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New to this board, and SCLC


laberl

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I just wanted to introduce myself...My mom was diagnosed with limited SCLC one week ago today. The last few days I have been "information hungry" and have decided now that the less research I read, the better--it's just not "helping" me cope with this as most of the research gives grim worst-case-scenerios and statistics I'd rather not know.

We are truly trying to focus on the fact that it is limited and was caught early. She began Chemo on Monday and Radiation on Tuesday. The difficult part for me is that we live 8 hours away from each other and I can't be there for her.

I guess at this point I'm physically exhausted myself. I'm angry, sad, scared to death, and I can't stop thinking about this and what the next few months and years will bring. I am already thankful that I found this board-although I have a wonderful husband and huge support network, it's nice to know there are people out there who are or have been in similar situations.

Anyway, thanks for listening.

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Larissa

I am sorry that you had to find us but glad you did. You couldn't have come to a better place for information, understanding and compassion. Most of the other sites on the web dealing with Lung Cancer are very negative and I gave up reading them a long time ago. Many on this board are survivors of all types of lung cancer I was diagnosed a year ago and told I had 9 months, with treatment I am still here and still pretty strong considering that I have extensive SCLC. Hang in there, the beginning is the worst, very scary, my advice to you is to just take it one day at a time and give your mother as much support as you can. Seeing as you are 8 hours away, call her every day or email her if she has a computer. Please come back here anytime you want answers, to vent or just need hope and understanding. Its a wonderful group of people on this board who are always willng to help each other

Bess B

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Guest hhamadyk

Hi Larissa,

Welcome. Its unfortunate that you have to be here under your present circumstances, but I agree that you won't find a more informational, supportive group of people. I felt just like you when my mother was first diagnosed with extensive stage SCLC last March. It seemed like everything I read had a prognosis for the worst. My mother was diagnosed almost a year ago and she is still going strong. Even a year later I am still "information hungry" and while it sometimes gets the better of me and brings me down, there is always the hope that I will come across some encouraging news. This message board was definitely one the best places I found in my search. As much as my local friends are there for more during all of this, there is something special about being able to talk to the people who here who really, truly understand what you are going through...share you anxieties, your downs and celebrate your successes....and there are many here...many people who's successes with this disease who are an inspiration to all of us. You've come to the right place.

Praying for your mother and your family,

Heather

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hi Larissa, I am sorry for your mom dx with sclc. This is a horrible experience I had in my life. As a daughter, this is really unexpectedly happened earlier than what I never expect and predict. I understand your feeling.

In my opinion, you should do more researches for your mom. As knowledge could fight better treatments from oncologist and you will know what is going on. This is a long-term battle that you have to laugh as much as possible and cry as much as possible. This is my experience. Sometimes both cry and laugh really relieve emotions.

At the beginning stage after diagnosis is the toughest period because you never expect this happened. Moreover, during this period, u will spend more time on researching about this disease. But, afterwards, this will improve.

Stay with us and you could ask questions and share your story with all of us as we are on the same road.

Best Regards

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Dear Larissa,

I'm glad you found us. As much as this is not "the place to be" it's good you found us because all the reading you can do on the web can truly depress you - you don't need that, you need HOPE. that is what you'll find here. I was diagnosed with limited sclc in April of 2002; i am now disease free and this is Feb. 2004! - tell your mom that. Almost two years. It is a hard, hard journey, but you'll find many supportive people here who will answer all your questions, and will help you to put a hopeful spin on this disease. With small cell, it is very important to start treatment right away, which you have done and that is great! Once that medicine starts, things will get better. Please keep us posted. and give your Mom a hug - Moms are important people!

Joanie

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Hello, Larissa, I know exactly how you feel. I just did my first post yesterday and already received information & support from this group. As soon as I learned my sister's diagnosis, I jumped on the Internet because I wanted to find out as much as possible in order to help her. After the first few hours, I felt like curling into a ball. Some days I just couldn't face the computer, or any more dark, negative information. But, I kept looking, & I find something new every day some things useful & some not. I have to admit, my research helped her find a very good oncologist, and kept her informed & educated about everything being done to her and helped keep her on top of her treatment, which was important as there were "gaps" that we were able to address. I'm really glad that I found this group because I can communicate with people who are actually going through this, & not just reading a lot of grim statistics. I don't live close to my sister, but I call her every day. Sometimes we talk about her treatment but mostly we just talk and laugh. When I can, I go to visit and we pig out on "forbidden" foods--who cares about watching our weight! I want her to remain POSITIVE. Da's Sis (SCLC with liver mets, dx'd 12/03)

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Larissa, welcome aboard. Sorry to hear about your mother but as has been said you are in a good place here. The best news is that she was diagnosed with Limited SCLC. SCLC responds well to chemo and radiation . I was diagnosed with Limited SCLC and am now in remission!!! DO NOT READ THE STATISTICS!!!! Statistics do not apply to any of us, they are outdated and positively unable to be of any use to anyone since we are all different. There are a lot of caring and knowledgable people here so please come back often and let us know how things are for you and your mother. We are here for you as well as her. Get her onboard if she has a computer.

