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Nickel71

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Hello, my name is Nicole, we just found out that my dad (73) has small cell lung cancer. We found out for sure last week, the doctors started him on his chemo yesterday. They have decided that he needed chemo before doing a PET or CT scan, is this normal? They are doing it 3 days in a row, then we are not sure what happens after that. My step-mom is "telling" me everything, but doesn't want me to call the doctors. Any advice is appreciated, I live 1000 miles away from them and am considering moving back home to help them out. Thanks

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Hi Nicole,

I am so very sorry to hear about your dad. I'm glad you were able to find this site, as there are many people here with experiences similar to your dad's who will be able to offer a lot of insight, wisdom and most importantly support, friendship and caring.

My husband's original diagnosis was SCLC (small cell lung cancer) as well, which was wrong, but when first diagnosed they wanted to do chemo right away. Their explanation of why was that SCLC is very fast growing and spreading and they wanted to start treatment as soon as possible before waiting for all the red tape and beaurocracy around setting up dr. appts and then waiting sometimes weeks for scan results. You will learn that one of the longest waits in the history of time, will be the wait for scan results. The good news is that chemo is designed to attack rapidly growing cells, so most SCLC's have a really good response to chemo. Depending on how extensive his cancer is, whether it is limited or extensive, fast treatment can result in Great results and even long term prognosis'.

I can't say much as to advice on whether to move home to help or not. I guess it all depends on how your dad is tolerating treatment, and how much help your step-mom will accept. My husband tolerated chemo fairly well for most combinations. He had some side effects, but none where I felt I needed someone to come help us, and in fact I preferred people stayed a little bit more of a distance, as chemo does affect the immune system and I didn't want him surrounded by more people with their coughs colds, sniffles etc. And sometimes all the help got to be more irritating than helpful as I started getting so many people who all loved him and wanted to help offering constant advice, telling us what we should and should not be doing, tellig us the same information over and over again from different sources, wanting us to try one miracle suppliment after another and on and on. Plus, through the entire journey, the one thing my husband longed for most of all was to have some time where he could feel normal, to forget his life was all about cancer, where people treated him like normal and didn't all make him feel weak, and fragile and terminal. He just wanted to forget just once in a while.

The best advice I can give you from the perspective of the caregiver is to talk to your step mom and ask her what would be the best help for them. What can you do to help? Offer to move closer, but understand and listen if they say yes or no either way. There are still so many things you can do to help from any location. One thing being Research research research. One of the things I see on the message boards that stand out to me is that often the people who beat the odds, and the ones that are surviving this disease are the ones who have advocates that research new treatments, come up with alternatives, contact doctors and ask questions on their behalf. It will help to start a notebook from the beginning here with chemo drug names, cycle dates and treatments received, doctors appts and scan results. that way you can ask informed and targetted research. Another thing you can do is also offer prayers, support and someone your dad and step mom can turn to and vent to when things get overwhelming. They may want to protect you from all of the ugly side of cancer, but it can weigh them down. Maybe let them know that although it will be hard to hear the dark side of things, you are there for them to come to, cry to, scream to and be scared with. It's a big burden to be someone who hears the fears and thoughts of someone in this journey and do so without injecting your own fears and compounding it, but just listen and let them know it's ok that they feel that way, and they will always be loved, and you are always there for them.

sorry this got so long winded. I will keep you and your dad, and whole family in my prayers, and hope that things go well for him.

God Bless,

Carleen

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Nicole, Carleen has said so much and so eloquently. I just want to add that we will all be rooting for your dad here at LCSC. And when you need to cry or vent or scream, this is definitely the place to come. You will always been met by people who have walked in your shoes. Best wishes for successful treatment for your Dad.

Judy in Key West

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Hi Nicole,

Glad you found us. I was dx'd with sclc like your Dad. sclc does respond really well to chemo so that's a blessing that they got him started so quickly. My chemo was 3 days then a 3 week break, I did that for 4 rounds. Keep us posted and prayers for your Dad.

Dana

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Welcome Nicole. Did your Dad have a biopsy done? Just asking because I had a CT before the biopsy.

Glad you found us. I know lots of survivors who have SCLC , have had chemo and also preventative brain irradiation and are close to or at 10 years and doing well. Best wishes. Keep us posted.

Donna G

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Welcome Nicole. I am so sorry to hear about your dad.

