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New Here - Mom with Lung Cancer, spread to Brain


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Hello all. I'm new here. Just about at the end of my rope so I thought I'd try to find a message board for support.

My Mother was diagnosed with Lung Cancer, March 2002 and has since been through radiation and chemo. We thought she was doing well but in October 2002 we had to rush her to hospital from being delirous (spelling). We found out that the cancer had spread to her brain and were told that if she didn't undergo radiation to her brain, then she would only live a couple of weeks at best. So, here it is Feb 4 and she is still with us but I worry ALOT. The doctors told us that the spot on her lung was pretty much in remission and the spots in her brain, they have "under control", whatever that means. In my opinion, I think she has gotten worse and I don't understand why she won't call the doctor. Here is the latest that I have...

She is currently taking Decadron (steriod) but they are slowly weaning her off it. She takes 1/2 pill every other day. Now, I know that a person cannot stay on these for a long period of time but if they give her relief from her headaches then why can't they let her keep taking them? So, now she is having headaches alot again.

While she is coming off of those, she has no appetite but she does eat because she knows she has to; her appetite just isn't all that great. Her muscles aren't doing that well either; seems like she is having a harder time of getting up and down. For instance, last night, I was helping her walk to the bathroom and her legs started to get all whobbly so I knew I wouldn't be able to hold her much longer so I yelled for my step-dad and he came to help me. She seems to be so weak but she fights very hard!

Also, last night, she mentioned to me that her eyes were blurry.

I don't know much about lung cancer, brain mets other than what I read online. I have not been to the doctor with her, only my stepdad goes most of the time. I just want to know what to expect. Is she going to continually get worse and I just need to brace myself for it?

My mother is only 56 years old. So young and was always so full of life and she has fought this with everything in her since day one and not complained one bit. In fact, she isn't on any types of pain medicine right now at all. She doesn't want them. I also noticed that she seems to get out of breathe so fast.

What should I do here? I assume that all of this is normal for lung cancer patients. She isn't scheduled for another MRI until the 24th of Feb and her cancer doc visit is after that.

All I can do is pray that she doesn't suffer and be strong in front of her. She has no idea how much this is hurting me nor will I ever let her see me cry about this. I will continue to be strong for her.

Just wanting to blow some steam here.... just frustrated. I feel like she is slipping away slowly. She just doesn't seem to be able to concentrate either. I don't know why my stepdad doesn't call the doctor every time something changes with her because I would even if they told me it was normal for this or that to happen. I don't think she should sit there and suffer like that. She doesn't seem to be coherent at times. I think the cancer in her brain is far more progressed than they are telling me or my brother.

Ok, ok, I"ll shut up now.

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I'm sorry that lung cancer has brought us here today... There are a bunch of young people here with parents in the fiftyish category... who are watching our parents fights this battle... I am one of them.... My Mom has it....

Most of us are just plain terrified, overwhelmed and exhausted... our parents are our hero's as Kristen said... we don't want to see them sick in their fifties.. it is tooo soon..

You can vent here anytime... most of us do... usually it is one of those same cancer survivors that gives us hope or lets us know that it is going to be okay...

They also help understand the treatments and what our parents are going through...

I know how you feel and it is that whole fear that grips you .... but do let it.. if you can.... (easy for me too say) Check out some of my posts...

Our parents are amazing.... and strong....and loved very much...


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Michelle, Hi-I'm not sure if you've read any of my posts, my dad was diagnosed with NSCLC in January 2002.

Seeing as how the lung spots are in remission, have you looked into Gamma Knife for the brain mets? Unlike full brain radiation, Gamma Knife Kills the brain tumors and they are then reabsorbed by the body. You didn't mention how many brain mets or their sizes. Gamma knife has been around for decades and is becoming more widely available. The center my Dad went to last month just opened in June of 2002. Dads oncologist never even mentioned it to us when the brain mets were found in December, I knew about it from this board and knew that when it came to brain mets, Gamma Knife was the route we would go if it were medically possible. Fortunatly the number and size of the tumors were well within the range of making him a candidate. We told dads oncologists what we were doing, and cancelled the radiation appt. Unfortunatly, not many Oncologists realize how much more available this procedure is.

