Wednesday morning I had a 7 a.m. check in at radiology. That necessitated a 4:30 a.m. departure time, and and although traffic was at a minimum (until, amazingly, we entered Boston), we came yea close to hitting a deer. It would have been a bad way to start the day, both for the deer and ourselves.
A few minutes before eight, we were led into the procedure room by the surgeon, who then carefully explained (complete with drawings, I love that) what he would attempt to do. As I had already been made aware, this was going to be anything but a slam dunk. The tumor that would be targeted was in an awkward position, not only within the lung (very peripheral), but in relation to where the needle would have to enter. There was an anatomical fissure within the lobe that could not be crossed and the exterior entry would need to be made through my (ouch) breast. A CT scan would be taken every step of the way to make certain that the needle was heading toward the target, and the team would be watching for a pneumothorax (partial lung collapse) as well as any excessive bleeding; both possibilities. Should either happen, it might be necessary to abort the procedure.
This would not be a needle biopsy, but a core; same idea but slightly different mechanism for retrieval of tissue (sort of like a spring loaded harpoon, only tiny). The list of potentially adverse side effects was gone over (I’m difficult to scare that way anymore) and once again I was told that this may or may not be successful.
Bring it on, I said. Come what may (and I was feeling very optimistic), this was going to be a hell of a lot easier than open chest.
And then my favorite part. I lay down, was wrapped in warm blankets and Velcroed to the table (big ol seatbelt, good thing I’m not claustrophobic), and just as I’m beginning to get to know the two attendants, the magic cocktail starts to flow through my IV. “This is going to be a brief relationship…” I say, and the next thing I know, I am on my stomach in the recovery area.
This is perhaps the hardest part. Groggy yet, I don’t know whether or not it all progressed as planned, but I am not allowed to speak or to move; as I am still at risk for a pneumothorax.
Soon the surgeon stops by, and I’m pretty sure I hear him say that everything went smoothly and he was able to retrieve a lot of tumor. At one hour post op I am wheeled in for an x-ray, and then again at three hours. At some point Alice (Dr. Shaw) stops by and grabs my hand. And then, finally, the three hours have passed, and I can turn over and sit up.
David is called into recovery, and the surgeon explains that, although far from straightforward, the operation was a success. My pleura (lining of the lung) had been tacked down, a not unexpected situation after having had several lung biopsies as well as a lobectomy. Oddly, this confers an advantage as far as making a pneumothorax less likely, but it would have made the open chest more difficult.
There had not been much hemmhoraging, and what I thought I’d heard him say was indeed true; he had been able to retrieve several cores. Yippee! I celebrated with a turkey sandwich and a ginger-ale, and then, still a bit woozy, David pushed me across the street to Starbucks in a wheelchair, where I had my first coffee of the day.
When we arrived home around 5 :30, I checked my email and noticed a message from a producer at ABC. She had ‘checked in’ with me the day before, and now she was requesting that I get in touch with her ASAP for an interview to air on the World News that evening. Crizotinib is in the news again, as Pfizer has released more data relating to phase two of the clinical trial (click here). I emailed the producer back and explained where I’d been that day; she immediately responded that there would be a short piece on the news anyway, and they had lifted a photo from my blog. So, those of you who think you saw me on the World News with Diane Sawyer Wednesday night, I think I did too! What a day.
On Tuesday I have my appointment with the trial team, including Alice. This morning she sent me an email saying that the pathologist had determined that there was plenty of tissue for the studies. So, the more conservative approach seems to have worked, and yesterday I was able to go hiking in the woods. Now I just need to keep my fingers crossed for some answers to our questions as to why the cancer is no longer completely responding to crizotinib.
Thank you for the update! I was worried! So happy everything went smoothly! I rallied the troops on Wednesday! So in addition to being famous on World News with Diane Sawyer, you’re also famous on my Facebook page!
You’re in my thoughts!
Tracy, man you’re fast. I just sent you an email too–thanks, thanks, thanks. And I’ll take you over Diane any day. Love, Linnea
L, You weren’t kidding about those photos. Gorgeous. Get those exhibit labels ready! Love you, W
W, I will, I will, I really want to (and will talk to the large format printer about possibilities…L
I have been waiting to hear how the biopsy went. I am so thrilled that all went smoothly and as planned.
The trial opened in Phila. late August. While I do not miss the long journey up to Boston every 3 weeks, I DO miss Alice!
The New England Journal of Medicine came out with a trilogy of articles on crizotinib.(reason for the renewed media interest) One article is devoted to the identification of two EML4-ALK mutations that have developed resistance to crizotinib. Drugs that target these new mutations are fortunately already in the pipeline. Lots of reasons for optimism!
Feel good and keep taking those beautiful pictures.
