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I'm re-posting this here! MY dad's story


eblue16

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Re-posting here because I think this is where I was supposed to post first :)

Hello all! I'm Erika and my dad, John, was officially diagnosed with Stage IV lung cancer in mid-October 2012.

It's an odd case, that I will do my best to explain! My dad is 48 and smoked since he was about 15 or 16, but worked hard and quit completely 5 and 1/2 years ago. Thankfully so, because who knows what other kind of damage could have been done. He initially began having pain in his back and lower stomach area in Feb. 2012 but the doctors blindly called it a pulled muscle and that's all. The back pain got worse and eventually, in Sept. I believe it was, he finally got a CT scan of his back. That's when the tumor on his L5 was spotted and our lives immediately halted. They scanned his entire body, finding 2 small spots on his lungs, and a tumor on his jaw. The diagnoses of lung cancer is confusing for his doctor because the spots on the lung are so small and because of the places it spread to, but that is what they are calling it.

My Dad's mom died of cancer at age 51 or 52, so there is a genetic component as well. He also has been a mechanic since age 16 so who knows what chemicals he has been exposed to. Needless to say, its been a tough couple of months. I'm 21 and a college senior and I have a sister, 25, who is a nurse. And then there is my awesome mom. She is such a great support to him and even before the diagnosis, there relationship was beautiful but it is wonderful to see how it has grown even stronger the past 3 months.

My dad finished a 15 day cycle of radiation for his spinal tumor and a 15 day cycle for his jaw. He started first round of chemo about 2 weeks ago, and it is a combination of 3 drugs I believe. Maybe I will post something about them specifically for some more insight. Anyways, he's doing pretty good on chemo, some days he works, others he doesn't. But the days he is not feeling well, it is so hard to see his spirit down even more so than his body. But I like to think his support system is helping!

The doctor gave his around a year to live, but we know they have to give you an estimate. My dad is relatively young, otherwise healthy, and active. So we, well at least I, refuse to believe that prognosis.

If you can relate at all, I'd appreciate some words! I hope to post more often on here and hopefully not as long :)

Thank you for reading and THANK YOU for posting your stories. I showed my dad and my family and friends this site, simply because of the hope and information it has given me!

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I forgot to mention that! It is stage IV NSCLC adenocarcinoma..but the doctor was really not convinced that is started in the lung since it is such a strange case. However, with his long history of smoking, it would make sense for it to be lung cancer. And what confuses me is that he rarely coughs, not respiratory issues or anything of the sort. A lot of people i've read about on here complain of coughing or breathing issues, but my dad doesn't have that. So I wonder if some cases, even as advanced as his is, just do not show symptoms..

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Thanks, Erika.

The most common driving mutation for a smoker's lung adenocarcinoma is KRAS, so getting that tested could be one clue as to whether it is from the lung (although adenocarcinoma's from elsewhere can also be KRAS). It would be better, though, if it weren't the not-so-useful-yet KRAS-driven, because that would open up the possibility that the driving mutation might be a more useful one like EGFR. (ALK, ROS1 or RET might also have a chance, but those are much less likely in a smoker, though still possible.)

There are other IHC (immunohistochemistry) tests that might give them a clue as to the source. I thought TTF1, CK7, and CK20 are the usual ones a lab would check to confirm whether it might be an adenocarcinoma from the lungs. Did they do those tests to help them decide? Here's a paper describing how such things (and others) are sometimes used:

http://www.aaomp.org/annual-meeting/doc ... andout.pdf

Best hopes,

Craig

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P.S. -- I never had a cough. Just a crackling sound when I lay down to sleep at first. Later it grew to be fluid that spilled up my windpipe when I bent over -- my only noticeable symptom. I didn't start coughing at all until after my bronchoscopy, and not even much then. Lucky for me, treatment has been able to relieve that for 15 months so far.

Best hopes,

Craig

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Erika,

I too am sorry to hear about your dad but also very glad you found us here.

My husband was also diagnosed with stage 4 adenocarcinoma and he too did not have any symptoms. No breathing problems or back pain at all. He just complained about feeling so tired. Routine x-rays of the lung showed pneumonia and later biopsy of the fluid gave us the cancer diagnosis.

He was also a smoker who had quit a few years prior to the diagnosis. BUT remember that it's not only smokers who get lung cancer. Anyone with lungs can get it.

Sounds like your dad has a loving family and that can mean so much during his illness.

Please browse our forums and feel free to post anything on your mind.....any questions or even how your feeling.

((hugs))

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Thank you both for the response! I appreciate it and will hopefully be posting more often with questions and even hope to get my dad an account on here, although he's still learning to work his laptop :D

Craig- I'm sure the doctor tested those things, but I'm not sure.. I'm going to ask my parents and post on here when I find that out. I think it's so important to be informed and that's the main reason I'm on here and I hope for my dad to be on here soon. So he can learn more and be more aware of what's going on with treatment and such.

