Category Archives: ALK mutations

Miss March

IMG_2864

Don’t let the title fool you—mine was merely a supporting role.

The MGH Fund puts together an annual calendar, and I was asked to pose with a slide of my tumor (!) and March’s featured star, Dr. John Iafrate. John is a pathologist at MGH and also someone who knows me rather intimately–that is, on a cellular level. Those of you who are ALK+ are probably familiar with the Break Apart Fish Probe Kit–used to identify ALK+ cancers–well, that was developed in Dr. Iafrate’s lab. My continuing survival has been based on so much luck (a lot of it of the right place/right time variety). Had Dr. Iafrate not developed that diagnostic test when he did, well, I really would be history. As it was, my ALK+ status turned three to five months left to live into eleven and counting, come April (it was ten when we took this photo last year).

Pathologists are sort of the unsung heroes when it comes to the treatment of cancer despite the crucial role they play. When I was initially diagnosed with NSCLC in 2005, I wrote a thank you note to the pathologist. My general practitioner couldn’t see the forest for the trees, and had attributed more than two years of symptoms highly suggestive of lung cancer (cough, shortness of breath, clubbing of fingers, and even hemoptysis) to adult onset asthma. Even though my diagnosis was devastating I was also relieved to finally have a plausible explanation for my symptoms and that gratitude was directed toward the pathologist.

So anyway, here’s to Mr. March and pathologists everywhere. You know us better than we do, and we couldn’t make this journey without your guidance.

 

Linnea live (I like the sound of that)

This video was recorded at the annual LUNGevity Hope Summit in 2014 and fits in perfectly with the theme of clinical trials. When I refer to starting a new trial, it is for PF-06463922 or lorlatanib (which has kept my cancer stable for 18 months now–woohoo!). I’m a little breathless and hoarse as my cancer was advancing again. I noticed immediately how fast I am speaking– markedly slowed speech has been a side effect of PF-06463922.

Slow, fast, hoarse or not, the most important message here is one of hope (thank you LUNGevity). When I mention going from cure to living longer I am talking about accepting the fact that I would never be cured. That’s a difficult concept to embrace but in order to make it even remotely acceptable I found I needed to replace cure with a potentially obtainable goal—becoming an outlier. At ten plus years (eleven, in April) I am there.

Secondly, the importance of options. When diagnosed in 2005, the first hurdle I hoped to jump was qualifying for surgery. I had nineteen lymph nodes and most of my left lung removed followed by four rounds of adjuvant chemo and yet my cancer returned almost immediately. Two strikes, and I’d been informed that treating lung cancer was basically three strikes and you’re out. My first clinical trial in 2008 was a long shot. I was thrilled beyond belief when I responded to crizotinib, but also understood that it represented a temporary fix and that there was nothing else out there once it stopped working.

Thankfully, that’s no longer true. Sadly, there aren’t viable options for everyone with lung cancer. Medical research got me to where I am today (alive!) but we can’t stop now.

Taking the leap into clinical trials

I was initially diagnosed with non small cell lung cancer in April of 2005. My tumor was large (5 centimeters); a poor prognosticator. However, it had not spread beyond my lungs and I was staged at IB. One week after diagnosis I had the lower lobe of my left lung removed. As I was recovering from surgery my new oncologist introduced himself; Dr. Tom Lynch. I had no idea back then, but I was incredibly fortunate to have Tom select me as a patient. The reason behind his coming to me rather than the other way around? As a young (age 45) non smoking woman, I fit the profile of someone who might be EGFR+ and Tom was an early innovator in the investigation and treatment of EGFR+ patients.

I tested negative for an EGFR mutation but in the process acquired arguably one of the best oncologists in the world; someone who was always forward thinking and cutting edge in his approach to treatment. In fact, I was offered a chance to enroll in my first clinical trial soon after surgery. Because of the size of my tumor, adjuvant chemo was indicated and a trial that would include the addition of avastin was proposed. I was having a difficult time even being convinced to have chemotherapy (Tom was adamant) and I couldn’t wrap my head around the possibility of also being a medical research subject. As it turned out I would not have been a good candidate anyway–I am a bit of a bleeder and I was coughing up blood for weeks post lobectomy (there is a small but significant increased risk of serious pulmonary hemorrhage secondary to avastin).