Evie, more than one reason as to why I’ve not run into you. I am happy that you no longer have such a commute…and hey, I saw something on ABC.com about you…s’wonderful! And yes, I am really hopeful about the future. Linnea
“Our nervousness is gone now, Only now can we begin to smile,”
is what I feel, after the second major event of the month,
the first in the words of 33 chilean miners finding that
‘although far from straightforward, the operation was a success’ and
“chanting and shouting with joy as a siren rang throughout “Camp Hope,” confirming the breakthrough, repetedly veering off course, the “Plan B” drill reached the miners at a point 2,041 feet below “.
If you need other biopsy consult with Canadian Precision drilling, they go around obstacles,
no need to be “Velcroed to the table” for reaction to the “ouch!” part.
Sana, sana pulmón con agujeritos
Sana, sana lo llenamos de besitos
sana, sana pulmón con ganas
si no sana hoy sanará mañana.
Heal, heal lung with little holes
Heal, heal we fill it with little kisses
heal, heal lung with desires
if doesn’t heal today, will heal tomorrow.
Guillermo, thank you for another rhyme as well as the comparison to a much bigger event. I will keep Canadian Precision drilling in mind. And I’m going to send you an email about travel plans…Linnea
Hi Linnea- I had been thinking about your big “B” day and am so glad it went well. You still had time to post all those beautiful leaves! Remarkable feat for a remarkable person.
Joan, many, many thanks and best wishes coming your way. Linnea
Just had a core biopsy at Emory Hospital in Atlanta last week and everything went well here also. I agree that this is lots easier than open chest. Tissue was needed so I can be tested to see if I can be on Crizotinib. Now I wait 2 weeks to get results. Again, so glad you did well.
Rhonda, good luck with the testing. Yes, the biopsy was much easier, but waiting is never easy, is it. Linnea
Glad everything went well, Linnea!
Suzanne, thank you! (and me too) Linnea
So glad to hear this was a success and that you are up and around so quickly! It will be interesting to learn why the tumor(s) has/have stopped responding to the drug…..I may be up in the Boston area within the month. I’ll let you know…if you’re in the area too we can “do lunch”. Take Care, Linnea (NY)
Linnea, I would love to have lunch with you. Let me know when you know the dates; as I will go to Texas for Thanksgiving again. Linnea (NH!)
this is Lulu from Sydney, Australia. I happen to read your blog today and I would like to say thank you for your blog, which is very inspirational.
I am 34 years old, non smoker. I was diagonsed stage IV, NSCLC in February this year. luckily, I was eligible to enrol in PF-02341066 trial in August 2010 and I am the first person to enrol in this trial in Sydney. there was a very good result with my first CT scan . the primary tumor shrunk by 50%. but with my second CT scan on 15 November 2010, It shows the tumors start to grow again. luckily, my oncoligist is willing to continue me on the trial for another cycle.
I am determined to do whatever I am required to make it work again.
Linnea, I will really appreciate if you can give me some advice about your daily routine of taking the trial drug ( such as do you take the drug before meal or after meal, what time do you take in the morning and at night), and any particular type of food, supplements you take and avoid, and anything else you do that helps with the treatment?
I look forward to hearing from you.
Cindy (Lulu), I take the crizotinib just after breakfast in the morning and right before bed in the evening. As far as supplements, I take 1000 mg of vitamin D daily (maybe not necessary in Australia), as well as B12 and cranberry.
I’m not really sure if the effectiveness of the critzotinib is affected in any way by those things–although I have heard that you can’t take milk thistle while on it.
I too have become resistant, but the return is slow and I remain on the trial as well. I believe the most important contribution I am making to my survival is staying very active–I try to walk two miles most days. Aside from that, I’m afraid a lot of it is just luck (or chance).
I wish you luck and please feel free to contact me at any time; with questions or just to talk. I will be thinking of you.
Thank you so much for your immediate response.
you have done a great thing to share your experiences with me and others. you certainly are my inspiration.
I am back to hospital to collect the trial drug today. I was off the trial for a week. the clinical trial nurse kept stressing that ” Cindy, you know that it is likely tumors will keep growing. eventhough the doctor changed his mind & decided to put me back on the trial again.” I am upset by her insensitive words. But I didnt say anything because I want to have a good relationship with my doctor and nurses. I am afraid if I tell them how I feel about their words, I might upset them. and they won’t take good care of me with my future treatment.
anyway, I havent given up my hope on this trial drug yet. In another 6 weeks, The moment determing my luck will come again. I am very dreadful about it.
Linnea, I like your photo with a big, sunshine smile. I need to learn to smile again & more.
Cindy, your nurse is wrong to speak to you like that and I’m not sure why she would. Hope is something we all have a right to, no matter what stage we are at.
Try to keep it in your mind that we are each exceptional–we were exceptional catching this bloody cancer at such a young age despite having never smoked. Our mutation makes us exceptional.
My cancer is still being kept in check to some degree by crizotinib. I’m not sure what is next for me either. I hope that your next CT will show stability, slow progression, or, better yet, reversal. Never let anyone take your hope away.