Thanks again!

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Hi, I thought I would chime in. I don't have any technical or medical info to help you with at all. I don't think his case is all that strange. It sounds like the drs. have a plan and soon you will know how it's working. I don't think they need to advise you about how long they think he will live. They don't know that and can only base their comments on statistics. We are not numbers, we are individual patients with our own set of needs. It sounds to me to be very treatable and with a family around him for support, I'm betting on success.

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Thank you Alan, I think you're right. Patients are not numbers and everyone has there own strengths that will help them beat this. Thank you for the encouragement!

I guess the only reason I called it a strange case is because it confused his doctor and she even took his information and discussed it at a convention with other doctors and specialists. But I think she knows what she's doing and we are just anxious to finish these 12 weeks of chemo and see some improvement!

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P.S. -- another way to try to determine the kind of primary is gene profiling, as described in this trial:

http://jco.ascopubs.org/content/early/2 ... 12.43.3755

That describes a new tool used in that trial that enabled them to pick a specific cancer type in 98% of the cases. Whether or not they were correct isn't provable, but it did improve treatment outcomes so it probably was better than not knowing at all.

Best hopes,

Craig

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I just wanted to say welcome, although I'm sorry you have need to find us. It sounds like your Dad has a lot going for him - his age and health, as well as a wonderful supportive family. There have been many people dx with stage iv who have survived quite a few years. While it may not be curable, the hope is to be able to treat it more like a chronic disease.

It is normal to have some down times when you are going through treatment. It can also be hard for most of us who were "healthy" before, to find ourselves feeling pretty bad during treatment. I think men have a harder time with that than women.

Please keep us posted on how your dad is doing.

Diane

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Thanks Diane I appreciate it! Yeah I agree, the feeling bad and missing work part is tough on my dad. He hates sitting at home so we try to convince him that he does need the rest at times while going through chemo. Luckily he loves to read so he has found more time to do that!

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Erika I had stage IV SCLC, diagnosed in November 2009, the tumour was 'the size of an orange' (in the Oncologists words) and had spread throughout my left lung and to two patches on my brain. Considering how big it was I had had no coughing, just feeling bad then getting breathless.

What is abundently clear is that doctors will ALWAYS give you the worst case scenario, they would be foolish not to, so when a doctor says 'you have a year to live; I'll wager that is one scenario of many. I was given 'months'. chemo worked on me and radiotherapy (cyber knife) on brain lesions, I have a PET Scan, MRI every four months and have been clear on the lung since July 2010 and on the brain since 2011. I am not belittling what your dad has but it does not sound as drastic as my prognosis and I am alive and well.

I am no expert, I only know what I went through, but what I did discover was that it is such an individual disease, i.e. we all react differently to treatment and it spreads differently, I would advise your dad to always focus on positive cases, like mine and other people on here. I am your dad's age so please fell free to pass him my details if I can help. (I just joined this forum today you may see my story under Introduce Yourself) Good luck and keep the faith.

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I am so happy to hear your story!! Thank you for sharing it..I love reading positive things like that and i'm very happy that you fought and are doing very well! I'm going to make my dad a profile on here soon and try to get him to get in touch with people like you to talk to and get encouragement and information from. Thanks again!!

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I just wanted to say welcome too. I am so glad you found this site, as you can see, there are a lot of good people here with lots of experience.

I wanted to also let you know that I was your father's age (47) when I was diagnosed. The only symptoms I had was bad pain in my lower back, and lower abdomen also. I never had shortness of breath or a cough. At first we thought it was Kidney stones, then a herniated disc. When the pain got too bad, I had a CT scan and MRI and just like your family, our life halted. I had a very small tumor in my lung, tiny. But also 3 in my spine and one in my brain. At the time of diagnosis I was given less than a year to live, that was 6 years ago. I realize that I am one of the "lucky" ones, but, there is hope, there is always hope, and everyday new research is being done.

My story - viewtopic.php?f=47&t=46162

keep coming here for questions, answers, and support. Prayers to you and your family -

Peace

Janet

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Thank you Janet for the reply! Your story does sound a lot like my dads, besides that he was a smoker at one point. I love hearing stories like yours, and I truly hope you continue to receive good news from your doctors! What a wonderful story!

My sister and I are around your children's ages, i'm 21, my sister 25, and my parents have been married for going on 27 years in February.

Thank you again for sharing your story, i'm going to have my dad read it as well tonight. :)

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I read your story in another forum but I wanted to welcome you again and encourge you to continue posting. Know that you are not alone and we are here for you!

Looking forward to getting to know you,

KatieB

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