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Already on oxygen - diagnosed with DIPNECH: What happens next?

Neuroendocrine Tumors (NETs) | Last Active: Feb 4 6:28pm | Replies (23)
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@gprior

They are going to monitor the lower lobe as before, a CT every 6 months. I received the results of my last lobectomy, this time there were 2 large tumours that were g719a EGFR / KRAS mutations . I've never heard of this before. It seems the same is in the lower lobe. I see specialist again in 6 weeks as he has put me on an inhaler to see if it improves my breathing. Will keep you posted

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Replies to "They are going to monitor the lower lobe as before, a CT every 6 months. I..."
Zebra | @californiazebra | Jan 31 7:20pm

Thanks for the update. I do not have those mutations so we may have different types of neuroendocrine tumors which may require different treatment plans. I have the least aggressive type (typical carcinoids in addition to DIPNECH) fortunately so they are very slow growing. I hope the inhalers are helpful for you. 🥰

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