Is there some fresh way of saying ‘It’s been a challenging time?”
No, probably not. And besides, challenging is a euphemism; a gentled version of what I wish to convey.
It’s been a difficult year, and the year before that as well. Adjusting to life alone, the continued progression of my lung cancer, a short stint on Xalkori, and then at long last admittance to the PF-06463922 trial. But it has not been without wonder.
About that trial…
I went in with low expectations, as my second secondary acquired mutation (G1202R) is highly resistant to all ALK inhibitors, although results in the lab indicated that my cancer could still respond at higher doses. I entered in the third cohort, at a dose of 75 mg. I was delighted when my cough began to abate almost immediately. But then four days after regular dosing started, I began to experience marked shortness of breath and the sensation that something was caught in my windpipe. I was coughing a lot and some of it was streaked with blood. The following morning there was a small clot of blood in my sputum, but my shortness of breath had abated. However, upon awakening the next day I coughed up yet another small clot. Hemoptysis is one of those things you just can’t ignore, so I sent a text message to Dr. Shaw, who was away at ASCO.
While waiting for a response, I received the phone call from my stepfather Jim telling me that my mother had passed away.
And that phone call was followed by one from a member of the clinical trial team, telling me that I’d been scheduled for an urgent CT scan, in order to rule out a blood clot or pulmonary embolism.
Fortunately my daughter Jemesii had the day off and pretty much insisted on meeting me at the hospital. I was going on adrenalin at this point and don’t know what I would have done without her. In prep I blew two IV’s for contrast (these veins are getting tired) and ended up having a vasovagal response (never happens to me) so I earned some time out in the recliner with some intravenous saline. And then after the scan wrapped up Jemesii and I headed over to the Termeer Center for the results.
And this is when things got really weird. The attending physician said I had neither an embolism or a clot. “How about cancer?” I asked. “Is that all gone?”
“Well, no…but…” she said, and then read from the report:
Lungs and Airways: Status post left lower lobectomy. A mixed
attenuation lesion in the lower portion of the remaining left upper
lung is significantly smaller than on the prior exam now measuring 2
cm x 1 cm x 3.2 cm significantly smaller than on the prior exam where
it measured approximately 8 x 7 cm in diameter. A small right upper
lobe mixed attenuation lesion (series 4, image 330) measures 6 x 7 mm
minimally decreased from prior measurement of 7 x 9 mm. 4 mm region
in the left upper lobe seen on series 4, image 339 is not
significantly changed. A nodule in the right upper lobe seen on
current examination (series 4, image 314) and on prior examination
on 66, image 155 now measures 4 mm in diameter down from 6 mm. And
unchanged region of atelectasis is present in the left upper lung
near the left hemidiaphragm. Additional nodules. Similar in size to
prior exam. No new nodules are seen. There is no evidence of new
pneumonia or pulmonary edema.
I had begun regular dosing six days prior and an 8 x 7 cm chunk of tumor had melted away to a mere shadow of itself. It was just unbelievable.
Stunned, Jemesii and I decided that a good meal and an even better glass of wine was in order. We raised a toast in honor of my mom. And then we raised another to the future.
Fabulous news for a particularly valiant warrior! Angela
Thank you Angela!
This is wonderful news! I am so very happy for you.
It is good news–thank you Renee!
Glad to hear you’re experiencing success on yet another clinical trial! You deserve to get good news and celebrate on a regular basis.
Oh I do—-celebrate. Daily!
Wine Linnea? Wine is for ordinary days. It should have been champagne!
You’re right—it should’ve been. I don’t get to drink very often these days so when I do, it should be better than good!
Wow! That is quite the response! Yay for you. I’m with Beryl, though. I would have sprung for the champagne.
very very happy to hear this and lots of love to you and to your family!
Thank you Gwendolyn!
Man, that sounded like a stressful day. Glad you have your wonderful daughter there. Mike and I hope to get into the PF-06463922 trial somehow and we’re very encouraged by your results!
Emily, it should be considered as encouraging news for all ALK-ers, mine being the most treatment resistant mutation.
Isn’t it wonderful to get surprising great results. Well, you deserve them. We all need a little positivity and you just got a whole bunch. Congratulations.
Thank you Roni. I was stunned/confused/devastated/happy all in one day.
This brought a tear to my eye. Really.
Thank you for doing the trial & for helping others along the way.
You are an angel.
And keep fighting.
And giving hope.
YOU are amazing!
Thank you Georgann. And Fierce is one of my favorite words 🙂
Your strength never ceases to amaze me!
Blessings to you!
Thank you Tracy!
