Stage II Large Cell Neuroendocrine Carcinoma. Start chemo the 29th, don’t know what to expect.

[mark61]

Hello, my name is Mark and I’m 60 years old. Earlier this month I had my right middle lobe removed. It had a 1.8cm tumor: Large Cell Neuroendocrine Carcinoma. It had spread to 3 of 17 lymph nodes. I have my first session of Chemo on the 29th (Cisplatin & Pemetrexed) 4 sessions over a 3 month period and then immunotherapy. I’m a little stressed to say the least. I guess chemo affects everyone differently?

[LouT]

Mark,

Sorry you have to be here, but glad you found us.  My treatment was a lobectomy only so I never had chemo, but others here have and no doubt you'll be hearing from them soon.  In the meantime take a look at a blog written by one of our Senior Members entitled, "10 Steps to Surviving Lung Cancer; by a Survivor" it can be found here.  It contains great information that I personally found very helpful.

You are correct that chemo can affect so many differently.  Some folks here seem to tolerate it very well and others may suffer more serious side-effects.  But one thing I've learned from reading their posts is that you should get "Palliative Care" you can speak to your physician about it.  It can be very helpful to keep you as comfortable as possible while going through the adjuvant treatment you describe.

Stay in touch here and ask any questions you may have.  You'll soon be hearing from the rest of our Lungevity Family.

Lou

[mark61]

Thanks much, Lou.

[BridgetO]

Hi Mark and welcome!  I had a lower right lobectomy  5 years ago, but my cancer was a "garden variety" adenocarcinoma, stage 1a and I didn't need treatment beyond surgery.  I know very little about neuroendocrine, which I think is fairly rare. There was somebody on these forums not to long ago who had it, but I can't remember who it was. I hope they see your headline and pop on here.  I wish you all the best and I encourage you to keep posting.

Bridget O

[mark61]

Thanks, Bridget.

[LexieCat]

12 hours ago, BridgetO said:

I know very little about neuroendocrine, which I think is fairly rare. There was somebody on these forums not to long ago who had it, but I can't remember who it was.

Pretty sure it was @TJM (Tom).

[Mamma Om]

Hi Mark, sorry to hear your lung cancer story. Hopefully I can give you some encouragement. After having breast cancers in 2001 and 2012, thyroid cancer in 2015, I was diagnosed with lung cancer in 2018. After a lung biopsy, small cell adenocarcinoma was diagnosed; after PET no spread to lymph nodes or other places. Surgery to remove the lower right lobe was done, and the pathologist noted a second tumor that had not been seen by CT or PET. It was a small neuroendocrine carcinoid, and I was initially scheduled for immediate chemo and radiation. However, just days before my first chemo my Oncologist submitted the tumor to the weekly Tumor Board. They all decided that this neuroendocrine carcinoid was not a Large cell tumor, and would not require chemo or radiation. In fact, just removing it was all the treatment needed.

As others have said, neuroendocrine tumors are rare in the lungs. They are usually found in the stomach or other parts of the digestive system. Are you sure they said carcinoma and not carcinoid?  Ask your oncologist which it is and to explain the difference. I think the reason you will need chemo and radiation is because it had spread. I had chemo and radiation 20 years ago so I am sure it is much different now. Anyway, this is a great group, and will help you out when you need information, support, encouragement, resources, and more. Try to be encouraged by all the survivor stories on here, including me, all these cancers and here I am, just celebrated my 78th B'Day! 

[mark61]

Thank you, Mommo Om. Yes, they said carcinoma. I really don’t know what “spread to the lymph nodes” means… they said the lymph nodes it spread to were in the part of the lung that was removed. Does it mean it’s in my blood? 
Thanks and Happy Birthday to you!

[Mamma Om]

Mark, generally "spread" means some cancer cells left the original tumor and migrated to another part of the body. It can be to an organ, the brain, lymph nodes, etc. Sounds like yours only went close by, to the lymph nodes in that part of the lung. That's the good news. But they could spread further, even after surgical removal, and could show up later. Only one or two stray cells can be a problem. That's why they do chemo and radiation, to find and kill any stray cells. I think the cancer travels in the lymph fluid, not the blood, but I'd have to look that up. Stay positive, you can beat this!

 

[mark61]

Thanks, Momma Om. I ‘m trying to be positive and block my fears but it’s sorta overwhelming right now… the uncertainty.

[Judy M2]

Mark, two years ago I was diagnosed with Stage IIIB garden variety NSC adenocarcinoma with spread to my lymph nodes. I had 6x weekly chemo (carboplatin/taxol) and 30x chest radiation. My chemo drugs were different from yours.

Some people getting chemo have fatigue as a side effect, some have nausea. My biggest side effect was hair loss and constipation. I don't recall being nauseous as a side effect. Radiation gave me fatigue and esophagitis (because of the location of the lymph nodes being treated). 

Your white blood cell counts may drop during chemo, but they will draw labs at the start of each infusion day. 

I hope your oncologist has scheduled a "chemo teach" session for you, where you can ask whatever questions you want. 

I also hope you are getting a port implanted to save your veins. A port can usually be used the same day it's implanted. 

Chemo infusions are boring, so bring something to read and water/snacks, listen to music and take a nice nap when the Benadryl hits. And don't forget a blanket! I actually felt my best on chemo infusion days. We used to stop at Wendy's on the way home from chemo as a reward. 

I don't have experience with immunotherapy, I'm on a targeted therapy for my particular gene mutation. 

All of my side effects from chemo and radiation were temporary, and aside from skin rashes common with my targeted therapy, I am NED (No Evidence of Disease), doing well today and living a normal life. 

Best of luck, and I hope any side effects are minimal. 

[mark61]

Thank you Judy, that’s valuable information. I’m getting some of those things together now for my first session tomorrow.

[BridgetO]

Hi again Mark,  LexieCat is right, as usual! TJM (Tom) has/had neuroendocrine, and G.A.M. (Glenn) . I've private messaged both of them to see if they'd pop on here.

 

[mark61]

Thank you, Bridget! It would be great to communicate with them.