Tag Archives: PF-06463922

Just doing it

Screen Shot 2016-03-10 at 9.41.43 AM

I had my six week scan review yesterday—twenty months of stability and counting. At these appointments Dr. Shaw always gives my lungs a listen and this time she kept her stethoscope pressed to my back a little longer than usual and I wondered what it was that she heard. Nothing, as it turns out. I’ve had a little wheeze in the bottom of my upper left lobe all along, but for the first time, she couldn’t find it. ‘Maybe I’m cured’ I said. ‘Maybe you are’ she replied. Or maybe that’s just what I imagined.

What she did say was that she was relieved as she’d been feeling a little anxiety as to what might transpire after my being off drug for a week. Me too. It might be coincidence but my progression on crizotinib followed a break from therapy when I had surgery on a shattered left ankle. And resistance to zykadia came in the wake of my second bout of liver toxicity and subsequent pause in drug.

My labs three weeks ago indicated elevated amylase. My liver enzymes have been only mildly elevated on PF-06463922 so I have continued to enjoy a glass of wine most evenings. Now alcohol was no longer an option.

And why the break in drug? Two weeks ago I began to feel really crummy. A virus, probably strep throat, and then several days later a sinus infection as well. I was also really constipated, an unfortunate side effect of treatment. But then I started to get really uncomfortable with a burning pain in my abdomen and super nauseous–combined with my elevated amylase these symptoms were highly suggestive of pancreatitis. I was in touch with Dr. Shaw, who had prescribed an antibiotic for the ear infection. She felt it would be wise to test my amylase again and as I had an appointment with my ear nose throat doctor on Wednesday we agreed to do it then. In the meantime I would fast and drink only clear liquids so as to give my pancreas a rest. By late Tuesday I was feeling so very bad that I texted Alice and asked her if I should consider going to the emergency room.

Alice called me back and when I told her I felt this represented pancreatitis her response was ‘Linnea, I really hope you don’t have pancreatitis because if you do, it would be grounds for exclusion from almost all further clinical trials.’ This was news to me. Just the day before I had spoken to a friend who’d been excluded from a trial for pancreatitis but I was under the impression that hers was a singular experience pertinent only to that particular trial.

So I told Alice I was not going to get my amylase tested again–that I hadn’t come this far only to learn that I had no more treatment options because of an elevated lab result. She said we’d see how I felt the next day. The following morning I received a text from her  asking me how I felt. My guarded and completely disingenuous response was ‘Hi. Better.’ She then gently but firmly urged me to come in for labs. And I responded with this message:

Alice, I guess I haven’t been paying attention but until I spoke to Margaret I did not know it was grounds for exclusion and it was only after speaking to you that I understood that exclusion meant virtually all trials. I have a very strong commitment to surviving and treatment options are part of my hope for the future. Under any other circumstances I would get that lab work done but as it stands, it is absolutely not in my best interest in the long run. I’m sorry. I would like you to advise me as to how long I can safely hold food for though. Thanks.’

Alice Shaw is a fabulous doctor and I consider her a friend as well. I admire her in so many ways and one of them is how she can just roll with the punches. She heard what I had to say and yet stood her ground. She advised me that if I were feeling better and merely had an elevated lab result it would not be considered pancreatitis. I needed greater reassurance–‘Would that protect my future options?’ She repeated what she had already said, that a lab test alone should have no impact.

So I assented. I got the lab work done and it came back completely normal. Only then did I acknowledge that I still felt absolutely awful. A quick reassessment of symptoms and Alice surmised that this was likely gastritis and possibly a peptic ulcer, which I could address with laxatives and anti-reflux medication.

We also talked a little bit more about what could have happened if I’d actually had pancreatitis. I told her that I felt these sorts of exclusions were patently unfair, and she said that the rationale behind the exclusions was that certain individuals were more likely to experience serious side effects.

I don’t buy it. When I entered my first clinical trial in 2008, I was taking on enormous risk–the only other person in the trial had died almost immediately, in large part because of the toxicity of the experimental therapy. Knowing this did not in any way deter me because I understood that if I chose not to enroll in the trial (my only hope and a thin sliver at that), I would be dead within a couple of months anyway. It was a no brainer.

My explanation to Alice was this: If I experienced life threatening side effects I might be fucked but at least I’d be fucked with options. But that having no treatment options meant that I was totally fucked as I would experience the most devastating adverse event of them all—I would be dead. And that it is my viewpoint that patient safety might be a secondary concern to getting drugs to market faster and without hitches (like adverse events).

I trust Alice implicitly and know that she is highly invested in my personal outcome. However, I hold no illusions about what it means to move from patient to participant in a clinical trial–the loss of autonomy can be really, really frustrating.

In the end, nobody loves this life of mine as much as I do and self advocacy is key to survival. Woody Allen once said that 80% of success is showing up and when it comes to tomorrow, I will not be a no show.