Fast forward to September of 2008, two months after I’d been restaged to IV and advised that I likely only had three to four months to live. At my scan review after two months of tarceva–tried as a last ditch effort even though I was EGFR-, there was nothing but bad news from the radiologist. However Tom shared that a sample of my biopsy had been submitted for further genetic screening and had come back positive for an EML4-ALK translocation (another example of how ahead of the pack he was—the ALK mutation had been identified as a driver in NSCLC only months prior to that).

As we discussed the significance of this finding we also reviewed my options going forward. The way Tom saw it, there were four possible scenarios. I could stay on tarceva, return to traditional chemotherapy, do nothing (that option only underscored how serious my situation was) or attempt to enroll in a phase I clinical trial that targeted ALK mutations such as the one that was driving my cancer.

Would you believe me if I said I never hesitated but instead leapt at the opportunity to be in a clinical trial? Why now but not back in 2005?

This is why.

This image of my scan says it all. The upper lobe of my left lung was now almost completely clouded with consolidated ground glass tumors which had spread to my right upper lobe. And I had been told that I might have three to four months to live two months ago. The math was easy—I had almost run out of time and out of the four options I’d been provided with, only one seemed to offer a glimmer of hope.

And glimmer is the operative word. There was no precedent for me back then—no reason to believe that this trial might actually prove effective. All Tom could offer me was the fact that I had been preceded by one other participant at MGH. ALK+ like me but so debilitated by disease that they were confined to a wheelchair. Their initial response had been extremely encouraging, to the point where the wheelchair was temporarily abandoned. But then they had died, in part due to the toxic effects of the trial drug on their liver.

So this is what I knew. One before me with a promising response who had succumbed both to disease and to the toxic effects of therapy. That the experimental therapy could in fact prove fatal to me as well. But that my cancer would certainly kill me if I did nothing. An easy choice, after all.

And so, on October 1 of 2008 I had my lead in dose of the drug that would eventually be known as Xalkori.

 

Love story

Day 28: for my final post devoted to Lung Cancer Awareness in the month of November I am going to talk about my superhero: Dr. Alice Shaw.

Alice and I met under what then felt like sad circumstances. It was the spring of 2009 and I was several months into my snatched from the brink of death fairy tale; aka crizotinib. As far as I was concerned (and I still feel this way), my original oncologist Dr. Tom Lynch walked on water. However, I woke up one morning only to read in the Boston Globe that Tom was leaving MGH to become the head of Yale’s Smilow Cancer Center. I was devastated and sent him a quick message saying I felt like he’d broken up with me via email. In my head I was already thinking I’d have to move closer to New Haven as I viewed my continuing survival to be inextricably linked to Tom Lynch–as an oncologist he was always on the cutting edge, having tested me for an EMLK4-ALK translocation in June of 2008, long before most of the world had even heard of an ALK mutation.

Tom replied quickly and with assurance; he had hand-picked my next oncologist and he was certain I would adore her.

I was at MGH for a long trial day (PF-02341066) when Alice introduced herself to me. We chatted for more than an hour as I had soooo many questions regarding my cancer (she was the lead investigator for PF-1066 as she was for ceritinib, the next agent I would go on trial for). She listened carefully, compassionately and answered with honesty but also great detail. The treasure chest that was my own personal medical information had finally been opened and I was smitten.

alice-t-shaw-md-phd

Dr. Alice Shaw (thank you MGH The One Hundred)

So what makes Dr. Alice Shaw so special? I had some fun researching her online in order to write this post and it amused me when I’d run into something I’d written when googling Alice Shaw (I have been rather vocal in my adoration). She was honored as a caregiver at MGH’s The One Hundred celebration in 2012 and at that time I said this: “Alice is an uncommon blend of brilliance and compassion. My relationship with her has greatly advanced my understanding of lung cancer while validating my personal experience–when coping with a serious illness that validation is empowering.”