David C

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Thank you, thank you all so much. Although I am having ups and downs (trying to keep it together at work but of course falling apart when I get home) I just want you all to know that you have all already lifted a weight off of me. Knowing that there is HOPE is something I need to keep reminding myself. I am so thankful I have this as on outlet and thank you for all of your support and kind words. I'll keep you posted as to how she's doing. She has officially finished her first week of chemo and feels awful, but she's glad we have one week over with. Thanks again and take care.

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Larissa, welcome (though we all wish you didn't have to meet us).

Set the statistics aside. My mom pushed her radiologist for some stats, and the ones he gave her ended up being compiled from the '70s and '80s!

Take it one step at a time. The first thing to do is get your mom into remission.

I know how you feel about distance. My mom is only 40 miles away, but because I have 3 sons (12, almost 4 and almost 2), it can be very hard for me to visit. The worst part is when my kids get colds, because I don't dare expose her to the germs. I do call every day to check in.

Don't let statistics - or even setbacks - scare you. Every patient is an individual. My mom spent 4 days on a ventilator before her diagnosis because her first bronchoscopy made her bleed. But now, she's had such a dramatic response to chemo that her onc is giving her radiation just like a limited case would be.

Take a deep breath and fasten your seat belt. LC can be a wild ride, but there are long-term survivors. Helping your mom take the best care of herself that she can will go a long way.

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Larissa,

I know a little bit how you feel. I live across the country from my brother and his family, and I work for a childhood cancer research foundation. The day after my brother (DavidC above) found out he might have lung cancer, I had to fly off to a research meeting.

I'm not a medical person, I'm a fundraiser. So I had immediately hit the internet looking for info, and I was a mess. At the meeting, many of the doctors and nurses who have become friends noticed something was wrong and came up to ask me. As I said, I was an absolute mess.

But these experts helped me a great deal by pointing out a few things about statistics. As we tell parents of kids with cancer, statistics are only there for information, NOT for predicting any individual outcome. Even if the statistics are very scary, there are always people who prove them wrong, who "defy the odds." (Boy, could I tell you stories!) :)

AND the statistics are always, by definition, out of date. They are based on survival rates of people treated several years ago and longer, and based on the general population -- many of whom have multiple health problems at diagnosis. AND research continues to make improvements all the time, so the treatment your mom gets today may be much more effective than what those patients in the old studies experienced.

ANyway, like everyone here says, don't get too scared by the statistics. Your mom isn't a statistic, my brother isn't, no one is. Best to look forward at what's best for her and get on with the fight. :) You're in a tough place right now, but it will get easier to handle. Hang in there, we're here for you!

BeckyCW

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My Mom, too, was diagnosed with SCLC three weeks ago. There are wonderful people here. They are great are encouraging and holding us all up. There is so much info out there. Some days I want to read it all and other days I can't bear to read any more.

The one thing you can count on is finding people here that understand. I'll be thinking of you and keeping you and your mom in my prayers.

Soccermom

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Larissa -

I was diagnosed with limited sclc on 11/1/02 - and I'm still here and kicking!

Life is even BETTER than before this creature entered my life - maybe because even though I've been in remission for a year and a half - I treasure every day.

Get your mom on this board........I'd love to talk to her and help her through this. The emotions she is and will have to fight thru are enormous, but she can do it and beat this!

Hugs and prayers,

SandyS

(Okay, okay - "biker chick"? - not until last year, when I got in to remission and realized it was something I always wanted to do and now that I'm better - I'm doin' it!)

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Welcome Larissa,

Well, I guess I can't add much more to what those before me have said. They are right, this site is a lifesaver and full of loving supportive people.

Your mother, as well as your family and you should hold onto hope for there is much success with Limited SCLC. It is a difficult ride, but this can be beaten. Even though you are far from your mom, I am sure she knows how much you care and will feel your love and support. I would just suggest calling her as much as possible and try and keep her positive and keep her spirits up. Surround her with love.

The only thing that I would add is to take care of you. Only by taking care of yourself, physically and mentally, will you be strong enough to be there to support your mom through this whole ordeal. Although it may seem impossible, try and get rest, eat well and laugh cry whatever you need. And we are here for you as well.

I will be praying for your mother, and for your whole family.

God Bless,

Carleen

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