Love this news! Susan
Me too 🙂
The road to good news was so squiggly, but I’m so glad to hear your good news. My condolences in the passing of your mother. At this time, I’m sending you all the good karma I can spare.
That is the most AWESOME news!! SO sorry to hear about your mom, but REALLY encouraged by the great news! Thanks for sharing!
Luna, I love your squiggly comment (just right). Thank you as well for the condolences and the karma is appreciated.
Giving us all hope for the future. Glad to hear this.
For some reason, I was waiting for the other shoe to drop. And there was no other shoe!!! YAY!!!!
Tracey, you never know, do you. So glad it didn’t.
Oh, Kiddo, that was a month of nightmare rolled into one day. I think it called for Bubbles. Again, I’m admiring your strength. Of course your daughter insisted on being with you, we want and need to be beside the ones we love. Wish I could help in some way, too. Hedy
Hedy, you do help-just by being there (still!). xo
how ‘ out you lady…sending you warm thoughts and prayers…love ya mean it, Donna from Texas
Thank you Donna!
That sounds like one excellent CT report. I hope the next is even better, and that you’ll be allowed to move up to a higher dose once other patients have shown a safe higher one.
Craig, we’ve already spoken so you know the scoop. Hoping for continued stability!
Congrats on your test results – awesome! Good luck as you travel down this path. CraigB
Thank you Craig!
Wow Linnea, that is such fabulous news in the midst of all life challenges! I’m so happy for you, keep enjoying the wine and the love!
Anja! I have been thinking of you—remembering that fantastic day on the archipelago. One of my favorite ever. Hugs back!
❤ ❤ ❤
Right back at ya!
Oh, Linnea!! Thank God! I am so happy to hear this!
Thank you Stephanie—I am so happy as well.
Exceptional news for an exceptional person. And I agree, your daughter is beautiful.
Wow, Linnea, amazing! So good to hear from you and that it is such incredible news.
Michele, it is incredible. Thank you.
Talk about an array of mixed emotions….the sad loss and the happy news. Not easy. But, good news and a better future. Thank goodness for your daughter and she is beautiful.
Cheryl, it was a truly bizarre day. The lowest of lows and then the highest of high. Almost incomprehensible.
GREAT NEWS! Congratulations from a follower in Colorado.
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Thank you Donna!
Linnea, first, I’m sorry to hear of the passing of your mom. But your CT scan results are very impressive, more so with the changed mutation. You are opening doors and setting new precedents in the medical world. Your mom would be proud of you, as are the people here who have read your story.
Thanks Dave. That mutation certainly had me worried, and I am delighted by the results.
So good meeting you in Boston and looking so well …. Keep up the wonderful fight
Thank you Simone—it was good to meet you as well!
Sorry about your mudder but, ecstatic about the clinical picture!
Glad to see you and appreciate Pegs’ referral since my eternal banishment
G—banishment suits you (joking, of course but I suppose it was inevitable). And thank you—I take all reprieves with great gladness!
I’ve just discovered your blog! I’d like to say congratulations! So very happy you are responding to treatment. My mom was diagnosed with stage IV lung cancer just a few weeks ago. She has started treatment on Xalkori for her genetic mutation of ROS1. She also has a catheter inserted into her Plura lining. If possible I would really like to talk to you about your journey, we are in uncharted territory and are trying to get used to this new way of life. Any advice/encouragement would really really help us. Thank you!
We’re rare, but there’s a number of us ROS1’ers participating in this long-running discussion for people on ALK &/or ROS1inhibiters (including me):
I also met about 8 of them in person at the Boston event hosted by CancerGRACE.org for EGFR’ers, ALK’ies, and ROS1’ers earlier this month.
Craig in PA
Lulu, good luck to your mom and I would be happy to talk to you.
HI Linnea…You give me such courage, dealing with my own clinical trial..
I’m so glad to read this report !! You are a warrior for sure!..
Come for another sail! boat is still in the water!
sending hugs, Laurie
Laurie, sorry for the silence (that was me on the bench!!!)—I will be in touch soon!
Wow such a super positive outcome. You deserve it. Keep fighting the good fight
Simone, I shall. And thank you.
Congratulations on the great CT scan report. I hope it continues to shrink! Great news for the Pfizer PF06463922 clinical trial! You are still a trailblazer for us!
Thank you Sharon. The (known) path is getting longer! It is great news for those with ALK mutations.
Linnea, So moved by your good result … You are inspiring not only people who are fighting with cancer bot also those who are in good health condition…. Leart you are in 75 mg cohort, May I ask you what regular dose refer to? Thank you! Bless you!
