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64 y/o husband has SCLC and I'm fearful


Ghita419

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Hi,

I've been reading this forum for days now and finally decided to participate. We live in Hot Springs, AR and he's been through all his Rx (chemo, chest radiation, & PCI).

He had only two lesions. one in the right upper lung and one in the lymph of the mediastinum and he is now NED. I know I should be happy, grateful, etc., but I still keep looking over my shoulder, waiting for the other shoe to drop. I am so fearful and realized I need to talk with others that have had the same experience.

I need to hear from other SCLC, especially those in my place who are married to someone with the illness. How do you get past this?

Thanx so much

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Hi and welcome to a wonderful group of people that will guide you along this new journey.

My Mom was DX Sept/06 with Ext Small Cell-if you read her profile below you can see she is doing pretty well. It sounds like your husband was limited small cell which is a good thing. There are many long term survivors on this site - don't listen to statistics-no one knows how long someone is going to live-with cancer or without. My Mom's life changed and so did all the people who love her once she was DX-we learned to live one day @ a time. That's all any of us can really do.

Keep us posted

Dar

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Hi Ghita,

My husband Alan has been battling the beast for almost 3 years now.

His road has been a bumpy one, with another large

bump just recently when we found his cancer returned

again. Please read his profile and know that, although it is a battle,

it can be fought.

How do we get through? Very simply a day at a time.

Sounds simple I know, but to try and get through any

other way is almost impossible. You and your husband

will find your "new normal" between the Dr. appointments and dreaded scans.

Enjoy every moment and do not let the cancer control you in anyway.

By over thinking it you let the beast win.

Prayers to you and your husband

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Ghita, I have this vs. being married to someone who has it, and being just past three months into it, I may not have the best advice, but one thing I do to cope is interact with survivors as I find them.

I have a list of ten of them right now, and they are three to ten years out, and nine of the ten have extensive, not limited sclc. Three of them have had recurrances and second line treatment. All of them are doing well. I have one long term survivor in particular that I talk with on a regular basis, because his advice makes so much sense, and he's a lot like me.

I also read a lot of articles and abstracts off pubmed.gov. That's encouraging to me because I can find long term survival percentages - for example, I'm looking at an article from the Journal of Clinical Oncology from 1994 on PCI that gives a 10 year survival rate of sclc extensive of 5%. Now, that 5% seems like a very small number, however, it gives me great hope, because (1) it's based on a patient population from diagnosis year prior to 1984 (otherwise how to publish survivor results ten years later in 1994), and (2) the number isn't zero, it's 5%. If 5% of any patient population can survive for ten years, then, I probably can too, especially since my starting place is 2007, not 1984, and especially since I am otherwise very healthy and don't smoke any more.

These are two coping mechanisms that I use. So far this is getting me through, and, it's more or less working for me. Since your husband has limited and not extensive (I assume) your situation is far better.

I did talk to a five year survivor tonight; she's in her 60's and has been cancer free for three years; she told me tonight and she told me four weeks ago the same thing - that the fear never goes away, she does dread the scans and there are days when it catches up with her, and that she copes by staying very busy and engaged in her life. She has so much going on it's ridiculous - family events, weddings, travel, etc. Now that I think about it, all the long term survivors have said the same. That's probably why they've survived...

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I am so sorry that you are dealing with this. I just wanted to tell you that what you need to remember is this, none of us know how long we have to live on earth. Whether we have a disease we know about now or not. Enjoy life, even though this is a new normal for the two of you, you can get through this and there are so many that have gotten through this and are doing great. Reach out when you need to on these boards, as you will find much support. Most importantly, try to stay positive as I believe this has so much to do with their healing. Don't forget to take care of yourself too!

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  • 2 weeks later...

Ghita,

I am thrilled to read about the NED! That is great news! I can't say I am married to a cancer survivor, but my dad is a cancer survivor, and I am my mom's best friend...so....haha! Anyway, I just wanted to let you know that I still live my life (2 years later) waiting for the other shoe to drop. It sucks...but it is part of the new normal that we all have to face. Geri from this board would say, "Girl, don't waste your time with that kind of thinking. It is what it is." But man...that is SO hard!

Pray, and keep coming here! We are here for each other!

Jen

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Hi,

I've read all your posts, but now I'm so afraid that, "Yes, the other shoe may be dropping now".

Ever since he finished is PCI, he's been so fatigued, weak, and anorexic. He's down to 138# this morning. He walks around like a zombie, is irritable, gets upset with me for trying to force food on him.

We saw the doc 2 days ago, all is lab work was fine. I'm wondering if he's not NED anymore. His last chemo Rx was the beginning of October. I'm planning on calling the doc again tomorrow because he's seeming to get worse, not better.

I'm very afraid.

Ghita

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I wouldn’t be surprised if your husband’s current troubles are the result of the treatments, rather than a cancer recurrence. Chemo, radiation,PCI and a lobectomy in half a year is a lot to handle. This was the worst period for my wife, but eventually she got her energy back. She’s still dealing with effects 3 years out of treatment, but is very glad she was able to use all those treatments. Hey, if the docs say the tests look good, you have good reason to keep hopeful. I hope things will turn around for you two soon.

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I too wouldn't be surprised if this is the afteraffects of the treatments. My dad was much like this. I attributed some of it to depression too...but I do remember it being very real. Keep your spirits up and keep trying...my dad loved watermelon during treatment...might be something to try!

Jen

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I have Boost, Carnation instant breakfast, ice cream, pudding, pie, chips, just about everything I can think of, but he just says he can't eat, he takes one bite and is full. I've got a call in to the doc and am waiting for him to call back. I'm wondering if there's any medication that will increase his energy and appetite.

He's not complaining of any pain, but I have noticed he seems to be coughing more.

Ghita

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My Dad didn't have an appetite, but he forced himself to eat. He has been through a lot and all that radiation and chemo can really do a number on your appetite. Yes, go to the dr and go through everything with them about his health at this point. They will be able to guide you the right way. I wish you the best and my prayers are with you.

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