I have health insurance again, as of five days ago. Trial back on track with scans last week and labs and a review tomorrow.
However, my relief at regaining coverage is tempered by some unaccustomed anxiety.
For more than a month now my upper lobe—all that remains on the left side—has been making a crackling noise when I exhale. I know this noise and there’s nothing good about it. In addition, I have experienced an occasional cough and some shortness of breath as well as some streaking of blood in my sputum.
Best case scenario, this is an infection. But the fact that two rounds of antibiotics have not knocked it down is not encouraging.
This wouldn’t be my first time at the rodeo but damn, I’ve gotten nicely accustomed to an easier ride. Of note, lorlatinib was just granted FDA approval. This is the third time I’ve been in a first in human trial where the experimental therapeutic has gotten approved for prescribed use. A good feeling, that.
And now for a stable scan.
Sucks. Good luck.
Okay, so the prayers start NOW! Of course, I’m the guy that believes God is a black woman with an incredible sense of humor, so you can take my prayers (sometimes) with a giggle pill! But I do love the sound of her laughter – in my head she sounds just lie a girl I had the biggest crush on in high school! And I’ve heard her laugh so often, and at such odd times, that I’ve grown accustomed to not counting on the obvious. But that’s a whole different set of stories. I do pray, and I will keep you in my prayers. She just responds in weird ways sometimes!
Sending you wishes for a stable scan!
Yes, here’s to stable scan✊🏼❤️
Sending a hug my friend.
On Mon, Nov 5, 2018 at 8:25 PM life and breath: outliving lung cancer wrote:
> linnea11 posted: “I have health insurance again, as of five days ago. > Trial back on track with scans last week and labs and a review tomorrow. > However, my relief at regaining coverage is tempered by some unaccustomed > anxiety. For more than a month now my upper lobe—all” >
We met at Hope Summit in Washington DC and I took a picture with you for my sister who first found your blog after I was diagnosed with ALK+. It was a joy to hang out with you there. I am so glad your insurance has come through. I hope you realize what an inspiration you are to others. You are part of why I am on such an effective medication today! Sending hope and hugs your way. Fingers crossed—
Fingers and toes crossed!
Hoping the best for you as I do all my ALK comrades.
Bummer, Woman! I so know how you feel—I too have that crackling sound now on occasion in upper left lobe.y onc thinks it’s cancer/thickening of the pleura so the visceral pleura is rubbing against the parietal pleura. Or something like that. I am now scheduled to get cyberknife next week in hopes of getting rid of it. Still getting Keytruda and Alimta as well.
We just have to plow on…and not get battle fatigue. You are one strong cookie and you’ve got this! Keep us posted, my friend. ❤️
Hoping for the best for you as always
Sending you massive positivity!!!
Very best of luck with scan review x
Thank you for sharing. Sending prayers your way for good scans.
Hugs and good thoughts with you and a huge thanks for all you’ve done to keep us alive 🙂
Best wishes Linnea. And thank you so much for the contributions you’ve made for developing such landmark drugs! It’s not easy or pleasant. Peter benefitted immensely from Loralatinib. Thank you!! He participated in early dosing trials for TPX & Cobi-Alectinib. The TPX dosage was too low to be effective and the Cobi-Alectinib was not much better. But, I was so proud of him for doing what he could to contribute to future ALK treatments. He was a real trooper. Never complained.
My best too Dr. Shaw. I miss her so much.
Will be on tenterhooks until the results of the scan come in. And we don’t like those tenterhooks! Pulling for you big time. xoxoxo
Fingers crossed for you. Hoping for either something fixable or something so slow you can coast to yet another miracle breakthrough treatment.
P.S., I’ve had those crackles for years now, plus so much fluid it spills up my windpipe if I bend over after letting it accumulate.
Good luck on your scan and thank you for your contribution. You are my hero.