Tag Archives: Crizotinib

FDA approval for crizotinib and a new name: Xalkori

On Friday, August 26th; crizotinib received FDA approval. It is now called Xalkori. Nice little features on both the ABC  (scroll down to find Xalkori) and NBC evening news a couple of nights ago. That’s my oncologist/goddess Dr. Alice Shaw providing commentary, and in the NBC piece, the images of the before and after chest CT scans are my lungs (an online friend recognized them and emailed me!). They do get around (my lungs and Alice).

I should also mention that there was a story about Pfizer’s coup in the Wall Street Journal on Tuesday with a picture of and a few quotes from yours truly. My Dad Ollie, who read the WSJ faithfully, would have been pleased to see me there.

I’ve noticed some criticism on the blogsphere, as Xalkori comes with a hefty monthly price tag ($9600), but Pfizer has taken steps to provide financial aid for those who need it. Also called out has been the fact that only 4-6% (or according to this latest data, almost 10%) of people with NSCLC have a mutation of the ALK gene. However, there are so many cases of lung cancer world wide (according to WHO, 1.4 million deaths yearly from lung cancer), that when you do the math, it is a truly significant number of patients who shall potentially benefit.

So yes, Xalcori is big news for Pfizer as well as those of us with lung cancer and the FDA is to be applauded for streamlining the often ponderous approval process.

And now, on a more personal level; what’s up with me.

On August 19th I took my final dose of crizotinib (Xalkori). I am now ‘washing out’ in preparation for my next party trick (make that a miracle). Yesterday I peed in a cup, had bloodwork, a physical, an EKG, a chest and abdominal CT (with contrast–blech) and a PET scan as well. I was given one of those nifty cards identifying me as residually radioactive for 24 hours (just in case I encountered someone with a geiger counter).

I am scheduled for my lead in dose of LDK378 next Wednesday and that’s when the circus really starts.

In the meantime, I am feeling pretty crappy. I saw Alice (Dr. Shaw) yesterday, and she thinks that quite probably, the crizotinib was still conferring some protection, which is good news if in the future we want to add it to my arsenal again. Now that I’m off treatment, my energy level has really dipped and my shortness of breath is catching up to me. Today I made myself go on a walk, as I’ve been breaking my own rules lately (never stop moving). It was also Peter’s first day at the Academy, and he’s going to require a lot of support as he adjusts to a very rigorous academic schedule, so I’ve got to stay on my toes.

What can I say? It is a stressful time for all of us, but we are doing our best to stay positive and hopeful. Because that’s how it’s got to be.

And now, I play catch up

We are back in Meredith, and it is cold, cold, cold. It has been a week crammed with all sorts of activity, and I will now do my best get up to date.

Our flight home was uneventful, although this time everyone was asked to submit to a full body scan. As I am a frequent flyer when it comes to CT scans, I opted for the pat-down in lieu of even a small amount of additional radiation. Surprisingly, they asked Peter (who is thirteen) to go through the scanner, but he requested a pat-down as well, even though it made him acutely uncomfortable. Sad times.

We’d left Marfa at 6 a.m. for the airport in El Paso, and it was well past nine when we pulled into our driveway on the east coast. I immediately went to bed, as I had yet another 6 a.m. departure for Boston on Tuesday for a CT scan (like I said, frequent flyer). It was hurry up and wait at the hospital though, and my scan was two hours late. Good thing I brought a book.

Wednesday I unpacked and started putting our house back together after the work that had been done (looks beautiful handyman Dave), and Thursday I left the house at 5 a.m. for my appointment with Dr. Shaw.

