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I have stage 4 lung cancer. I survived stage 3 non Hopkins lymphoma. I was told my cancer is treatable, not curable. The cancer is in my right lung, pleura and bones. I have 40% of my normal lung capacity which was already compromised by other medical issues. I have scleroderma, a auto immune disease that affects the skin and connective tissue. I have it systemically, in my lungs and gi system. Because of my underlying diseases I am unable to do any radiation, take any immunotherapy meds and participate in any trials. I have had 3 of 4 chemo treatments, carboplatin, avastin and pemetrexed. After my 2nd round the PetScan showed some reduction of the cancer. After my 4th round we will repeat the scans. Then I go to “maintenance “, where they remove the carboplatin, the “big gun” and I go forward with treatments for every 3 weeks for the foreseeable future. I am really nervous about them taking away the carboplatin and just being on maintenance. I feel like I’d just be waiting for the cancer to increase. My Dr says the research has shown that the benefits don’t our the risks of continuing with the carboplatin. Last week a good friend of mine that is usually really positive called my cancer “terminal”. Hearing that freaked me out. I don’t think of myself as terminal even though I know it’s not curable. My mother died of lung cancer, she lasted 9 miserable months after diagnosis and a good friend of mine’s husband died of lung cancer, he lasted 2 years. I have not asked for a prognosis. I feel it’s still too early as I’m hopeful my next scan will show further reduction of the cancer. 
So now all I can think about is “terminal”. At what point are you terminal? Anyone on the same cocktail as I’m taking? How have others response to chemo been? Is there hope to lasting more then a couple of years? 

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Hi Karyn, 

I'm sorry your friend's comment was distressing for you. People mean well but sometimes the things they say are unintentionally hurtful or upsetting. I'm also sorry you are coping with so much. I'm also Stage 4 adenocarcinoma, but have no experience with the infusion combo you're experiencing.  

The  prognosis area of lung cancer has been turned on its head by recent results of research, so I have not found it beneficial to my mental health to pay attention to the survival stats. Not when I have friends in my local cancer group who have been living with Stage 4 lung cancer for 10, 12, 16 years, others who have lived for 10+ with one lung, etc. And these are people with active, meaningful lives. Terminal? Well, everyone is, when you get right down to it. We're just aware of it, more than the average person.

I'm not sure what your friend was getting at, but it seems that adopting a mindset that you're terminal is going to make you miserable. When people tell me I'm so brave or whatever else, I have a choice to buy in to their thinking or not. I think people say stuff like that because they're scared and on some level want to distance themselves from me. Last week, one person told me I had courage. We're good friends, so I could be frank. That was ridiculous, I told him, like I'm not going to do tests or have treatment plans? It doesn't take courage to do that, just common sense. What takes courage for me right now is to build a meaningful life within the parameters I currently have. So, what do I want? Yikes! In my book, that's a question that needs some courage to answer. It's certainly not one I expected at this point in my life. 

I'm glad you found us, Karyn. 

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Hi Karyn!

Of course there is hope, that is why we are all here. I will let others with more experience as to your particular type of cancer answer the big questions. I just popped in because I can relate to your feelings and the story you shared. I felt the same way, and all I could think about after my lung cancer diagnosis was my mom and dad, who both died from lung cancer. Mom opted for the treatment, dad did not.  Mind you, this was years ago, (28 yrs ago for mom and 15 for dad), and cancer treatment has come a long, long way since. Still, beginning treatment was the scariest thing I have ever done. But, as Karen L above said, what else is there? A fight has been brought to us, and fight we must. It is the ONLY option.

I also get the 'friends' and their good intentions yet sometimes stupid words. Also the 'look' some give you like you are already dead. They do not know any better, and I find talking to people who have or are actually going through the cancer and treatment is the most helpful, hopeful and informative way to go. They get it. Our friends, in spite of their good intentions, .. do not. I also rely heavily on my wonderful care team to answer questions. I've found that questions are very important, as is being your own advocate. Our busy medical teams sometimes forget to explain everything, and /or assume you already know or were told. Whatever the case, I hammer them with questions constantly.

I completed my first round of chemo last week. I'm also on daily radiation treatments. I made it through the worst of the chemo side effects and am feeling better today. I'm not sure what to expect, as I have been told the side effects get worse with each round, but forward is the only direction I can take.

Fight the fight, Karyn, and NEVER lose hope. I have recently met many folks with different types of so called 'terminal' cancer who have survived for years and years and are still fighting on and enjoying their lives. They have become my inspiration.

Everyone here has your back, and we will be with you every step of the way.

Peace and love, 

Laural

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Karyn,

I know only 2 things for certain--I was born and I will die. When, I don't know. So I am "terminal" also. The only uncertainty in my certain knowledge is when. Eighteen years ago, when diagnosed, I had a lifespan projection of around 6 months!

You mention hope and I recall the character Andy Dufresne's pronouncement in the movie Shawshank Redemption--"hope is a good thing and good things never die." Hope indeed is a good thing, and I hope your next scan does shows further reduction--heck--I hope for elimination. I've thought a lot about hope. Here and here are some of my musings on the topic.

I understand your reluctance to discard carboplatin but as you say, it is powerful stuff and over time can do more harm than good. Maintenance therapy is a pretty established concept in lung cancer treatment today. Moreover, I bet it is paired with frequent scans to keep an eye on things. And, if necessary, your doctor can always bring out the big gun to deal with a recurrence.

Welcome here by the way. 

Stay the course.

Tom

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Hi Karyn and welcome! You have a lot going on! I agree with those who posted above that "terminal" is pretty meaningless, aside from being discouraging. If you hang out on these forums you'll find a lot of people who have or have had late stage lung cancer who are alive and kicking after a lot of years. I have had 3 primary cancers. My lung cancer was Stage 1a and needed only surgery and I have no evidence of disease after  6 years. My second cancer was a rare and aggressive gynecologic cancer, Stage 3. The prognosis, according to my oncologist, was "dismal". She didn't say that to me but she did write it in my chart. This was in 2011 and I've been NED on that one since my treatment ended in 2011. So I know it's important not to take discouraging words to heart. I wish you all the best.

Bridget O

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