I have been feeling well for the past week. My cough has resolved, my energy is up and the chills are gone. All good signs.
This past Monday I underwent the bronchoscopy. Quite uneventful aside from the nasty numbing stuff they squirt up your nose and down your throat prior to the exam. “This is going to feel like you’re drowning” counseled the attending nurse with no apparent irony. And it did.
On Thursday I was back in Boston for my chest CT scan. Although I’d been given a bye on barium for the past two years of the crizotinib trial, I am once again required to drink two ‘milkshakes’. As I’ve explained in some previous detail, I am oblivious to most of the discomforts involved in my day to day medical care. You don’t even want to know how many times I get jabbed with a needle. However, I have never liked putting something in my mouth that I don’t want there. I am, in fact, almost phobic in this regard. Oral contrast is tough for me, and hopefully I can once again talk upper management out of the necessity of such an (onerous) detail.
I had taken the bus in, and David picked me up at the hospital after my exam and we continued on to Randolph, where my oncologist, Dr. Alice Shaw, was being honored by the American Lung Association. Also in attendance were three of Alice’s other patients, including Chris and his wife Karen, pictured on the rather dramatic staircase of the venue. They have an adorable daughter who is just two, and Chris has done quite well on crizotinib. I wish him many more years of success.
Chris and Karen
Bright and early yesterday morning, Alice called and said she had reviewed the scans and that they looked really good, and as well the bronchoscopy was completely negative for any findings. Some hours later she forwarded the CT report, which frankly sounds even more positive than what I’d expected from her description. It reads:
FINDINGS:
Lines/tubes: None. Lungs and Airways: There is improved consolidation in the left upper lobe and lingula with residual ground-glass opacities, which had been previously chronic and progressive and are considerably improved from 8/31/2011, consistent with improvement in lymphangitic carcinomatosis.
There is a stable 3-mm nodule along the minor fissure. The surrounding smaller nodules have resolved. Pleura: There is a stable small left pleural effusion.
Heart and mediastinum: The thyroid gland is normal. No significant mediastinal, hilar or axillary lymphadenopathy is seen. The heart and pericardium are within normal limits. There is mild pericardial thickening, which appears more prominent compared to 8/31/2011.
IMPRESSION:
History of non-small cell lung cancer status post left lower lobectomy. Improvement in lymphangitic tumor spread in the left lung. Stable indeterminate 3-mm nodule along the minor fissure. Slightly increased mild pericardial thickening.
I like how many times improved or a variation thereof is used in the first paragraph (three), and the addition of considerably is even better. Stable appears twice in the second paragraph. And in IMPRESSIONS, the key words are improvement, stable, and slightly increased. This is a very good, considerably improved, report. Yippee!
And now for some definitions of less than familiar terms:
lymphangitic carcinomatosis: A condition in which cancer cells spread from the original (primary) tumor and invade lymph vessels (thin tubes that carry lymph and white blood cells through the body’s lymph system).
This is the definition from the National Cancer Institutes online dictionary. From Medscape reference we get this explanation: The lungs are one of the most common targets for metastatic disease. Most pulmonary metastases are nodular, but a significant minority is interstitial. Lymphangitic carcinomatosis (LC) refers to the diffuse infiltration and obstruction of pulmonary parenchymal lymphatic channels by tumor.
Interpretation? I believe it is simply another way to describe metastatic lung cancer.
I also looked up the significance off mild pericardial thickening (the pericardium is the membranous sac enclosing the heart), and will discuss it with Alice before I attempt to interpret this finding.
Bottom line; it is a very good report. I have to wonder if I really did have an infection that the latest course of levaquin vanquished. Whatever the underlying cause of my initial malaise as well as the less than stellar PET scan, it is now evident that the LDK378 is having it’s way with my cancer. I’m tripping over myself with gratitude, and well, excitement. The personal impact is obvious, but I’m focusing on the big picture as well; perhaps LDK378 will prove to be yet another viable treatment option for those who harbor an ALK mutation. That would be really be something.
life and breath: outliving lung cancer 
My bright light – what a lovely way to start my Saturday morning! Let there be art, let there be gratitude, and let there be celebration!
Stephanie, all those things!
Linnea
Linnea!! I am so elated to read your post!! Wonderful news.. I hope to see you soon. perhaps at Shine a Light?