As I see it, if she still has brain mets, the swelling they cause may be the cause her difficulties in walking and the blurred vision. The decadron helps reduce the swelling and thereby reduces the syptoms, however it being reduced in dosage would not help the swelling. I know it is alot to take on, but if you could find out if GK is available and get her to a neurologist that does it, they would be able to do another MRI and determine if she is a candidate.

If I were you I would schedule another MRI ASAP. I scheduled my dads myself, because when his oncologists office scheduled it we would have had to wait another week for it, thus prolonging any treatment and also opening him up to the possibility of more brain mets or the ones he had to getting bigger.

Is it possible for you call her oncologist yourself, seeing as how your mom won't. Sometimes we have to take on a bigger role in things when the ones we're caring for won't do it themselves. If she is feeling so badly, she may just not be up to it.

I will keep you and your family in my prayers, and please keep us updated on whats going on. I know its hard, and its good that you came here to vent and get information and support. Please take care, Deb

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Guest mmirrelllllll

hello, i am sorry for WHAT YOU ARE going through, but knowthat there are different solutiions. the gamma knife seems plausible. also look into radiofeequency albation for the lung tumors. mirrell

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Guest Barbara T


I am 44 years old and was dx with lung cancer, stage IV, with mets to the brain 4/02. On my first visit to the oncologist, he immediately had me go for my 1st whole brain radiation the same day (14 total). I had one lesion that was showing edema (seven other lesions that were very small) and they put me on Decadron. I also was having blurred vision. I would not wait until the 24th for another MRI. My oncologist was very agressive and recommended the Gamma Knife. I had the Gamma Knife in 5/02 and never felt better. I went in at 6:30 a.m. and home by 6:00 p.m. - I even attended two meetings the same night. Currently getting chemo (Gemzar)

indefinately. My motto "too busy to be sick".

Don't give up!


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Hello again. I want to thank each of you for your words of encouragement. It means alot to me.

Finally, Mom's day sitter, Cathy (which is her best friend) called Mom's radiation doctor this morning and told them about her symptons.

The doctor wants to put her back on her regular schedule of the steriods and see how she does by Monday. Mother said that she feels better when she takes them vs. not taking them. He also suggested that she start drinking some Boost. So, we'll see how she does by Monday and will call them again for something else if this doesn't help. Seems like she is getting slightly disoriented again which is why they FINALLY decided to call this morning. So, must be doing some good for me to "run my mouth" to my stepdad, brother and Cathy about this. I will not stop until my Mother is comfortable. No need for her to suffer any more than she has to.

I'm not sure of the exact number of tumors/cancer in her brain but at the last MRI that was done in December, I think.. there were 2 small spots found. One located on her temple area on the left side and on the right side somewhere right above her ear. Thats about all I know. Like I said, I have never been to the doc appointments with her but plan on it next time. Her MRI is for the 24th and she doesn't see her cancer doc until after that appt on March 7th. Why they wait so long, I don't know.

I'll have to do some more research on the "gamma knife". Never even heard of it until I read it here and I don't think the doctors have mentioned that to my stepdad but will find out.

Thanks again for your kind words of support. I need all I can get right now.

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I am a 59 year old survivor of Non Small Cell Lung Cancer (adeno carcinoma), Stage I. As is obvious, I can relate well to the fiftyish group. Unfortunately, this group is only going to grow as more and more of the Baby Boomers come into play. It is sad that many of us, in this group, grew up to the tune of "catchy cigarette commercials" on TV, radio, and print. These commercials implored us to believe that smoking was good for us both socially and health wise. Our social friends encouraged us to smoke and it was socially acceptable for us to smoke.