That’s sort of Alice in a nutshell. Harvard educated (B.A. biochemistry, MD, PHD) she is an associate professor of medicine at her alma mater in addition to being a clinical oncologist at Massachusetts General Hospital. She has been awarded numerous research grants and awards and on November 2nd was appointed as the inaugural incumbent of the Paula J. O’Keefe Endowed Chair in Thoracic Oncology. I was fortunate enough to be in the audience, as was Dr. Thomas Lynch, my original oncologist–he has returned to MGH in the position of Chairman and Chief Executive Officer of the Massachusetts General Physicians Organization. Dr. Jeff Engleman, no slouch himself in this crowd of crowds, gave the introductory speech and noted that Alice is simply the best at everything she does. But that she is also incredibly humble and down to earth and places the utmost importance on patient care–that she is fully invested in securing the best possible outcome for every single person she treats.

When Alice came to the podium that evening, she expressed her gratitude to all those who had supported her. Mentors, colleagues, fellows, research assistants, members of pharma, benefactors, family–including her Husband Stan and two lovely sons who were all in attendance. But she also thanked her patients.

Dr. Alice Shaw is a rising superstar in the field of thoracic cancers. I recently heard her husband Stan make the humorous comment that he knew her before she was famous. The beautiful thing is, the only way in which fame has changed Alice is she’s slightly less accessible due to demand. However, as I noted in my blog about my friend Christian, although he is no longer getting his care at MGH, she still calls to check up on him. Somehow, some way, she finds the time.

In 2012 I had this to say about my oncologist and I wouldn’t change a word today: “Alice is my super-hero. She is contributing to the future of cancer research and treatment. And she is doing her best to make sure I have a future as well.”

Love you Dr. Alice Shaw!

…..

I am the lowest common denominator when it comes to instructions/rules/general compliance etc… This post is intended to be part of a blog chain this month (along with my blogs about Christian and Diane) but I failed to list the blogs prior to and following. I shall this time, however!

Yesterday: By Craig Blower about Dave Bjork found at http://craigblower.wordpress.com

Tomorrow: By Dann Wonser about Genevieve Wonser found at http://www.dannwonser.com

 

But I know more details would be helpful…

My beautiful daughter on a particularly fateful day.

My beautiful daughter on a particularly fateful day.

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.

Update

I had my CT scan and appointment with Dr. Shaw yesterday. As anticipated, the news is not particularly good. The radiology report reads: ‘A mixed attenuation lesion in the left lower lung zone now measures 8.4 cm, previously 6.9 cm. There are also increased small ground glass nodules adjacent to the lesion. The central solid portion of the lesion now measures 6.2 cm, previously 4.4 cm. A mixed attenuation lesion in the anterior right upper lobe now measures 1.4 cm, previously 1.4 cm. Another right upper lobe lesion now measures 7 mm, previously 4 mm. Inferior right upper lobe mixed attenuation nodule measures 1.5 cm, previously 1.2 cm—Interval increase in size of dominant mixed attenuation lesion in the left lower lung zone and some of the right upper lobe nodules consistent with worsening lung cancer.

Still, were I not symptomatic, Dr. Shaw would consider leaving me on Xalkori for a little longer. However, upon examination she noted how very wheezy I am and we both agreed that it is time to try something else.

Two weeks ago I realized (with no small degree of horror) that I had gotten mixed up on my medication and had been taking my Xalkori only once a day. At most I made this mistake for two or possibly three weeks but I was absolutely mortified when I reported my discovery to Alice (Dr. Shaw). Hopefully it had no major impact upon my response, as my symptoms had never abated. However, it is a potent reminder that I have been terribly distracted. As Alice remarked, I have a lot on my plate.