The first thing Alice (Dr. Shaw) discussed was my CT report. She was very pleased, as everything has remained remarkably stable, and the new nodule in my right lung had actually resolved. The report read as follows:

“Lung and Airways:  Status post left lower lobectomy. Interval resolution of 6-mm right upper lobe nodule. Left upper lobe mixed attenuation nodule, now measures 1.8 by 1.2 cm, previously 1.8 by 1.3 cm. Another mixed attenuation opacity in the left upper lobe, now measures 4.5 by 1.5 cm, previously 4.7 by 1.4 cm. Multiple other solid, groundglass, and mixed attenuation nodules are unchanged. Mild interlobular septal thickening. Again noted at the left lung base. Pleura: small left pleural effusion, not significantly changed.”

Stable and interval resolution; those are the adjectives I like to see on a report.

Next we discussed the biopsy. Obviously, it was positive again for cancer. There were no further rearrangements or mutations of the original EML4-ALK mutation. This means that at least some of the ALK inhibitors in the pipeline might not be appropriate for my next line of treatment. I was disappointed by this news, but Alice concentrated instead on the fact that for the time being, my recurrence is proceeding very slowly. I continue to feel good and perhaps due to the advair, my wheezing has lessened as well. So, the scenario she imagines for the future is this:  I will stay on crizotinib as long as possible, and in perhaps six months or so, the crizotinb would be combined with another targeted agent.

I left her office feeling pretty jolly, and after picking up my paper bag full of crizotinb, I met up with my dear friend Melinda for an afternoon of traipsing around Newbury St.

More catching up on Friday, and then everything ground to a halt for a while in the wee hours of Saturday morning. I awakened about three a.m. with a headache and an upset stomach. I groggily downed some antacids and relocated to the couch. An hour later I was up and grabbing for a bowl, for what was merely the onset of eighteen hours of laying flat on my back and/or vomiting.

For some time now, I have had nausea and occasional vomiting as a side effect of the crizotinb on about one day a month. At this last visit, I remarked upon the fact that it had been several months since that had happened. Well, I guess I spoke too soon. This was certainly the most severe episode I have had, and I have to wonder if the antacid had something to do with that. I had noted previously that calcium supplements in conjunction with crizotinib increased my nausea. The Tums that I took contain calcium carbonate, so I suspect that exacerbated the situation. I won’t do it again!

My goal this past weekend had been to plan a quick trip to Toronto to go visit Guillermo (see comments), who I  fondly refer to as the co-author of this blog. Three fourths of the way thru my puke fest, I felt well enough to check my email and opened one from Guillermo, who is undergoing radiation, in which he confessed that he didn’t feel well enough for visitors. What follows is a (slightly) edited recap of our exchange:

Dear Linnea –
This is not my usual email. I am not feeling so well these days.  Radiation is much harder on me this time.  I am tired all the time and just generally feel unwell.  I have no appetite and mealtimes are completely uninteresting.  I didn’t go for my sessions last week after I send you last email because I felt so bad,  the next day I had an appointment with the radiologist/oncologist who had blood work done plus urine test and sputum test to check for an infection in the pleura, she also requested a CT scan for next week.  I have to go on Monday for a make up radiation so that I have the full ten sessions.  I will be so glad once it’s finished.
To rest in the weekend we gave up 2 subscription theatre tickets.
I was really looking forward to meeting you.  However, because of how I am feeling I think it better with Xmas so close if we postpone it until the spring.  This is a big disappointment but my energy is non existent at the moment and I feel bad that you have to make such a long drive and I will not be the best company.  I hope that once I recover from the radiation and can start Alimta my strength and energy will return.
We plan and the gods have a good laugh.
( ) ( ) Guillermo

Guillermo, I more than understand. I am so disappointed that you are not feeling better. Thanks for being honest but also making room in your life for me and please let’s stay in touch. Even if you’re not up to co-authoring my blog 🙂 let me hear from you. I will keep your fans apprised.
Funny, I have hesitated on making my final plans. David said there were people caught in traffic for twelve hours the other day due to a snow storm on the way to Buffalo, and he was really encouraging me to fly. And then late yesterday I had an unusually bad reaction to my medication, and I ended up vomiting for twelve hours straight. Sucks to feel bad, and has a way of making you not care about anything else.
My scan last time was stable, and the bright spot in my right lung had disappeared. The first time in a long time I have seen the words stable and resolution on one report. Good thing, too, as I do not have a mutation of my mutation, and so there is no magic bullet in line for the next treatment (yet).