Down the rabbit hole once again

IMG_2909

I was off drug for seven days–a subsequent post will detail why. On day seven my brother John called and at the end of our long conversation he said ‘your voice is back to normal–you’re talking fast again’. So I was. One prominent side effect of PF-06463922 for me is that I speak more slowly. It’s as if I just can’t quite drag the words out and for some reason (maybe all that effort) my voice comes out louder too. In addition, I often sound a bit incredulous, as sentences sort of trail up at the end. It’s something that not everyone notices–my neighbors in the lofts have only known the slow speaking version of Linnea. However it is quite obvious to me, my old friends and family.

That was really sort of fun, talking fast. Better still, that evening I realized that I felt different as well. Kind of like the old me–sharper, calmer, more organized in my thinking. Clearly the drug had washed out of my system.

The next morning I started dosing again. Within forty eight hours my speech slowed and that sense of internal calm evaporated (emotional lability is a potential side effect of this drug, and was a big problem for me when I was on the higher dose).

Yesterday was one of those days that just keeps poking you with a sharp stick. This whole college application thing has been incredibly complicated and Peter let me know that some forms I was supposed to submit for his financial aid package were missing. This ramped up my anxiety as I am no longer able to retrace my steps, if that makes sense. I feel sort of like someone crossing a canyon on one of those suspended foot bridges, and as I run, the bridge falls away behind me. In other words, no easy way to go back.

My daughter Jemesii was having a bad day too, as a psych eval that she had waited a month for (and gotten up very early to go to before work) was cancelled upon arrival because the doctor had called in sick. She would have to wait yet another month for a new appointment. Insult to injury, the receptionist was rude and insensitive–someone who should not be working with a vulnerable population. This stressed me out some more.

I had an appointment at noon for a new general practitioner–someone who works specifically with oncology patients. I was super excited but didn’t know how to get to MGH West and just assumed Siri (on my iPhone) could help me find the way. Well, she couldn’t parse the difference between 40 2nd Ave. and 42 Ave, which apparently doesn’t exist. And Waltham just didn’t compute for her. I turned my car on to warm it up and noticed three lights were flashing but I decided to get on the road anyway. As I pulled out I placed a call to the doctor’s office for directions but the switchboard ended up putting me through to billing where I was on hold for almost ten minutes. That individual wasn’t able to help me but said they would connect me to someone who could–but all I got was ‘We are unable to answer the phone but you can leave a message at the tone’. Damn. I tried Siri one more time, with a little less specificity. This time she understood, I got my exit, and was almost on time.

After the appointment I looked through my vehicle’s manual to see what those flashing lights meant—next to the icon that looked like an engine it said ‘take to Toyota dealer immediately’. Well fuck.

So this morning I drop my car off at the mechanic. I had scans in Chelsea so the plan was to take the train to Boston, walk to MGH and catch a shuttle to Chelsea. As I walked the half mile to the train station in Lowell our property manager called and told me that I had mistakenly sent my alimony and child support checks rather than those for rent. Oh boy. After I boarded the train I reached for my wallet and it wasn’t there.

Sometimes a girl just has to say uncle.

So home I went. Made myself a cup of coffee to calm down/warm up again. Called Chelsea to cancel my scans and sent my scheduler an email. This is one of those moments where my own challenges feel, well, just a little too challenging. That’s code for ‘and then I feel sorry for myself’. However, it never takes me long to gain perspective. Life is hard for most, and almost impossibly difficult for some. This drug that muddles my brain is also keeping me alive. And I can’t argue with that.

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.

Has it really been that long?

I can’t believe my last post was on March 7—I knew it had been awhile since I’d written but yikes! I would like to apologize to those of you who may have worried in the absence of an update. The good news is, it’s all good news!

Way back in April I quietly marked the ten year anniversary of my diagnosis with NSCLC. That’s right; a decade. I am absolutely understating when I say that I never, ever thought I’d live this long. Heck, my oldest child is thirty now and my youngest turned eighteen in April. I’m fifty-five—old enough to qualify for a senior discount at the Salvation Army Thrift Store (a privilege I don’t let go to waste).

Speaking of kids, my oldest son August came for a wonderful-if-too-brief visit in mid May and I had the pleasure of all three of my children’s company for a blissful 24 hours. We threw a party in my loft and celebrated any number of momentous occasions.

Peter, Jemesii, Linnea, August.

Peter, Jemesii, Linnea, August.

I’d also like to do a little bragging about my other two children: Jemesii manages a store on Beacon Hill called December Thieves—they just received Best of Boston and Boston Best Awards. And Peter is interning at the Koch Institute this summer—doing research on pancreatic cancer! Proud, proud mama.

May was also the month that my excruciatingly painful, protracted and expensive divorce proceedings culminated; everything is signed, sealed and submitted and will be final on September 1st. I shall write a bit more about this particular part of my journey at a later date. In the meantime, I am just so happy that the most difficult part is over with and that I can turn my focus to other things.

Fortunately, I am feeling really, really well (more than a year of stability on the PF-06463922 clinical trial) and my physical energy is generally exceeded only by my creative energy. I’ve got so many projects in the works, and one of the biggest is The House of Redemption: my combination studio/second chance clothing venue. I’ve been working behind the scenes for more than a year now, but the doors shall (actually! really! finally!) open on July 31st. Inside will be a splendid selection of both vintage and fine used clothing and accessories—as well as an artist (me) painting away in the back of the shop. More details and photos to follow!

