BridgetO

Yay again, Rikke!

Yay again, Rikke!

Yay, Tom! I understand the issue of  now thinking you'll live longer than you thought you would. Before I was diagnosed with lung cancer (stage 1a garden variety adenocarcinoma), I had a Stage 3 rare and aggressive type of cervical cancer with a "dire prognosis" (that's in my medical record!) I had aggressive treatment, which led to a lot of late occurring and long term side effects. I felt like I wasn't going to have a long life. I resolved to live as well as possible in whatever time I had left, but I refused to make plans for anything more than about a year out. For several years at every CT scan I was sure this would be "the one" and they would find mets. But after about 3 years some optimism about my life span began to creep in. About 5 years out, "something" appeared in my lung on the CT scan and It turned out to be the adenocarcinoma. I was actually relieved that it was a new primary cancer rather than a met from the cervical cancer! I'm now 13 years out  and still NED on the cervical and almost 8 on the lung cancer (as well as 16 on a breast cancer). I no longer expect bad news, although I know recurrence is still possible. At times I'm amazed that I'm still up and moving around and I have a pretty good quality of life, even, at 78.  I hope you will do at least as well!  You too, Rikki, and don't spend all of your retirement savings!

I had a small, slow-growing nodule in my lower right lobe that didn't show any uptake on the PET.  Because of its location, it couldn't be biopsied without surgery. I had a lobectomy and the noduleturned out to be an adenocarcinoma. My decision to go with the surgery was influenced by my having had two prior non-lung cancers and this thing could have been a metastasis, although the docs all agreed that it was most likely a primary lung cancer due to its appearance on the CTs.

I had a small, slow-growing nodule in my lower right lobe that didn't show any uptake on the PET.  Because of its location, it couldn't be biopsied without surgery. I had a lobectomy and the noduleturned out to be an adenocarcinoma. My decision to go with the surgery was influenced by my having had two prior non-lung cancers and this thing could have been a metastasis, although the docs all agreed that it was most likely a primary lung cancer due to its appearance on the CTs.

I had a small, slow-growing nodule in my lower right lobe that didn't show any uptake on the PET.  Because of its location, it couldn't be biopsied without surgery. I had a lobectomy and the noduleturned out to be an adenocarcinoma. My decision to go with the surgery was influenced by my having had two prior non-lung cancers and this thing could have been a metastasis, although the docs all agreed that it was most likely a primary lung cancer due to its appearance on the CTs.

I had a small, slow-growing nodule in my lower right lobe that didn't show any uptake on the PET.  Because of its location, it couldn't be biopsied without surgery. I had a lobectomy and the noduleturned out to be an adenocarcinoma. My decision to go with the surgery was influenced by my having had two prior non-lung cancers and this thing could have been a metastasis, although the docs all agreed that it was most likely a primary lung cancer due to its appearance on the CTs.

Yay, Tom! I understand the issue of  now thinking you'll live longer than you thought you would. Before I was diagnosed with lung cancer (stage 1a garden variety adenocarcinoma), I had a Stage 3 rare and aggressive type of cervical cancer with a "dire prognosis" (that's in my medical record!) I had aggressive treatment, which led to a lot of late occurring and long term side effects. I felt like I wasn't going to have a long life. I resolved to live as well as possible in whatever time I had left, but I refused to make plans for anything more than about a year out. For several years at every CT scan I was sure this would be "the one" and they would find mets. But after about 3 years some optimism about my life span began to creep in. About 5 years out, "something" appeared in my lung on the CT scan and It turned out to be the adenocarcinoma. I was actually relieved that it was a new primary cancer rather than a met from the cervical cancer! I'm now 13 years out  and still NED on the cervical and almost 8 on the lung cancer (as well as 16 on a breast cancer). I no longer expect bad news, although I know recurrence is still possible. At times I'm amazed that I'm still up and moving around and I have a pretty good quality of life, even, at 78.  I hope you will do at least as well!  You too, Rikki, and don't spend all of your retirement savings!