I finally quit smoking in June of 1997. I was diagnosed September 2001. I am not ashamed of my smoking history, nor do I blame myself, or others. For our generation, unfortunately, smoking was a way of life. As I see more postings from our children's generation, I only ask that you not "pass the blame". We are fully aware of our misfortunes with smoking, but please understand that we were trying our best to be "socially accepted" and become part of the "crowd". We fully realize, now, that was not the best thing we could have done in our lives. What we want to get across to our children is: "Don't Smoke" period. We know what it causes, and lung cancer is only one of the cancers that smoking is held in risk. Many other diseases, asthma, chronic bronchitis, chronic pneumonia, heart disease, bladder cancer, kidney cancer, colon cancer, and even breast cancer, have been associated with smoking. There are many more diseases associated with cigarette smoking. It has been said, the number of Americans who die of smoking related issues, on a daily basis, is equal to that of two jumbo jetliners crashing each day.

The number of Americans who smoke is declining every day. There is an unfortunate opposite to this, more teens are starting than 10 years ago. I highly encourage people to quit, but also, when quitting, encourage the teens to stay away from smoking, as well.

Yes, smoking probably played a part with my lung cancer, but there were other factors as well; occupational exposure to low level ionizing radiation, laboratory chemicals (before the advent of fume hoods), exposure to benzene, and previous lung disease. All the above were long term exposures, not just passing exposure. I also lived in two very high areas of air pollution, Denver and Los Angeles.

Smoking is the one factor that the general public point to when talking of lung cancer. It is a misconceived idea that smoking is the only cause of lung cancer and that it is a disease reserved specifically for smokers. You, of course, have come to find out that Lung Cancer is not just reserved for smokers. More and more non-smokers, specifically the never smokers, are being diagnosed with lung cancer. We don't say to brain cancer and throat cancer patients "Its too bad you smoked and drank alcohol", or to the colo-rectal cancer patients, "Its too bad you ate red meat". I think by now you get the gist.

One emotion, quite obviously, that I have yet to overcome, is anger. I am angry that I have had lung cancer. I am angry at society for blaming my past habits for my lung cancer. I am angry that society refuses to recognise lung cancer as a very devastating disease that anyone can get. I am angry that society puts blame on lung cancer, but shows compassion for those with other forms of cancer.

On the other hand, I love everyone at this web site, whether they have lung cancer, are a caregiver/family member, or just an interested person. All of you understand that those of us who are survivors/patients (and I use patients in terms of the fact that we continue to be patients, even if we have been declared cancer free), have suffered greatly, be it that we have undergone surgery, chemo, radiation, or a combination thereof. Each form of treatment, goes without saying, has pain connected with it, excruciating pain at that. We have all cried, as we have gone through our course of treatment and survivorship.

It is through our compassion for one another that we find strength to continue.

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I just have to say, you are so right in everything you are saying. My mom is 63 years old with SCLC. THe first question the pulmonologist asked her before he even said it was cancer was "do you smoke?" It was a condesending tone. While he was going on and on telling us how my mother was going to die very soon, he asked me if I smoke. Like as if to say you did this to yourself. My poor mom said that night, "I did this to myself." :cry: I said, "mom, don't ever say that, no one ever asks for or deserves to get cancer. And in her/your generation it was so socially accepted. My mom was saying that she used to smoke with

her doctor!!!! :shock: It was such a different time. Unfortunately my mom was so addicted to those damn ciggs for all her life. SHe tried to quit several times wtih no success. :(

It so pisses me off though that there isn't much being done for lung cancer research (like so many of the other cancers) when it is such a deadly cancer.

Michelle, I would definitely have your step dad call the oncologist. Or you can ask him if you can call. Since my mom started with these awful disease, I have had to be so pushy and aggressive with the doctors to get quick appts and what not. I have learned you really have to be an advocate. I totally feel your pain, having to see your mom like that. :cry:

I will keep you in my prayers.

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