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How my sister has been doing


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I've been updating my signature line. But in response to Katie's request for folks to post and to spread some hope, maybe I'll make a post specific for it.

Kelly had her last scan in April. At that point, she was nearly 24 months from diagnosis, putting her into the right hand of the 'median survival' bell curve. So when she started coughing again, and her voice was getting gravely - well, I began to panic. She had been on Tarceva at that point for about 14 months (at a dose of 50 mg for 6 of those months) but at the 4 months into it stage she also underwent cyberknife treatment to the tumor.

I was on pins and needles waiting for Kelly to make an appointment to see her Dr to get the scan results. I already planned my trip home, rather certain that I would be needed to join in the conversation of where to go next.

Imagine my shock and sheer joy when I got an email from her with the report attached. (Don't ask me how she got them to fax it to her before she saw the Dr.) I read the words "the area of hypermetabolic activity previously noted is not visualized today." I swear, I almost passed out in my office. I responded to her email saying - this was SO not what I was expecting. She responded - can I do the happy dance yet? :)

Now the report showed uptake in her tonsil, but the ENT has been doing some tests and truly does not think this is a real finding. He thinks it may have been a swallow at the right time, causing the muscle to fire, and being caught as uptake that way. He thinks her cough is likely reflux related. It certainly isn't due to the tumor, and nothing new was found.

Her Dr and I are both in the "cautiously optimistic" phase. Kelly has had her scans at both UPMC and Allegheny General, due to her onc at one place and the cyberknife guys at the other. So we are looking at different machines etc. So the Dr is waiting for another scan before making any conclusions. Next scan 4 months later, so sometime in August.

Since Kelly will yet again be with her 'cycling and running team' at the Livestrong Challenge in Philly, I'm kinda hoping we scan right after the challenge rather than before. Because no matter how good the previous scan was, the worry-wort in me always wins.

Last year at the Challenge she was in the midst of a horrid Tarceva toxicity, and was really not feeling well. Now, well she has some knee pain due to Lyrica (how wrong that a pain med is causing pain) that may keep her from walking the 5K with our brother. But other than that, she's feeling pretty darn good and is really looking forward to our weekend in Philly.

So - just wanted to say - you just never know. We aren't naive, we know the other shoe may drop. But here she is 26 months since diagnosis and she has not yet had a bad scan. Even she doesn't realize how amazing that is. And after first line chemo/radiation didn't stop the uptake in the tumor, I never expected to see a scan report saying there was no uptake seen, not this far out. I'll feel better when I see another scan that says that. :) I can't help but think that our pursuit of cyberknife made a difference here. Apparently her hospital is going to be getting the equipment too, so her thoracic surgeon had all sorts of questions about the fiducial implant the last time she saw him. She's like their little guinea pig I think. And how can her dr look at her and not think - maybe I have other patients who should look into this.

I hope this helps some folks out there. To tie in with another thread - one could argue that Kelly was no longer being treated with curative intent after first line didn't wipe it out and the surgery failed. But look at her right now. Not so bad. We learn to live in the here and now. When folks ask me how we are doing, I've taken to responding - right here, at this moment right now, we are doing really well. :)

So well that Kelly is following up her trip to Paris with me and our other sister, with another one this fall with her husband and our cousin and her husband. GO KELLY!

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I have been wondering about you two and so glad I find out GOOD news!!! We sure need that around here these days!!!

Let us know how the walk goes and yes, pics of Paris would be WONDERFUL!!! Give Kelly a HUGE hug from me!!!

Hugs - Patti B.

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Absolutely GO KELLY GO! Your sister sounds like an amazing woman and your love and admiration for her shine through in your post.

It is so awesome to read her story and I will be praying for continued good scans! Thanks so much for the update.


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