I am to start the new trial on the 13th of May. We have a scheduled mediation for our impending divorce on the 16th and my first impulse was to push back the trial date. Last night I did a lot of soul searching and realized that I need to get my priorities straight (the mediation can wait if necessary).

In addition to my own worries, Pete is experiencing some challenges (kid can’t get up in the morning) and I’ve been back and forth to Exeter a number of times. Desperate times call for desperate measures, and I am setting my alarm for 7:20 every morning so that I can place a rise and shine call to my sleepy son. Yesterday I had to call repeatedly; today he picked up on the fourth ring.

I confess to feeling somewhat overwhelmed. However, my internal dialogue moves quickly from wallow to wonder; I am still here.

Live, love, life.

 

Word of the day: Optimism

I just made an appearance in the Massachusetts General Hospital Newsletter: Targeted Cancer Therapies Make MGH Patient Optimistic — MGH Giving.

Serendipity I guess, as it looks as if I’m about to enter my third clinical trial for a targeted therapy. On the 28th of April I will have a CT scan and then meet with Dr. Shaw. The expectation is that the scans will show progression; (but it sure would be nice if that expectation was inaccurate) and the plan is that I will sign the paper work to enter the PF-06463922 trial. If it’s a go, washout begins the following day; I will likely start the trial two weeks later.

In the meantime, I’m getting excited. Teeny bit nervous, but overwhelmingly (yes, it’s true) optimistic. Here’s hoping the third times a charm…

Downs and ups

I’m going to begin with another blanket apology. Not only have I been a poor communicator when it comes to blogging, I’ve also not been very consistent about returning personal emails, texts and phone messages. Somehow I lost my date book (in a snow drift somewhere, I betcha) and chances are excellent that if I’ve not done so already, I will miss some appointments.

This galls me because I don’t like being a no-show. In a world rife with promises and proposals, showing up is the only real currency, and I’m afraid I’ve fallen behind in my accounts.

There. Now I’ve at least acknowledged my shortcomings and offered an apology (perhaps preemptively in the case of upcoming appointments).

On the home front, I’ve been back in my apartment for a week and a half now. Servpro did a wonderful job and once again my landlords are to be commended for their quick attention to the mold situation. My eyes are no longer red each morning and my rash has disappeared as well. The only thing that has lingered is my cough, and that, unfortunately, is due to the progression of my cancer.

Yes, when progress is anything but. I saw Alice last week to review my latest scans. Compared to the previous CT scan (six weeks earlier) my cancer is picking up its pace. The largest area of tumor in my upper left lobe increased in size  from 4.0 cm x 1.9 cm to 4.2 cm x 2.5 cm. Noted on the radiology report (and quite obvious when viewing the earlier scan side by the side with the most recent one) is increased prominence of the ground glass opacity. And of course there are numerous little nodules in my right upper lobe as well.

The plan is to start back on Xalkori (crizotinib) asap. First, however, my insurance company has to approve the prescription. To that end I’ve received an automated phone call making certain I was me (social security number? mother’s maiden name?) but no other word and certainly no drug showing up in my mailbox. In the meantime, I’m continuing to enjoy grapefruit, which will soon be verboten.

How am I feeling? Overwhelmed. Sad and occasionally very frustrated. Tired and weaker; both of which I attribute to the progression of my cancer. Sore—I’ve screwed up my back something wicked. I was carrying my easel across the parking lot and slipped on some black ice and fell down hard. Unfortunately I think it was the last straw for my back. So, now I’m sporting a brace, sucking down advil and just hoping that time (and, finally, some respect!) will heal.

Of course, in addition to the trials and tribulations there is the wonder and not some small sense of pride at this fresh chapter. I’ve made fantastic new friends and gone to parties, potlucks and art openings galore. In a further sign of my commitment to the future (rsvp-ing, if you will), I have rented some additional studio space at the mill next door. It is where I shall paint but also set up shop—soon I hope to be offering for sale not only my photos and paintings, but a slew of vintage clothing.

