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Small Cell Lung Cancer: Let's connect

Lung Cancer | Last Active: Jul 18 1:50pm | Replies (233)

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@margot69

This gets more interesting. I am under the care of a local Onc. I did go to Stanford and saw Dr. Wakelee. She said she was going to present my case to the tumor board. I received this message from her yesterday.
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We reviewed your case at our tumor board yesterday afternoon. We actually believe this is large cell neuroendocrine cancer instead of small cell neuroendocrine cancer. The treatment remains the same, but that explains why your cancer has been less aggressive than most small cell cancers. I would still support you getting the carboplatin/etoside and then considering potential radiation later if there are minimal sites of disease. I would NOT suggest the prophylactic brain radiation. The immune therapies (keytruda or opdivo) are options either way as we discussed, but the concern of worsening your underlying autoimmune disease are still there so we have to be careful. One can never predict time very accurately so remember the ranges we discussed. I hope all goes well.
Warm regards,

So, looks like a new diagnosis with really no new prognosis and this seems to be even a more rare type. Anyone heard of this? I have not had time to research.

I started my Chemo yesterday. By IV., first given Zofran with steroids then the Cisplatin then the Etopicide. Was there for about 5 hours. They just left the IV in. Went back today for the Zofran and Etopicide. I have been taking a Xanax before my appts. That only took a couple of hours. Was doing ok and had some lunch and lay diwn fir a bit. Now, I am not feeling so well and took a Tigan for nausea, no appetite for dinner. I have another treatment tomorrow then 3 weeks off. Only the second treatment and not feeling well. Anyone have tgese issues with this treatment? I have only just started.
Any feedback on her newest findings?
Thanks

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Replies to "This gets more interesting. I am under the care of a local Onc. I did go..."

Very interesting @margot69. Your doctor's note was very nicely written I must say. Neuroendocrine cancer or tumors are a category of their own and can appear in various parts of the body. There is a Neuroendocrine Tumor (NETs) group here on Connect: https://connect.mayoclinic.org/group/neuroendocrine-tumors-nets/

I encourage you to introduce yourself to the NETs group here:
- Welcome to the NETs Group! Come say hi. https://connect.mayoclinic.org/discussion/welcome-to-our-new-group/

There are other members who have neuendocrine tumors of the lung and will share more with you.

I'm sorry to hear that you are feeling so poorly after chemo. Besides the chemo, it is such a long tiring day. I hope you're able to sleep okay. Thinking of you.

@margot- How wonderful that Dr. Wakelee was so thorough! I had cisplatin and it wasn't pleasant. An oncologist nurse advised me to get an anti-nausea prescription and take it as soon as you get home from chemo, and to take it round the clock for a few days. See what your Oncologist will give you!
Fatigue is one of the most common side effects of chemotherapy. Just go with it, Do what you can and don't do what you can't. Ask for help if you need it. Warm hugs! If you go to the Neuroendocrine cancer group please come backa nd visit and keep me up to date on how you are doing! Warm hugs