because his leg muscles are so weak. He can use his hands now, but I cried last week when I saw what effort it takes for him to sign his name!

You may also want to read about side effects from the radiation. Dad had sores in his mouth, "burns" on his ears and thighs, and, of course, fatigue. Depending upon the number and size of the brain mets, you may also want to look at stereotactic radiation or gamma knife radiation. There are fewer potential side effects than with WBR, and it has been shown to be very effective.

Good luck -- and let us know how things go with your mother (and you). We've all been where you are, and we want to help if we can.

Pam

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You might want to ask the doctor about Temozolomide (Temodor) it is supposed to make the WBR work better. There are a few clinical trials with melatonin for brain mets also. And there is a drug called Xcytrin

http://www.pslgroup.com/dg/1e81f6.htm

Temodor gets about 5% more complete responses (not sure how big this study was)

http://bca.ns.ca/indice/2002/42index.cg ... ead/171601

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