So, I guess we’ll have to let the gods have their laugh, but I am sending all the atheist good energy your way that I can muster. As I have said before, even though we’ve never met, I feel as if I’ve known you forever. Were it true, I’m sure we could have gotten ourselves into some fine and fun trouble. I love you, my friend, and please ask Beryl if you are not up to letting me know how you are, if she wouldn’t mind sending me an email occasionally. Please give my love to her as well. Linnea

Dear Linnea:
4.30 pm Just returned from 2 hospital appointments. Glad that torture radiations ended yesterday, for 3 days my throat is sore, my appetite is returning but have to eat baby food like yoghurt and peanut butter, I asked for BBK medium rear and got it over done. My prescribed gourmet drink is Muscosiks mouthwash. All the tests  blood, urine, sputum are negative, so this is positive… Tomorrow evening I  am going downtown with Beryl celebrating with an extra CT scan. Expect to feel much better for Xmas, takes 1 month before we know if the radiation helped like with pain and sweat reduction.
I gave advice in the rad section today. An old indian man with wife dressed in shari ask me “Do you know radiation?”, Yes I had it many times., “I have something in my head, they say it may be cancer. Does radiation hurt when they do it?” No, you feel nothing, people get a sun burn, but I didn’t and you have darker skin, may hurt latter, is the healing process. “Do you have cancer?” Yes, for 5 years here, pointing to my chest. “Breast cancer?”…
Also for 3 days we have the first wintery weather, Toronto is good just 1″ of snow but places in the sow belt around Buffalo or London have over 20″ and I am glad that you didn’t have to drive, many accidents, David was right but is nicer to have the car.

You may worry but I waited to finish rads and have test results before replying. I will continue co-authoring your blog even when we know that men are boring and not sensitive like women. Today was really nice first we meet my petite italian Dr. Dory, always star and ends with hugs and talks about my girls. Waiting for the radiologist doctor we came across my favourite radiologist technician Petula, she is around my daughters age,  and was hug and kisses again and explanation to Beryl that we she has portuguese blood and we talked a lot about our trips, she was in the basque country twice this year, loves San Sebastian were I had family and spend vacations good times. I wish my oldest daughter showed feelings like Petula.

Great news and relief with your scans, maybe my yelling to the gods worked.
Vomiting 12 hours straight is horrible, my dog just vomited 1 hour after enjoying 1 pound of belgian chocolates.
If I vomited like that I will be playing sick baby for a week, women are different, practice vomiting during pregnancies,,,
hum, maybe, you really had a good time in Texas and got the magic bullet.

I think is great that Beryl and you email, you have things in common, things to share, things like Me, she is going to write.
Your good atheist energy arrived, I feel better.
With my first girl friend I coudn’t say te amo (I love you) and said instead the quiero (I like and wan’t you), silly me
My good, good friend I love you
GuillermoRed lipsWilted rose

PS select, cut, copy and paste to your blog Red heart

Hey you (G), thank you for the lovely email. Most of it will be going in my blog manana. Made me weepy even (and ok, yes, I’d had a glass of wine or two but I would have (wept) anyway). Sounds as if your spirits are up. I confess to having been crushed by “this is not my usual email” although I appreciated your candor. I’m just kinda crazy fond of you and I like the world better with you in it. If you heard my message (yes, I called), I hope you weren’t surprised by how much I sound like a kid. In my next life I will have a deep, sultry voice (think Annie Lenox). I would love to have Beryl email. I liked the sound of her voice on your message, and I have always assumed that, married to you, she is a fabulous person. And as for magic bullets, well, I’ll never tell. However, no more ninos for me–chemo took care of all that business.
Love, Linnea

So, Guillermo’s comments go in the blog this time, making this the longest blog of all time. And one long week as well. Glad it’s over and happier yet that my partner is back.