Julia, I will be there, and I understand you will be speaking. I am looking forward to it (and to seeing you).
Linnea
Dearest Linnea,
Blessings on such joyful news!
Tracy
Tracy, thank you!
Linnea
Excellent news. We are seeing more and more of these stories each day. My wife also got an excellent PET report for her NSCLC. We are on the way to defeating lung cancer!
Michael, glad to hear of your wife’s excellent PET scan as well.
Linnea
YIPPEE!!!!!!!!!!!
Yeah!!!!!!!!!!!
tears in my eyes (and you know they don’t tear up easily ) and my heart is beating double time with happiness!!!
I don’t know Amy; you struck me as the weepy type 🙂 Love, Linnea
Oh, what wonderful news! What wonderful, happy, bright and brightening, cool, heartening, relief-inducing, rooftop-yelling news. (BTW, this time, your enthusiasm frightens no-one, hee hee). YIPPEE!
Cristina! Your enthusiastic use of verbal modifiers feels almost like an invective (in all the best ways possible)!!! You, BTW, are fearless. Love, Linnea
What wonderful news Linnea! So happy for you!!!
Sharon, thanks so much!
Linnea
Hi Linnea- I am so thrilled for you that I am out of words to describe the feeling. Wonderful wonderful wonderful.
Best always,
Joan
Joan, wonderful works 🙂
Linnea
ah, such sweet words! So happy to hear this good news Linnea ~ and as you say, perhaps good news for others as well. Sending love
Lorraine, as our personal victories are almost all temporal, we have to think of each (as well as our losses) as contributing to knowledge and experience in this cause. We are in this together.
Love, L
I’m so happy to read your news,Linnea!!!
So many positive words!! You help me be hopeful!!
Laurie, hope is good!
Linnea
yes yes yes! ja ja ja ja JAAAAAAAAAAAAAA!
I’m so happy – for you, for me, for everyone!
It’s time for strong hugs again, joyful ones!
Anja
Anja, I want to cash in on one of those hugs in person–we are due (but I am patient) for a long walk/talk. Love, Linnea
Great news Linnea! you give everyone following in your footsteps hope. Hopefully this trial will make its way to Australia. so happy for you and your family. Richelle xx
Richelle, if the trial continues to show positive responses, it is probably only a matter of time.
Best, Linnea
Oh Hurray for you!! This is great! A toast to more rocks across the river to jump on! And as a fellow trial participant (not that trial, but trials nonetheless), thank you for being brave and enthusiastic about taking the plunge again and again. I’m looking for my next trial (#3, or 4, actually) but am so heartened by your news.
Yeah, I hate that barium too…esp. the banana flavor. Yuck!
Cheers, Jazz
Jazz, (fellow trial veteran), sounds as if you’ve jumped in quite a few times. good luck in finding your next, and avoid the banana.
Linnea
Whoa! This is great news. Given your symptoms of late i am surprised–but pleasantly so. My husband (Stage IV BAC/adeno) with bone mets is about to finish his latest brutal chemo (Taxotere, Navelbine, Cisplatin, Gemzar, and Erbitux) We go for scans the first week in November. Praying for news as good as yours.
Cynthia, I was getting a little worried myself. But then I started to feel better, and I couldn’t help but get my hopes up. Now I’m crossing my fingers that this treatment works a little more magic, and does so for a while to come.
Linnea
I am SO excited to hear your awesome news. Fabulous news!
I had to drink that nasty barium stuff too and I ditto your comments!!! Blessings to you and your family! You remain in our prayers.
Carol Ann, thank you. I know you are no stranger to these journeys.
Linnea
I am ecstatic with you and for you! For your gift of sharing you are giving more to the cause than can ever be expressed in word…your a light to show the way…thank-you for who you are…
Gwen, thanks for joining me–the journey is always more meaningful when you can share it.
Linnea
Lynnea, wonderful news. So happy for you, David and family.
Kathleen, yes, it is good news rather a long time coming.
Linnea
Great News Linnea!!
Congrats! stay positive!
Wonderful news Linnea! I’m so happy for you! Thank you for sharing with all of us going through similar journeys. As Gwen posted, you are a light, shining a way for the rest of us behind you.
Lisa
All I can say is Yippi whoooo hooooo so happy for you .
Annie, yes yes yes and thank you!
Linnea