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other people in same situation


Guest shelliemac

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Guest shelliemac

hi I am shelly and my mom has NSC of the mediasteinum which started in her lung. she was diag. in 2/03 and on 5/7/03 we found out she was not eligable for rad. on her initial tumor because it was behind her heart and too much damage would be done to the heart. then her left arm and hand went numb and she could not move her fingers anymore. we did an MRI right there and found 2 legions on her brain. they rolled her right back down the hall and started rad. on her brain the same day. they told us she would need 14 rad. on her head and then on 5/19/03 we will start taxol cocktail again. which worked well with about 80% reduction in initial tumor.

my question is this. now that it has mets. is there anyone out there who has the same situation or more and came back and beat it. Should I consider it fightless or is there any way she can recover. I am lost and confused and angry and pissed and sad and well every icon that can be represented.

i dont mean to sound morbid or pittiful I am just seeing if she is too far gone or can this still be beat???

shelly upstate NY

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I've heard alot of amazing stories here of people who have mets to the brain, nodes, liver, etc...and they are still HERE fighting this disease today! As long as you go at this with all that you've got, get informed about the disease, treatment options and meds, and a positive outlook..it IS fightable! Take a look in NSCLC and advanced NSCL forums (and the others too) and read some of the postings along with the "signature lines" of these SURVIVORS and you will see people in your similar situation. L/C is a bumpy roller coaster, but it is DOable and there IS hope. You've come to the right place. Don't give up, and come here often! Your family will be in our prayers.

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Guest shelliemac

thank you for the encouragement. it helps to vent and get it all out. this is a very frustrating disease because of all the waiting.

i figure if god is going to fight me to take her then I am going to fight him to keep her here. he is gonna have to go through me to get her.

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That's a great attitude, but I don't think it's God you have to fight, I'm sure he is on YOUR side! It's the CANCER, the doctor's, the medical system and this disease you will have to fight! Along with the emotional ups and downs that can be just plain exhausting. Try to keep a positive attitude and know that with all you're doing for your mom, your love shines thru.

This board is here for support and a place for info and to just plain vent! We know what you're going thru, and as a daughter myself dealing with this, I know exactly what you're going thru!

Blessings,

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Shellie,

There are a lot of success stories on this board of people who have had brain mets and conquered it. It is never fightless, only God knows when it is each person's time, and my husband and I will be fighting that until the last second. Miracles happen every day, and there is a lot of wonderful treatments out there that are showing great results.

I would look into the Gamma Knife. There are postings on it on other forums on this board, but from what I've heard, it pretty much targets the brain lesions directly without damaging other areas of the brain. I've also heard that it wipes out these lesions, and most of the time there is no reoccurance in those areas.

My prayers are with you,

Carleen

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Guest shelliemac

:evil::cry:

i feel awful that I am jealous. My friend got good news today from his onc. he found out that his chemo round worked so well that he wont need surgery, only radiation after all. I am elated for him, really I am..but I am also so green with envy that my mom's cancer has spread and I am ashamed that I am jealous of his good news.

I hate waiting and thats all we do here. I cant stand not knowing if my moms RAD will wipe out the legions in her head and if when her chemo starts again next week will her tumors in her chest continue to shrink. I am pittiful aren't I.

i hate this.

shelly

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Shelly,

It's normal to feel that way. When we hear bad news we wish it won't happen to us, when we hear good news we wish we were in those shoes! It's ok to feel these things. Celebrate the things that are good in your life, live it one day at a time and face your hurdles and battles as they arise. Keep the faith and prayers (over 300!) are going out for you and your family.

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Shelly -

Your mom has a good chance of beating the brain lesions. You said she had two?

Mike had two dozen...they just radiated his entire head like with PCI.

The last MRI in February showed that the lesions were all the size of pin heads and the biggest - which had been the size of a golf ball, was the size of a dime. The radiologist who said they might have to do gamma knife on the largest one, said in Feb, that the radiation would continue to work in the brain for six months and that he was confident the lesions would continue to shrink.

Hang in there Shelly - If you don't believe it can happen....well - I firmly believe this:

What the mind can conceive and believe, it can achieve!

Love and hugs,

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Does anyone know exactly what lights up on a PET scan. My mom had one done 3 weeks ago and there were 5 blotches on her scan. The doctor said only two were tumors. The one we knew about in her chest behid her heart and a small one near a lymoh node.

the doctor said thw other 3 blotches were her 2 kidnesy and her bladder. Why do they light up and how can he know they have no cancer in them? has anyone else had this happen.

shelly

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Shellie,

It is possible to have things light up a PET scan that are not cancer. With a PET scan, you mom either has an injection, or drinks a sugar solution that contains a radioactive substance. Cancer cells have been shown to absorb more sugars than other cells. When they scan the body, the radioactive sugar solution glows white on the scan. This is especially telling in areas of the body where sugar should not be, such as the lungs. However, there are areas of the body that naturally absorb sugars, such as the bladder and stomach. These areas will glow on the scan although it is not from cancer cells. I am not sure about the kidneys, whether they are normal for sugar absorbtion.

Sam, our resident doctor, may be better qualified to answer this question.

Best Wishes,

Carleen

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