Hi Stephanie and welcome here. Edive buddy is right that expecting blood levels to stay the same isn't realistic.  Neutrophils- white blood cells that fight infections- especially take a beating, My lung cancer was stage 1a and I didn't need chemo., but 12 years ago I had a different cancer that was stage 3 and aggressive. Chemo caused my neutrophil count to dip and the second time it went to zero, an emergency situation. I was given antibiotics to stop possible bacterial infections . After  subsequent infusions I had neupogen, given by injection, and it kept my neutrophils from crashing again.  I also had an infusion of packed red blood cells when anemia reached a dangerous level. My treatment was 12 years ago and I have been NED (no evidence of disease) since.
My point is that if blood levels of anything reach a dangerous level, there's usually some action that can be taken to remedy the situation- medication, biologicals, supplements, postponing your infusion until the level rises, etc. It usually isn't a reason to discontinue a regimen that's working.
Advanced cancer of any kind is life-threatening and treatment often needs to be aggressive to control it. So hang in there, talk to your oncologist about the significance of each level that's low, and what if anything needs to be done about it. Hang in there and I wish you a long and meaningful life.
Bridget O

Thanks so much for sharing some of your story and for the welcome, Lou!  Yes, to cancer all over the family.  I didn't mention my mom died (at 85) in 2011 of a primary brain tumor and my brother died of kidney cancer at age 53 in 2005.  My mom lived a week after diagnosis and my brother 3 or 4 months.  I actually have one sister left who is 70.  I am almost 62.  Yes to various cancers in the extended family too. 
Thanks for the resources.  I have been doing a lot of reading the last handful of months though due to other health issues I generally stick to medical articles, etc.  I have seen the timelines for life expectancy are way off so thank you for that reminder.  Because I am likely to have adenocarcinoma if diagnosed I am not too worried b/c of all I've read, including from survivors on some other sites.  I think back to my dad who was diagnosed in 1975 when there were few treatments.  They said he likely had lung cancer five years before diagnosed.  With surgery and Cobalt treatments back then he lived 2 years.  Blows my mind when I think about that so when I see all that is available today and how so many are doing I don't question that.  Though... I do see some who do not fare well or for long....  
I will check out the Lung Cancer 101 and blog before long.  Haven't been awake long and have to get ready for work here soon : )    Thanks again, Lou!

Welcome to our forums.  I'm sorry you need to be here but glad you found us.  We're a community made up of LC (Lung Cancer) survivors and some caregivers.  The stages, types, and treatments we've experienced are "all over the map" so you'll be able to ask most any question and find people with firsthand experience.  Like you most everyone in my family died of cancer.  My dad, mom, most of my uncles and aunts on my mother's side, and a step-sister, so like you I understand the situations reasonably well..  What I can tell you is that when my mom died from LC we didn't have many of the treatments and trials available today.  So you have the experiential knowledge but I think it's also good to learn all you can in an updated manner so I'm going to share some different information with you.
We have a section called "Lung Cancer 101".  It covers causes, diagnosis, treatments and all aspects of Lung Cancer it can be found here. An important blog written by one of our senior member is titled "10 Steps to Surviving Lung Cancer; from a Survivor" it is on this page.  This member was originally diagnosed at Stage 3 then Stage 4 and after 20 years of treatment has been declared "cured". A tip for you; stay away from Dr. Google.  Outcome statistics found there are normally over a 5-year period and don't accurately reflect new treatments available.  Neither do they consider the individuality of our situations.  You're always better sticking with your treatment team for that information. Please stick around, update us as events unfold and ask any questions you may have.  We'll be here to support you.
Lou

@NYC GUY, you may want to re-post this as its own topic-- it will likely generate more responses. 
I'm always envious of people who have the option for surgery. With surgery, you get rid of the nasty thing and you get a biopsy. My tumor and lymph node locations sent me down the road of chemo and radiation, and now, a targeted therapy.  
If you are concerned, it's best to find a second opinion, ideally, from a major cancer center. You're lucky to be near several with the federal NCI designation. You can learn more about why the NCI designation can be helpful here. 
Please consider re-posting this in order to get more feedback. And, keep us posted.

Woo hoo, good for you!

Woo hoo, good for you!

Woo hoo, good for you!

Woo hoo, good for you!

Yay, Tom! I understand the issue of  now thinking you'll live longer than you thought you would. Before I was diagnosed with lung cancer (stage 1a garden variety adenocarcinoma), I had a Stage 3 rare and aggressive type of cervical cancer with a "dire prognosis" (that's in my medical record!) I had aggressive treatment, which led to a lot of late occurring and long term side effects. I felt like I wasn't going to have a long life. I resolved to live as well as possible in whatever time I had left, but I refused to make plans for anything more than about a year out. For several years at every CT scan I was sure this would be "the one" and they would find mets. But after about 3 years some optimism about my life span began to creep in. About 5 years out, "something" appeared in my lung on the CT scan and It turned out to be the adenocarcinoma. I was actually relieved that it was a new primary cancer rather than a met from the cervical cancer! I'm now 13 years out  and still NED on the cervical and almost 8 on the lung cancer (as well as 16 on a breast cancer). I no longer expect bad news, although I know recurrence is still possible. At times I'm amazed that I'm still up and moving around and I have a pretty good quality of life, even, at 78.  I hope you will do at least as well!  You too, Rikki, and don't spend all of your retirement savings!

