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brain mets


Joppette

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Hi all, I just posted at Grace about this, but thought I'd put it out here too. Some of you know that I'm a lung cancer mentor at Gilda's Club in my town. Well, two weeks ago I was give the name of a woman my age (56) who was dx with SCLC with mets to the brain and lymph nodes. She went through chemo and radiation for the lymph nodes and lung. They said they were going to "watch" the brain mets for a while. She was dx in April this year.

She had a CT scan of the brain, and the mets have tripled in size. They told her, that her only hope is "whole brain radiation". Now I don't know that term. My Mom had brain mets, and they did radiate her with very few side effects, but I don't know if that was whole brain or targeted radiation. I just can't remember. I do know they didn't tattoo her head like they did with my Dad with his brain cancer. So does that mean she had whole brain radiation?

My friend says she wants quality of life over quantity. She says she's been told horror stories about whole brain radiation, and is not willing to get that. I'm honestly at a loss as to help her with this. I just can't remember. My Dad's was targeted, I know that from the tatoos on his head. I just don't know the other.

If you have experience in this, I'd so appreciate hearing from you!

It turns out this woman is married to a man that I went to grade and high school with! WE have lots of friends in common. We are getting together next week for tea. We've forged a deep friendship already in just a couple of weeks.

Help if you can.

Judy in MI

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Judy,

it sounds like your mom had WBR.

I have two survivor stories of women who have had WBR and are doing great. One is in my LC support group here in TX and she continues to work full time throughout her treatments.

I remember when she first was given the news about WBR and she was terrified. She had seen her mother go thru radiation and it was a nightmare burned into her mind. After talking with many survivors she felt confident that it was something she could do- and survive. She has gotten a lot of fatigue and mouth sores, but she is two months out of her last radiation and she is working FT and enjoying the holidays.

My dad also had WBR for 2 brain mets back in 2003. They weren't large mets at all, but for SCLC they usually recommend WBR -at least back then, since brain mets for sclc is very common. I didn't get a chance to see what benefits WBR would have for him as he passed away 3 weeks after starting. He did get fatigued and lost his appetitie due to mouth sores. His cancer by then was everywhere so I know it wasn't due to having WBR.

The actual WBR is quick and painless...its' the after effects, the fatigue and mouth sores that are what you have to deal with.

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So sad, she's been scared by "friends" that told her symptoms they had that are actually symptoms of having brain tumors. She's scared to death to try the radiation. So sad. The tumors (2) tripled in size in one month, and if she does not get them radiated, I fear she may not be here by Christmas.

But cancergrace sent me tons of positive stories, so I forwarded them to her, and am hoping this will encourage her.

It's ultimately her choice, and we had a long talk today about that. I told her it's her life, and she has to do what she feels is right with it.

Judy in MI

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I had PCI twice. PCI is Preventative Cranial Irradiation but it is essentially the same as WBR but is given prior to finding any tumors in the brain and to prevent them as well. My side effects really did not occur until months later. The side effects I have had are that my ears constantly feel stopped up like I have a cold and it fried my hair in a strip right down the middle of my head. Although it is growing back it has a course, kinky texture and is a totally different color (but I think the color issue is from the chemo, like the chemo leached all the color out of it.) I need to trim the back of it to give it some shape and then keeping praying the my "landing strip" will get longer, lol; I want to dye it my original auburn color after it gets long enough.

My PCI did uncover my MS thought, so it really was not that bad. couple of bits of advice

1. It will burn the skin on you face, forehead and ears. kind of like a sunburn. The skin will get dry and peel or be scaley...No lotion days the you get wbr. The techs told me it might make the burn worse. So I waited till I got all done. For a while there I had great skin!!lol.

2. They will make a face mask that locks onto the table the you lay on. if you are claustrophobic as I am, (And it ain't a light case that I have either) take an anti-anxiety pill about 30 to 45 minutes before they do the mask.

Other than that, it pretty much was a cakewalk as the machine is open and revolves around you as you lay on the table. You also might experience an odor when they turn the machine on...to me it just smelled like strong bleach. I held my breath when I heard the machine click to a ten count and when I let my breath out the odor was gone. That chemical odor is particles in the air (minute particles) ionizing. It is common and won't hurt you.

Hope that helps.

Dawn

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Judy,

Depending on the doctor is always the final answer. PCI is way less severe than WBR. WBR is as tough as nails and does leave a patient with many side effects and can cause lots of damage. Any nuero doctor will tell you that when you radiate the brain no one knows for sure what the outcome will be. Now that I have said that I would look for a doctor that would consider Gamma Knife in order to fast kill the current turmors. Then he will decide if PCI or WBR would be the best. Problem is time. It is not on her side at this point. If I was her knowing what I do today and at this late point quality of life would be a issue with me also. Tell her that I am very sorry for what has happened and if you email me I will give you my phone number to pass on to her. Just remember to tell her act quick with her decision for or against treatment.

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