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Guest Mom'sGirl

Hi everyone-

I've been lurking on this board since February. It's the only one I've found that discusses SCLC specifically. I feel like I know everyone although we've never talked! I've been on another board for a while and everyone is so wonderful, but I guess I felt the need to talk to specifically SCLC folks.

As you can see from below, my mom was diagnosed in early February. She is 69 years old, a mother of five (2 boys, 3 girls) and a grandmother of 14. She is truly the heart of our family, the glue that holds us all together. In addition she is my best friend - I talk to her every day, and she and my two kids (Kyle, 5 and Rebecca, 3) and VERY close. She is (was) the most energetic, feisty and loving person I know. She used to walk several miles a day and would basically never sit down! She loves her family to no end - she is simply a remarkable person and is loved by SO many.

To make this even harder than I ever thought it could be, I found out I was pregnant a few weeks after her diagnosis. And the due date is my mom's birthday (11/5). This pregnancy follows many miscarriages while trying for a third child - as a result of these losses, my husband and I had decided we were "done". Miraculously, this unexpected baby has thrived from day one and is a total fighter. I have to believe the timing has something to do with it...

However, it's extremely hard emotionally, living daily with the fear that I will lose my mom and that she possibly might not even be there when this little one comes into the world. Every time the baby kicks I pray that my mom will be a part of its life.

Well, back to my mom - after a tough recovery from the pleurodesis and biopsy surgery, she fought her way through chemo, and after four months the doctor was very impressed with how well she responded - the cancer was almost knocked out. She was so much her old self, active and happy. Then they found the brain mets, VERY small. She took a chemo break to be treated for the mets...and then BOOM, we just found out the cancer is back with a vengeance in her lung and has spread to her liver. She literally started having pain and swelling FOUR weeks after her clear PET scan. This cancer is an evil, aggressive monster. I cannot believe it took hold of her so fast again.

She is still hospitalized in NY (where she was vacationing), but is coming back into town tomorrow (morphined to the gills and on oxygen) and will meet with her oncologist. I am praying that she is well enough to continue chemo. But what then? She only has two months left of chemo, and this cancer seems to be unstoppable. I am feeling truly despondent over this and can't seem to stop crying when I lay down at night. It is not a surprise to me, I suppose - I read all the horrific info on SCLC when she was diagnosed, but reality is a whole different ball of wax, as I'm sure most of you know. I cannot imagine my life without her in it. She is such a vibrant and loving presence.

So I guess I'm not sure what I'm asking for, just some insight, advice, etc...

Thanks all.

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Hi Michelle,

I'm sorry about your moms diagnosis and her latest setback.

SCLC is extremely aggressive, but also it is a type of LC that responds very well to chemotherapy! Her medical team just needs to find the right combination that will work for her.

In our case, my dad was originally diagnosed with two tumors in his left lung and mets to his liver. Chemotherapy knocked the cancer out of both areas.

After a four month break, his cancer resurfaced in his lung and liver, but second line chemo, Topotecan, managed that as well- knocking the cancer out of his lung and shrinking the mets to his liver.

It is disheartening when there is a recurrence and a set back like this. But hold on to your hope.

I think of LC as a chronic disease, NOT a death sentence, that has to be carefully watched and treated when the disease resurfaces- as many times as it takes until it is controlled or eliminated for good.

There are SCLC survivors here who have survived their SCLC diagnosis for several years!! The next chemotherapy combination can bring NED to your mom, and it might be a very long time before a recurrence, or it may never come back. I've seen it happen.

Congratulations on your pregnancy! It must be so hard right now with all the uncertanty of your moms diagnosis, but keep doing what you're doing. Be there for her, show her that there IS hope, that people DO survive and that she CAN be one of them.

Take it one single moment at a time. Celebrate the good moments and in the difficult times, focus on what's next, what's out there, and what is available for your mom. Your mom needs a strong medical advocate to ensure she gets the options and medical care she deserves and that it out there.

For you, take time for yourself. Mental breaks away from "cancer" so that you will be strong enough to be there for her the way you want to. It's important to take care of you and that includes getting support for YOU!

We are here for you. Remember that.

Prayers for your mom, you and your family.

Sending positive thoughts her way for some encouraging news and a successful treatment plan!

Please keep us posted.

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My Mom was diagnosed with NSCLC when I was 6 months pregant. I very much understand the feeling that comes with praying for your Mom to be there every time the baby kicks. It is emotionally confusing and excrutiating and on top of that every-freaking-body thinks that you should be "Just delighted!" over your pregnancy--and of course you ARE, but you are also scared.