Yay, Tom! I understand the issue of  now thinking you'll live longer than you thought you would. Before I was diagnosed with lung cancer (stage 1a garden variety adenocarcinoma), I had a Stage 3 rare and aggressive type of cervical cancer with a "dire prognosis" (that's in my medical record!) I had aggressive treatment, which led to a lot of late occurring and long term side effects. I felt like I wasn't going to have a long life. I resolved to live as well as possible in whatever time I had left, but I refused to make plans for anything more than about a year out. For several years at every CT scan I was sure this would be "the one" and they would find mets. But after about 3 years some optimism about my life span began to creep in. About 5 years out, "something" appeared in my lung on the CT scan and It turned out to be the adenocarcinoma. I was actually relieved that it was a new primary cancer rather than a met from the cervical cancer! I'm now 13 years out  and still NED on the cervical and almost 8 on the lung cancer (as well as 16 on a breast cancer). I no longer expect bad news, although I know recurrence is still possible. At times I'm amazed that I'm still up and moving around and I have a pretty good quality of life, even, at 78.  I hope you will do at least as well!  You too, Rikki, and don't spend all of your retirement savings!

Yay, Tom! I understand the issue of  now thinking you'll live longer than you thought you would. Before I was diagnosed with lung cancer (stage 1a garden variety adenocarcinoma), I had a Stage 3 rare and aggressive type of cervical cancer with a "dire prognosis" (that's in my medical record!) I had aggressive treatment, which led to a lot of late occurring and long term side effects. I felt like I wasn't going to have a long life. I resolved to live as well as possible in whatever time I had left, but I refused to make plans for anything more than about a year out. For several years at every CT scan I was sure this would be "the one" and they would find mets. But after about 3 years some optimism about my life span began to creep in. About 5 years out, "something" appeared in my lung on the CT scan and It turned out to be the adenocarcinoma. I was actually relieved that it was a new primary cancer rather than a met from the cervical cancer! I'm now 13 years out  and still NED on the cervical and almost 8 on the lung cancer (as well as 16 on a breast cancer). I no longer expect bad news, although I know recurrence is still possible. At times I'm amazed that I'm still up and moving around and I have a pretty good quality of life, even, at 78.  I hope you will do at least as well!  You too, Rikki, and don't spend all of your retirement savings!

Hi Stephanie and welcome here. Edive buddy is right that expecting blood levels to stay the same isn't realistic.  Neutrophils- white blood cells that fight infections- especially take a beating, My lung cancer was stage 1a and I didn't need chemo., but 12 years ago I had a different cancer that was stage 3 and aggressive. Chemo caused my neutrophil count to dip and the second time it went to zero, an emergency situation. I was given antibiotics to stop possible bacterial infections . After  subsequent infusions I had neupogen, given by injection, and it kept my neutrophils from crashing again.  I also had an infusion of packed red blood cells when anemia reached a dangerous level. My treatment was 12 years ago and I have been NED (no evidence of disease) since.
My point is that if blood levels of anything reach a dangerous level, there's usually some action that can be taken to remedy the situation- medication, biologicals, supplements, postponing your infusion until the level rises, etc. It usually isn't a reason to discontinue a regimen that's working.
Advanced cancer of any kind is life-threatening and treatment often needs to be aggressive to control it. So hang in there, talk to your oncologist about the significance of each level that's low, and what if anything needs to be done about it. Hang in there and I wish you a long and meaningful life.
Bridget O