Jun, there is no regular dose yet, as I am in the dose escalation phase of this clinical trial. They are looking for the MDT, or maximum tolerable dose. My dose of 75 mg was part of the third cohort—the trial opened at 5mg, went to 25, and then up to 75. Hope that helps.
Hi Linnea- just chiming in with the other peanuts in the gallery. That is such great news, keep it coming! And what a beautiful photo of beautiful Jemesii.
Thank you Beautiful Joan!
oh thanks ❤
You’re an OLYMPIAN! The dictionary defines this as: “incomparably superior”! Wow. Wow. Wow. What a fantastic story, made more fantastic because it is TRUE! We are all feeling OLYMPIC HAPPY for you and wish you many more happy’s —
Ali Petri (Tikka)
Ali, I always wanted to be an Olympian; thank you 🙂
Sorry to hear about your loss and I am hoping for the best on your journey. – Howard Long
Thank you Howard.
I’m sorry I never commented on this one mom….. it was an… astounding day. I think that it continued a pattern you can find in much of our (you and me) personal journeys…. the stark contrast of the deepest pain and the sublime joy.
I’m only sorry I can’t be there every time you need me ❤
Oh girl, you’ve been there whenever you could. And I can say the same about you—wish I could always be there when you need me. ❤
Linnea, I just nominated you for a “Lovely Blog Award.” You can check out the nomination at my blog: http://craigblower.wordpress.com/2014/10/20/october-20-2014-mon-lovely-blog-award-nomination/
Hey guys ,
Im from india . My age is 20 . Ive been smoking since last three years.. Earlier i used to smoke just 2 cigarettes per day but now ive smoking atleast 25 cigarettes per day. Today i just thought to google symptoms of smoking cancer.
Some of things i saw in myself
Shortness of breadth : Im young but even when i walk a single flight pf stairs im out of breadth like i was playing football just walking a single flight of stairs
I feel like theres a small cough like in my throat but it never comes out and i think this cough thing is from few months. I tries to spit them but they never came in my mouth and always remain in my throat.
I get a little bit of chest pain especially on the left side. I think its a normal pain but whenever i puff a cigarette i feel small pain in my left side.
Sometimes i forget what i did a day ago not totally but just few small things . I dont remember.
And very rarely but i feel pain in my back.
Please reply anyone im too young to die from smoking. Am i having trouble ? Is there any symptom of cancer ?
Sorry for bad english
Utkarsh, it is unlikely that these symptoms point to lung cancer as it is uncommon in someone your age. However, as improbable as it may be it is not impossible. Have you spoken to a doctor about your concerns? Most likely a chest x-ray would be ordered. A CT scan of your chest is the best way to diagnose and or rule out lung cancer—is that something you have access to? I am sorry that you are concerned and I hope you find out the cause soon.
First of all you respect a huge respect by me… You indeed a real source of inspiration to the ones who are still suffering and totally lost their hope…
Its possible that these may be due to other reasons. Last nigh lt i saw on healthline website, symptoms of lung cancer and then i recalled that im experiencing some of these problems like i smoke 40 puffs per day so i thought may be ive to be serious over this matter. So should i see a doctor ? Are these pointing towards early symptoms ?
I would go see a doctor. It might be that you have bronchitis or a pneumonia or some other cause of your symptoms that could be addressed. And in the case of lung cancer, early detection is much better.
+1 on what Linnea said. Lung cancer is very rare in people in their 20’s, although it can occur. Contrary to most opinions, at least here in the USA most lung cancer is not in smokers — it’s about 15% never-smokers, 60% former smokers, and the rest are actual smokers. If a person in their 20’s gets lung cancer, it is probably not due to the smoking yet (although the smoking can cause permanent mutational damage that could make the lung cancer harder to treat). You should get a proper diagnosis from your doctor (e.g., a pulmonologist would be a good place with the expertise). There are many possible causes of lung problems including irritation from smoking or something else inhaled, but more likely some kind of infection. (Even tuberculosis — TB — is common in southeast Asia, and should be treated if that’s the cause because someone with active TB can spread it to other people they live or work with.)
Linnea ~ I am just now catching back up with you and am ecstatic about your wonderful news! You are in mine and my husbands daily prayers…and God is answering them as evidenced by your latest test results! I too have good news to share. While taking the Xalkori and adhering to a ketogenic diet, 2 tumors have completely resolved and the other has reduced in size. My main concern is the build up of fluid in the pleura of my remaining left lung. I had 2 1/2 liters removed last month. According to my last chest x-ray, the fluid is gradually increasing again. Did you ever experience a build up of pleural fluid? My wish for you is continued healing as you continue with your nre treatment. May God bless you! ~ Debbie