I can't imagine how difficult it is for you to be so far away from home and not knowing exactly what is going on. Carleen has given you some very excellent advice from the best perspective - herself as the caregiver and her husband as the patient. Communication is the absolute key and while not always easy to do, it certainly takes the guess work out of a situation.

I hope your dad's chemo is going well - please keep us posted.

Linda

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Welcome Nicole.

First I like to say that I have a daughter named Nicole and her nickname is Nickel.. (small world huh)

I can't add anything to what Colleen told you. She is an expert at this. Buit I want you to know that LC is not a death sentence. No matter what they find out there are so many treatments now of days to help your mom through this. Half of the battle is fighting this monster and keeping a positive attitude. Your dad is so lucky to have you by her side.

We are always here for you 24/7 for your questions, support, prayers if you want or just to vent. You do not have to do through this alone, we are here for you.

Let us know your moms results...

Maryanne

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Hi Nicole and welcome to this site full of people who have walked in yours and your dad's shoes. Read the stories here of people who are successfully battling this disease. And most of all please know there is always HOPE. I am sending prayers for successful treatment for your dad.

Sandra

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Hi Nicole,

I live about 500 miles away from my mother who has been fighting stage IV lung cancer for 30 months. My first impulse was also to move home to help out, but my mom made it clear tht she didn't want that to happen. It's not that she doesn't love me, but she doesn't want to be responsible for uprooting my life. Before you uproot your life, I'd sugest waiting a bit to see if your father and stepmother want/need you to be closer. I'm luckly that my employer will let me work remotely if I need to head back to be there for a test, procedure or consult.

The first month or so after a LC disgnosis, everyone is in shock. I recommend against making any major life moves until you see what the treatment plan is and how your father is handling it. There may be a time you are needed there, but it may not be for while. All I'm saying is don't do anything rash.

Susan

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Wow! I have to say I am overwhelmed by the responses. Thank you all. I did go home for a visit the past week and it eased my mind tremendously. WE got to see my dad the day before he started chemo, he went 3 days and is feeling ok so far. Tomorrow he goes to the radiation dr. to get that scheduled. Thank you for your words of wisdom! He will get the PET and CT scan done on Thursday, they said it should take about a week to get those results. In the meantime, I call and talk to him and just lethim know I am here. I have not told them of our consideration to move back, we are still trying to figure it out. I was so nervous to go to his house because they told me not to come!! I told them that it was so much easier to disobey when I was 15!! I guess even though I am 38, I still don't listen! He did say that he was glad to see me and that he knew I would come anyway, the apple doesn't fall far from the tree. I appreciate all the input and the perspective from everyone. I was feelings like I didn't know which way to go and what I was "supposed" to be doing. I will keep everyone updated. Thank you so much again.

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Hi, Nicole, welcome.

...We just found out that my dad (73) has small cell lung cancer. We found out for sure last week, the doctors started him on his chemo yesterday. They have decided that he needed chemo before doing a PET or CT scan, is this normal?

Reading between the lines, I'm assuming your dad's SCLC was confirmed by a biopsy, which probably was done because of a suspicious chest x-ray. If that's the case, it makes sense to start chemo promptly, especially if there would be a delay getting a CT/PET scheduled and evaluated. That test will highlight any other suspicious areas that may exist (we'll hope there aren't any), and if that additional information would not affect the initial treatment plan, there's no need to wait for it before starting.

Let us know what chemo drug(s) your dad is receiving, and those of us here who have first-hand knowledge of the same treatment can give you some tips to help him deal with side effects. And when you know a bit more about the situation, including any details about the initial diagnostic workup and the results of the CT/PET, you might want to post a question at cancergrace.org (GRACE — Global Resource for Advancing Cancer Education). GRACE is led by Dr. Howard "Jack" West, a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions online. A lot of us are "dual citizens" and have the same usernames there as here. Of course the GRACE doctors can't make specific recommendations to someone who is not their patient, but they have a knack for laying out the various considerations in a manner that should give you reassurance that your dad's treatment is top-notch.

Best wishes and Aloha,

Ned

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I'm glad you went for a visit. I'll tell you a little secret--even though I advised not to jump the gun about moving back, I have found that visits are always good. Even though my mom will tell me there is no need to come, she is glad when I visit. If nothing else, I will tell her "I just needed to see that you are doing ok with my own two eyes!"

Best of luck,

Susan

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