Yay, Tom! I understand the issue of  now thinking you'll live longer than you thought you would. Before I was diagnosed with lung cancer (stage 1a garden variety adenocarcinoma), I had a Stage 3 rare and aggressive type of cervical cancer with a "dire prognosis" (that's in my medical record!) I had aggressive treatment, which led to a lot of late occurring and long term side effects. I felt like I wasn't going to have a long life. I resolved to live as well as possible in whatever time I had left, but I refused to make plans for anything more than about a year out. For several years at every CT scan I was sure this would be "the one" and they would find mets. But after about 3 years some optimism about my life span began to creep in. About 5 years out, "something" appeared in my lung on the CT scan and It turned out to be the adenocarcinoma. I was actually relieved that it was a new primary cancer rather than a met from the cervical cancer! I'm now 13 years out  and still NED on the cervical and almost 8 on the lung cancer (as well as 16 on a breast cancer). I no longer expect bad news, although I know recurrence is still possible. At times I'm amazed that I'm still up and moving around and I have a pretty good quality of life, even, at 78.  I hope you will do at least as well!  You too, Rikki, and don't spend all of your retirement savings!

i was diagnosed stage iv about 18 months ago - lungs, lymph nodes and spine
i've had no radiation
chemo is carboplatin and alimta
imuno is keytruda
after 6-8 months pet scans began to come back clear - carboplatin was discontinued
what amazed me was the treatments had few side effects - never had nausea - did not lose hair - no pain
if they opt for chemo, it might not be as bad as you think - and hopefully, effective 

Anthony,
Sorry to hear about your cancer, but glad you found us.  There are many others here like eDiveBuddy, who were diagnosed with advanced LC (lung cancer) and years later they are still here to share their story.  The truth is LC is not the automatic death sentence it once was.  Yes it is still the deadliest form of cancer and highly recurrent, but more work (curative, and control-based).  My LC was caught at Stage 1 and was treated surgically.  But there are folks here with many and varied diagnosis and journeys.  In the meantime I’d ike to share a blog with you that was written by one of our own members.  It is based on his receiving a diagnosis of Stage 3 over 20 years ago.  That Stage 3 then became Stage 4 and he went through many treatments and recurrences and only a couple of years ago he was pronounced cured.  He compiled a list of “10 Steps to Surviving Lung Cancer; by a Survivor” and it can be found here.  In addition, now is the time to learn as much as you can about your disease, diagnosis, and treatment.  We have a section called “Lung Cancer 101” and that is found on this page.  
So please keep coming back.  Ask questions, read other’s posts and learn all you can so you can manage this journey in a much better way.  I pray you’ll be on the site for a long time to come.
Lou

Yay, Tom! I understand the issue of  now thinking you'll live longer than you thought you would. Before I was diagnosed with lung cancer (stage 1a garden variety adenocarcinoma), I had a Stage 3 rare and aggressive type of cervical cancer with a "dire prognosis" (that's in my medical record!) I had aggressive treatment, which led to a lot of late occurring and long term side effects. I felt like I wasn't going to have a long life. I resolved to live as well as possible in whatever time I had left, but I refused to make plans for anything more than about a year out. For several years at every CT scan I was sure this would be "the one" and they would find mets. But after about 3 years some optimism about my life span began to creep in. About 5 years out, "something" appeared in my lung on the CT scan and It turned out to be the adenocarcinoma. I was actually relieved that it was a new primary cancer rather than a met from the cervical cancer! I'm now 13 years out  and still NED on the cervical and almost 8 on the lung cancer (as well as 16 on a breast cancer). I no longer expect bad news, although I know recurrence is still possible. At times I'm amazed that I'm still up and moving around and I have a pretty good quality of life, even, at 78.  I hope you will do at least as well!  You too, Rikki, and don't spend all of your retirement savings!

Yay, Tom! I understand the issue of  now thinking you'll live longer than you thought you would. Before I was diagnosed with lung cancer (stage 1a garden variety adenocarcinoma), I had a Stage 3 rare and aggressive type of cervical cancer with a "dire prognosis" (that's in my medical record!) I had aggressive treatment, which led to a lot of late occurring and long term side effects. I felt like I wasn't going to have a long life. I resolved to live as well as possible in whatever time I had left, but I refused to make plans for anything more than about a year out. For several years at every CT scan I was sure this would be "the one" and they would find mets. But after about 3 years some optimism about my life span began to creep in. About 5 years out, "something" appeared in my lung on the CT scan and It turned out to be the adenocarcinoma. I was actually relieved that it was a new primary cancer rather than a met from the cervical cancer! I'm now 13 years out  and still NED on the cervical and almost 8 on the lung cancer (as well as 16 on a breast cancer). I no longer expect bad news, although I know recurrence is still possible. At times I'm amazed that I'm still up and moving around and I have a pretty good quality of life, even, at 78.  I hope you will do at least as well!  You too, Rikki, and don't spend all of your retirement savings!