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My update after first scans


hillham

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So, I was diagnosed at the end of April with nsclc stage 3b, with a Ros-1 mutation. I started with four rounds of cisplatin/pemetrexid every three weeks, plus 30 radiation treatments over a large area with "curative intent." I tolerated everything quite well with few side effects, although I did develop painful esophagitis that made it hard to swallow for about 7-10 days. Then it cleared up. I just went in for a brain MRI and CT scan with contrast. The doctor declared me NED! However, there was a new nodule, 4mm, which the doctor is watching, but thinks is nothing. Oh, please be nothing! 

My doctor wants me to begin targeted therapy as a precaution beginning in September. I'll start with entrectanib, which has side effects that make me feel very wary, but I'm inclined to try it since it is a more agressive approach. 

I feel good. I'm able to go out for my usual 30-40 runs and exercise. My tastebuds are returning, and I'm starting to feel like a "normal" person again. I don't know what the impact of the drug will be. 

Anyway, I thought I'd share. Hoping for the best for myself and all of you!

KH

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Hillham,

NED is always good.  I can understand waiting to see what happens on a nodule can be a real nerve bender, but stay positive.  You've come so far and you should be celebrating so please don't let a nodule steal your joy.  If it turns out to be something else then you will deal with it with the same courage you showed going through your protocol. 

I'm awaiting scan results myself (scanned yesterday) and I see them posted on the patient portal, but have been terrible at interpretation so I guess I'll wait until Monday to see if my pulmonologist calls.  But, I try to keep focused on the fact that my last 4 scans have been NED and that I'll deal with bad news if I have to.

So, enjoy your weekend and let the doctor worry about the nodule.

Lou

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Glad to hear your Mum is doing well "catlady"! And yes, NED is always good. I'm in a celebratory mood, and trying not to let the nodule steal my joy, as you say Lou. Good advice!  They did talk about various options if it does turn out to be something. When I told my mom about the results she asked if she could start calling me by the name Ned. That made me laugh! 

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That’s wonderful news!  I’ve had a 4mm “something” that hasn’t done anything for three years now, the radiologists finally concluded it was a “normal” finding.  It’s time to breath a sigh of relief and carry on! 
 

@Judy M2 totally sucks to have to wait that long!   & @LouT, your family & fellow prayer warriors are always with you! 

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Judy, I had both scans on Wednesday and the doctor called me Wednesday night. I really appreciated that! 

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Michelle, I remember reading that on one of your posts. I'm hoping my "something" is "nothing." The doc thinks it's inflammation since it's near an airway. At least that's what he said.

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Yes, that’s right.  For about a year and a half the radiologist disagreed with the oncologist over scar tissue, then it was finally NED. What I learned was the oncologist’s interpretation is the one that counts.   I know you’ll have a fabulous weekend! 

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