Yes, in those months when I was getting chemo I was busy. Shopping. Hanging out at thrift stores and buying up a rather impressive array of clothes, shoes, hats, scarves, bags, ties and jewelry. In April the doors will open to The House of Redemption: Second Chance Clothing.

So you see, as I said to Alice, I’ve got plans. Big plans. And although cancer may mess with them a little, it’ll just be a temporary setback. All this stuff I’m hoping to do is a form of positive visualization; my rich fantasy life put to therapeutic use. And I am certain it can be realized. To wit: after my appointment with Alice last week I placed a phone call to a woman who was selling some inexpensive teak storage units on Craig’s List. I liked the sound of her voice and as I drove to her house I fantasized that she would be really great, we’d become fast friends, and she would invite me for dinner.

Well, when she opened her front door I was enveloped by the smell of curry. We began to chat about this and that. I agreed to purchase the shelving and went out to my car to get it ready for loading. When I came back inside, this very nice woman said that she had just spoken to her husband on the phone and if I waited twenty minutes, he would be able to assist me. And then she asked me if I would like to stay for dinner.

I laughed and told her that I was almost embarrassed as I had in fact imagined this particular scenario. I suppose some people might have been alarmed at this point, but as it turned out, we were two peas in a pod. Her husband came home, we (well, mostly he) loaded my purchases, and then the three of us sat down for a delicious meal. It was a magical experience and, I am certain, quite out of the ordinary for a Craig’s List transaction.

Moral of the story—go ahead and hope. You never know where your imagination may lead you.

Straw houses: feeling a bit blown away…

I’m in a funk. The kind of piss poor and discouraged frame of mind that has left me wondering just how much more I can handle.

Of course, I know exactly how much—whatever life throws at me. In fact, I’ll borrow a quote from an article in yesterday’s NY Times (and originally quoted from Samuel Beckett): ‘I can’t go on. I’ll go on.’ The beautifully written opinion piece from which I snagged the Beckett quote was composed by Dr. Paul Kalanithi, chief resident in neurological surgery at Stanford University. Diagnosed with advanced lung cancer at the age of thirty six, Dr. Kalanithi has been learning how to navigate the tangible (statistics) versus the intangible; hope. You can read his thoughtful and moving commentary at this link: How Long Have I Got Left?

It’s cold, windy and dreary outside. At times like this it is my habit to note how happy I am to have a home. Only, right now I kind of don’t. Which is not to say I’m homeless. I’ve been temporarily evicted–make that evacuated–from my own apartment. A week ago I traced an unsettling dirty foot smell to the utility closet. There was standing water on the floor all around the hot water tank. I sent an email to Mark, the wonderful maintenance man by day/sometime drag queen by night. He called me within an hour (leaks are the chest pains of the world when it comes to apartment triage). His thinking was that it might be a loose gasket in the garbage disposal, as the sink was directly adjacent to the utility closet. He said he’d come by in the morning.

The next day the floor of the closet was dry. I ran the disposal, but no water appeared. I took a shower–to test the water heater. Again, no dampness. And then, just to be thorough, I started the dishwasher. Bingo!

Long story short, the dishwasher had a cracked drum which had obviously happened prior to or during installation. What may have started as a slow leak (clearly unnoticed by prior tenants) was now a gush. And bleeding up the drywall behind the dishwasher was mold—the black, nasty kind.

I was calm at first. Took myself to Five Guys and had a burger and a think. I followed that up with some internet research on black mold; some of it quite alarmist. The most reasonable source of information was from the EPA and CDC. I have a known allergy to mold and after a bit of reading I concluded that I was showing signs of acute exposure, as my eyes had been red and irritated for weeks and there was a rash on my wrists as well. And, of course, I’d been coughing. Clearly my lungs were at risk. Everyone involved quickly came to the same conclusion–I’d need to vacate my unit while the mold was remediated.