I'm sorry your Mom is having such a rough time of it. I echo Katie--there is hope! Hopefully the right chemo is just around the corner and things will start looking a little brighter.

I'm glad that you posted, and I am glad that we can support you through this. If you need an ear about the confusing pregnancy stuff or anything else, don't hesitate to PM me.

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Michele,

Your mom was diagnosed 4 days before my mom died of NSCLC. I gave birth to my third child, a son, three weeks later. My mom lived with us and my twins were her pride and joy.

I resent how we all have to live on pins and needles from cancer. It makes me so angry that it sucks the life out of the patient and everyone around him/her. And to try to mantain a healthy pregnancy while all of this goes on is next to impossible. I had those same exact feelings you do. I found out I was pregnant over the summer last year, and just felt it was the wrong time because my mom needed me. She was having good scans then and all was going pretty well, but having lost my dad to LC also, I know a lot of times the ride is never long enough. When we got the news that the cancer was growing again in November, everything all fell apart at once.

My mom has been gone for almost six months. Ian will be five months old soon. In all honesty, I feel like God knew He was going to take my mom from me and gave me Ian to soften the blow a bit. And I know it does help; in the days between my mom's death and her wake my twins were the only thing that made me smile. And nowadays, when the grief seems to be the strongest, I am ever so grateful to have all three of them. Ian is my miracle baby, in more ways than one: we tried for four years to have the twins and after lots and lots of fertility treatment, miscarriages, and heartache, we were blessed to have a boy and a girl. Then we had another miscarriage and figured we were done. When I got pregnant with Ian I was afraid to hope, but it all worked out and he is a perfect, beautiful baby who looks like his grandma.

It's hard to find a silver lining in the dark cloud, I know. I am crying EVERY SINGLE DAY now. We have essentially replaced one life for another in this house, and it feels so strange to me. I was in utter shock for so long I honestly barely remember some things about Ian's birth. Now that I am starting to come out of the fog, the pain is sometimes unbearable. And the thought of spending potentially the next 50+ years without my mother scares the hell out of me.

I guess in all of this what I'm trying to say is that you will make it, because there really is no other choice. Val (treebywater) and I have been leaning on each other quite a bit, and it helps SO much. It's so sad that our moms won't be here for our children. It just shouldn't be this way. But we're here to help any way we can. Remember that we know what it's like, and we do care.

Please PM me if you need anything.

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Michele,

My best friend has SCLC and hit a snag last week. She had a tumor in her upper left lung and pleural effusion was malignant also. Her original tumor is responding to chemo, but last cat scan showed a new tumor in the general area. She is now starting radiation for 4-6 weeks on the new tumor. She was quite disappointed, but now is moving on for the fight. Hope the docs will find another avenue for your Mom too.

I understand about the pregnancy and it breaks my heart to see someone else go through this. I was pregnant with my twins when my Mother was diagnosed with ovarian cancer. They thought it was going to be a large fibroid in her uterus, so she wanted to get it over before "her babies" arrived. That game plan changed dramatically. I ended up delivering early and my Mom did see the twins and was able to survive 2 1/2 years. It's a rough position to be in, having to take care of three children while wanting to spend as much time with your Mother. My husband was VERY good about taking care of the kids so I could duck out and go to my parents house regularly. Hopefully you will be able to strike a good balance in your household that satisfies everyone's needs.

Keep us posted.

Welthy

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Michele,

Don't give up! As you see from my profile below, look at all my husband has gone thru, I know it is so difficult, and everything you read sounds so doom and gloom. I was like that in the beginning when my husband was first dx. But realistically I can't live that way. Sure I have some really lousy days, moments, but they pass. Has my life changed? yes drastically, with my husband I just take the good days with the bad, I'm not going to kid anyone, it sucks, I hate this cancer, and of all to have sclc..don't even get me going...but stay strong, your mom needs you now more than ever before. You also know sclc responds very well to chemo, she's just started this journey, there are still many options for her, thats what the onc. tell my husband.

I'm glad you joined this wonderful community. Stay in touch.

Grace

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Do not give up. Look below-I was diagnosed in 2/2001 with a relapse in 2/2003 and I am still putting away. A little slower than a few years ago but I still take care of most things here at home.

My mom had nsclc in 92 and died in '94. My sis was preg. with her 2nd one at the time. I know it was so hard on her. Medicine has advanced since then.

Enjoy every day with her.

Cindy

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