Official Diagnosis.....

simplyklb · Posted: Tue May 06, 2008 5:15 pm Post subject: Official Diagnosis.....

Hi All,
My dad has been diagnosed with small-cell lung cancer. We won't know how far it has spread until after tomorrow's PET scan. We do know it has spread. I know the survival rates are not great at all.

Kristi

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1035

Kristi,

Oh crap -- I'm so very, very sorry that it turned out to be SCLC. I don't know what to even say at this moment. Please know my thoughts and prayers are with you and your family. Not at all what you expected, I'm sure.

Many hugs,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

simplyklb · Posted: Wed May 07, 2008 11:38 am Post subject: Re: Official Diagnosis.....

Thanks for the prayers. They are always appreciated.

I have been doing a lot of research since Friday. The doctor who did the biopsy.. Her words to my brother and I: The tumor is angry. It pretty much told me what we were dealing with was aggressive. I knew from the research that it was probably small cell.

I am pretty realistic about the whole thing. I am not going to pretend that my dad is going to live a long time. Odds of that happening are pretty next to nothing. (I am not a pessimist... just being practical.) My dad is not going to die today or tomorrow but I don't really give him more than a year due to the condition he is in right now. Plus he has emphysema. He's had it for years and had managed it fairly well.

My goal is to make as many more memories with my dad as I can. The first thing is to see that my dad makes it to my niece's wedding on June 14th. I will be taking lots of pictures.

Kristi

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1035

Kristi,

I'm glad to see that you have a realistic grip on this diagnosis. I'm dealing with the fall-out from my daughter now because she was in denial about the outcome for much of my husband's journey. You have a leg up and will stay mentally healthy with a practical outlook, liberally mixed with hope for more time.

When you originally mentioned "angry", I was so hoping for an aggressive NSCLC like my husband had, because he did pretty well for a long time. SCLC is like apples and oranges, as I'm sure your research has shown. He will likely have a tremendous initial response to treatment, but it typically comes back quickly and with a vengeance. I lost one of my best friends to SCLC during the time my husband was ill.

God bless you for seeing the big picture and wanting to make the time he has count. He'll dance at his granddaughter's wedding and make many wonderful memories for your family. Live for the day -- and yes, take plenty of photos.

Many hugs to a brave gal,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

simplyklb · Posted: Wed May 07, 2008 12:22 pm Post subject: Re: Official Diagnosis.....

My family has had to deal with many things over the years. I've had my own issues to deal with. I was born with a rare condition that required many surgeries. My folks have always there for me. Now it is my turn to be here for them. I am almost 44 and live with my parents so I am on the frontline.

My family does not lie about things like this. My dad came out and asked me about the survival rates. I Just came out and told him. He knows it is bad. Someone told me to avoid the stats... That's not how my family operates. My dad won't give up hope until there is no hope. The odds are tremendously against him. We will take each day as it comes and be grateful for every day we have with him.

Am I sad? You betcha. Am I angry? Yes. Soooo many emotions.

I have to go get ready to go with my parents to Dad's PET scan. My mom has a doctor's appt. while my dad is at the scan so I will go with her. My sister-in-law is taking us since I don't drive.

Kristi

simplyklb · Posted: Wed May 07, 2008 8:21 pm Post subject: Re: Official Diagnosis.....

My dad is being admitted to the hospital tomorrow morning for pain management. He's experiencing a lot of pain. Sad

Kristi

brainman · Posted: Thu May 08, 2008 1:54 am Post subject: Re: Official Diagnosis.....

Kristi, my heart breaks for you, your father, and your family. It sounds like your family is like mine in terms of wanting to know everything... even if it is not good.

You and your family are in my thoughts and prayers as you go to the hospital later today.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1035

Kristi,

My prayers go with your Dad and family as they try to ease his pain. Sounds like they are staying on top of it with an admission. Hopefully they will find the right things to do.

God bless,
PBJ
_________________
Husband diagnosed with NSCLC Stage IV. (Non-Small Cell Lung Cancer) Fought & lived 2 1/2 years with multiple lines of treatment.

Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

simplyklb · Posted: Thu May 08, 2008 3:57 pm Post subject: Re: Official Diagnosis.....

I just got home from the hospital. Dad was admitted this morning. He is in a considerable amount of pain. Five milligrams of morphine as needed is not working. My mom and I told the nurse and she is going to try to another cocktail. I will be heading back to the hospital this evening with my youngest brother.

We met the oncologist. The consult was ordered because the nurse told me at one point. At 12:30, the oncologist came in and spoke with my parents and I for the first time. We all three really like him. The oncologist was very upfront with us, which we really appreciated. We learned about the treatment plan and got the results of the PET scan. The PET scan pretty much revealed what we knew... There is spread to the liver (couple of spots) and the some of the bones. The prognosis is 1 to 2 years with treatment. Without treatment, it would be a month or two. We are not looking for a cure. There's a chance that the treatment will fail my dad. The oncologist said that he has only seen this in a handful of patients. The oncologist wants to do radiation first to help decrease my dad's pain. He is guessing 10 to 15 sessions. He will get a radiation doc into see him either today or tomorrow. Could possibly start radiation before he is discharged from the hospital. Chemo will start after radiation begins. I asked the oncologist about what would be used... He told me Carboplatin and VP-16.

Dad is having an MRI this afternoon. They are doing an MRI of the brain and spine. The internist will be by to see him after 5 PM (after office hours).

Our immediate goal is to get my dad to my oldest niece's wedding on Sat., June 14th. Quality of life is still the main goal.

We are in the process of getting his advance directive set up. I am one of the alternate agents along with my oldest brother.

That's where we are now.

Kristi

simplyklb · Posted: Sat May 10, 2008 3:08 pm Post subject: Saturday Afternoon Update

Hi All,
My dad is still in the hospital. He had his brain and spine MRI. He does have a spot on his skull from the bone metatases. But it has not penetrated the skull. He started radiation yesterday afternoon and has had two treatments so far. He starts chemo on Monday. I am really confused if they are thinking about letting him come home tomorrow or if he has to stay. I am not sure what is going on. I am heading to the hospital as soon as my closest friends get here. They want to see my dad. I will be back later with an update.

Kristi

Tracypie · Posted: Sat May 17, 2008 10:57 pm Post subject: Re: Official Diagnosis.....

Hi,

My mom passed from SCLC in 2006 after a 15 month battle. I didn't know a lot about the disease at the time because the info on the internet was scarce due to SCLC being only 15% of the cases.

Here's the thing about SCLC - first, it responds the best to chemotherapy. However, it loves the brain, liver and spine and often metasticizes to those areas. When my mother was first diagnosed (unbeknowns to us) she also had a spot on her liver and her spine. At the end of the chemo treatment the doc said he had cleared up her lungs, liver and spine (that's when we found out she had spots in those two areas). A few months passed and she was like her old self, we threw her a 60th birthday party and other than her choice to grow her hair back in gray (and not dye it brown) you would have never known she had had cancer. But a few months later, it went to her brain in a spot by her central nervous system.

They put her on an anti-brain swelling medication called Decadron - this stuff works but its very potent and you shouldn't be on it for very long because it has 4 pages of side effects if you google it - one being muscle atrophy. That's what put her back in the hospital.

My mom also underwent a clinical trial for the brain metastices and it was only because that the tumor was pressing up against the central nervous system and she was getting dizzy. But otherwise, it wasn't causing her any issues.

Here's what I know: I asked the doctor when she was first diagnosed because I lived 3000 miles away, what I was dealing with - was she going to die and when? And he replied that she basically had a year to live. Like I said, she lived 15 months and honestly, only the last 8 weeks was when she was hospitalized permanently. So, I think your dad will definitely make your niece's wedding but I also think you should spend as much quality time with your father as you need to.

Make your choices and have no regrets.

My prayers are with you and your family.
Best regards,
Tracy
_________________
Tracy Sestili
CEO of The Beverly Fund:Curing lung cancer one breath at a time (TM)
http://www.beverlyfund.org

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