Reports from ASCO, 2010

The annual meeting of ASCO (American Society of Clinical Oncologists) is this weekend, and Crizotinib is attracting some attention. Today the plenary session will include accumulated data from the PF-02341066 trial and already there are several online articles in which Crizotinib is discussed.

Medpage has a video interview with the PI (Principal Investigator) of the trial, Dr. Alice Shaw.  She is also my oncologist.

A reporter from Bloomberg Businessweek spoke to me some weeks ago, and today there is an online story about Crizotinib which mentions some of my own experience on trial.

And the Sunday New York Times featured an article in today’s paper that references two promising new cancer therapies; Crizotinib is one of them.

It’s really very exciting to witness and to have been fortunate enough to have participated in what I hope is merely the groundswell of a new era in cancer treatment. That this innovation should also be happening in lung cancer, the cancer that kills more people than all other cancers and which has been notoriously difficult to treat at all but the earliest stages, well, hallelujah.

Sum of our parts

My first week in my sixth year post diagnosis was ushered in with a quiet celebratory dinner in Portland, Maine.  And then it was back to the brass tacks of regular life.  Around here that includes (but is not limited to) cooking, walking, doing the laundry, painting, parent/teacher conferences, a little shopping with Jemesii, driving to Boston for scans, car pooling, doctor’s appointments, watching movies, and just being damned happy to wake up each and every morning.

In the course of my garden variety activities this week I made two small discoveries regarding my own particulars.  As part of my annual exam, my height was measured, and I have lost another quarter inch.  Thirty years ago I stood almost five feet eleven inches tall, but now I’m a mere five nine and three quarters.  Coincidently, I also had my feet measured this week;  something that had likely not been done since I was fitted for my last pair of buster browns in the sixties.  My right foot is an entire size larger than my left foot, which accounts for the blister on my left heel (which has been slipping up and down in a shoe a size too large).  Now I just have to find a shoe store that will sell shoes in singles rather than pairs…

My neuropathy in my feet has gotten worse again, and yesterday I stumbled and fell not once, but an astounding three times.  The first time I fell, I was standing on a chair in my studio. A painting caught my fall and snapped in half. Fortunately, it was not one I’ve spent a lot of time on.  I happened to be wearing a felt bowler hat, and when I stumbled, our dog Buddy came rushing over as if this was all some great game.  So there I was, on the ground, two halves of a painting beside me, hat over my eyes, me laughing and Buddy ready to rumble.

Yesterday I asked David, “so, who am I?  Writer, artist, mother, cancer patient?” I was half joking, but I do sometimes feel as if I wear a lot of hats (and not just felt bowlers).  And that is just my vocations, my avocations, or those things I do just for pleasure, surely define me as well.

Perhaps paramount among them is treasure hunting.  I really, really like to look for things, whether it is on the beach, in the dirt or at a thrift store.  I am particularly drawn to that which is worn down in some way;  objects which carry the marks of time and passage.  I have an old vitrine in my studio which is filled with an assortment of found treasure, and that is what I was photographing when I took my misstep.

I don’t know how may of you saw the interactive collage of cancer survivors that the New York Times has on their website, but it is lovely.  The premise was to show life after cancer treatments, and for many of us there is no after cancer.  I posted  a photo, and they’ve included a feature where if you click on an individual photo, you can read comments.  I used this space to stress (once again) that for many of us, we don’t cross a magic threshold and graduate to survivor status, but rather content ourselves with surviving.

And speaking of surviving, Pfizer will be presenting more data from the PF-02341066 trial at the annual AACR (American Association For Cancer Researchers) meeting this weekend. In addition, PF-02341066 now has a name: crizotinib.  I see Dr. Shaw on Monday to review my latest scan results and I’m sure we will talk about the presented results as well.

In the meantime, that garden variety life calls, and next on the list is feeding the neighbor’s cat.