Fortunately there is an empty apartment in the lofts; a showroom of sorts and it is equipped with an airbed. I went back to my place and grabbed some clothes, sheets, a towel, a plate, a cup, glass, fork, knife and spoon. My teakettle and my laptop. Medication. I turned the forced air heat off and Mark and I plugged in some electric heaters. Jim from Servpro came by. He assessed the situation making use of a cool little device that picks up the temperature differences in moisture, and then he made his recommendations. The area around the mold would have to be contained within a ‘tent’ constructed from strapping and plastic sheeting. Servpro employees would then suit up before removing the kitchen cabinets and replacing two sections of drywall. Two big air scrubbers were plugged in and I said goodbye to my stuff and decamped down the hall.

That was a week ago. The air intake for the furnace is located just behind the moldy wall and as indicated by air quality testing, the heating vents were pressure cleaned. A natural product made from botanicals (Benefect) was fogged throughout the unit. Today, the drywall was replaced and the wall repainted. New cupboards and a dishwasher have been order and will be installed as soon as they arrive. I hope to be back home within a couple of days. 

Of course, I’ve got more on my plate/mind than housing. Tomorrow I have a chest CT scan as a follow-up to an appointment with Dr. Shaw two weeks ago. At that time I learned that I do not qualify for the trial of the new ALK inhibitor, PF-06463922. There is a requirement that your last treatment was an ALK inhibitor and you showed measurable progression while on it. The fact that I had chemotherapy after coming off of LDK378 means that I am ineligible.

As a patient, I struggle sometimes with the rigor that is part of a clinical trial. The need for clean data (intrinsically related to FDA regulations) mandates a strict protocol for drug trials. That doesn’t always leave a lot of wiggle room for what might seem like compassionate and humane clinical decisions.

I have a friend who is also unable to qualify for the PF-06463922 trial because the tumors in her lungs have responded so well to treatment. However, she has numerous brain metastases and PF-06463922 is rumored to be effective at treating brain mets. In the strangest of catch-22’s—the current lack of cancer in her lungs means that there is no way to measure the effectiveness of the trial drug on thoracic neoplasms and therefore she is not a suitable subject.

There is a required two week washout period (again in the interest of clean data). This is tough, as many if not most patients with ALK mutations experience a flare of disease when coming off of ALK inhibitors. Again, I feel torn between the future (FDA approval) and the present, the urgent need of patients with ALK (and ROS-1) mutations for effective inhibitors.

In my case I will likely go back on Crizotinib, now marketed as Xalkori and available by prescription (so this time I, or my insurance, will have to pay for it!). Once I’ve shown progression, than I can get back in line for PF-06463922. So, it’s a toss-up. I hope the Xalkori is again effective for a sustained period of time, but I also don’t want to lose a chance to get on trial.

I’m feeling frustrated, for certain. On so many levels. I have been living an unsettled life for some time now. But, I continue to have much to be grateful for. A caring and responsive landlord. My amazing oncologist. And my innate tendency to persevere.

Blow my house down.

As it turns out, not quite enough (of me)

The word from the lab looking for the PD-1 protein in my biopsy is that there weren’t enough cells (cancerous or otherwise) for a thorough analysis. If it is determined that enough tissue was ‘banked’ after the biopsy, a sample will be resubmitted. Dr. Shaw is not particularly optimistic.

So, the plan for the moment is to watch and wait. We will rescan in November and as long as I don’t become significantly more symptomatic, my situation will be reassessed at that time. In lieu of a PD-1 antibody, I could potentially return to one of the ALK inhibitors which I previously benefitted from:  LDK378 or Crizotinib—although as the LDK is still in trial, I’m not sure how that would work. Chemo remains an option but given the slew of side effects, I would say it is the least attractive choice. What I’m really hoping is that I can hold out until the next ALK inhibitor comes to trial (rumored to be end of this year or beginning of next)—the timing could be just right for me.

In the meantime, my plate is plenty full. I’m looking for a place to live as well as a means of support. I realize that statement implies much and answers little; I’ve got a lot to process and when the time seems right, I will discuss this new chapter in my life.