Home of brave new art and second chance clothing.

Home of brave new art and second chance clothing.

In some ways I feel as if I am experiencing an unprecedented personal renaissance. The art school atmosphere of the lofts is a big part of why—this community is creative 24 hours a day. Much interaction is delightfully spontaneous—conversations, meals, sitting around an outdoor chiminea. There are also movies, parties, museum visits and gallery openings. And it’s not just about art—If we are in need of something, a request goes out on the community email (a ride, a pet watched, an extra pair of arms). If we have something to share with our neighbors, a similar email goes out. Frequently I come home to flowers (Rufiya!), some food treat left outside my door or an invitation to dinner. Sometimes I feel as if I have found my Oz (as in, Land of).

I am also doing my part to maintain good health by staying active; walking remains one of my essential pastimes. I am always shooting photos on these jaunts (my camera being my iPhone!) and shall soon be printing and displaying a large number of these images on the wall outside my loft.

Pipe dreams

Pipe dreams

In addition to exercise, I pay careful attention to how much I sleep. An interesting side effect of this therapy is that at higher doses it seems to induce a state similar to sleep deprivation, which might explain some of my cognitive challenges early on. At this lower dose I have few troubling side effects (neuropathy and some arthritis—still to be determined if the latter is drug related). However, I do require a lot of sleep—a minimum of ten hours nightly.

I am also increasingly mindful of what I eat. Sugar and white bread are for special occasions only, meat is kept to a minimum and vegetables rule. I have a plot in a community garden and a raised bed here at the lofts as well, so the salads I eat each day are grow your own.

Writing remains my greatest challenge; sadly it no longer comes easily. However, I am well aware that there is only one way to get over this hurdle—put one word in front of another.

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.

Loud uncle paired with a quiet whine

Yesterday was a humdinger. Two treatment-related mistakes in, I realized that not only am I over-overwhelmed, it’s time to do the big ask: Help!

Shortly after after posting my previous blog (and following much back and forth), Dr. Shaw and I decided that canceling my mediation was not a good idea. The prospect of getting three lawyers to readjust their schedules just felt too daunting. And, until we reach a settlement, I am still completely dependent upon David financially and that is not where I want to be.

Alice (Dr. Shaw) very kindly opined that medically it would be okay to wait a week. I emailed back that I would then delay wash-out and continue taking my Xalkori for one more week. This was her adorable response:

Yes. Twice per day! 🙂

Well, evidently I overdid it by one pill, and because of that the trial start date could be delayed (really?). That was mistake number one. The second screw-up was getting confused as to the time of a scheduled MRI and arriving fifty minutes late. They graciously squeezed me in but it easily could have meant another trip/potential delay.

So let me describe my little day from hell. I was up at 6:30 am with the intention of getting on the road by 7:30 for a 9:30 am dermatology appointment. A mere 24 hours earlier I had been looking at my left shin with my glasses on. I have very long legs and increasingly poor eyesight and if my glasses aren’t on, anything below the knees is blurry. Well, there’s a mole mid-shin that a dermatologist at MGH has been watching, and what I saw when I looked closely was concerning—particularly the numerous small black spots that now peppered the surface of this little ‘beauty spot’. I had a basal cell cancer removed at the age of thirty and my father Ollie had numerous basal and squamous cell cancers as well as melanoma. My chart must have me ID’d as high risk, because when I called for an appointment they marked it urgent and got me in yesterday.

Anyway, that’s the back story. I got on the road by 7:45 and realized I had missed Peter’s 7:20 wake-up call. Placed that–we’re getting this routine down, and as silly as it may seem, I love speaking to him briefly each day. And then I settled into what is always a horrific commute. What can take half an hour turned into and hour and a half. I got to dermatology just before my appointment. Fifty minutes and five magazines later I asked the receptionist if I’d be seen soon—as I had more appointments over at Yawkey starting at 11 am. Oh dear. Seems she forgot to let them know I was there…she was very apologetic and I was seen shortly thereafter but it was some additional stress I could have done without.

Anyway, one look at the mole and the dermatologist said ‘biopsy it’. His feeling was that it represented a basal cell, but given the pigmentation and appearance, melanoma could not be ruled out until the pathology report came back.

I had a punch biopsy performed and I will hear the result in seven to ten days. As the doctor said (a wee bit too glibly, I felt). ‘You don’t want to hear back from me.’ If a nurse calls, I will know it is reassuring news. If it’s the doctor, do you think hanging up would make it go away?

I had to practically run back to the Yawkey building (a challenge at this point) as an Echocardiogram was scheduled for 11 am. I was ten minutes late and breathless to boot, but the test proceeded anyway. Evidently I shall have these periodically during the upcoming trial, as there have been some (asymptomatic) reports of prolonged QT interval.

After that, it was labs and an EKG on Yawkey 7B. I spoke to the trial nurse and my scheduler, and ended up with just enough time for lunch before I had to begin fasting for my pre-trial abdominal CT scan. I enjoyed my rushed meal but for dessert I had a brain fart—thinking I had time to sit in the MGH cafe and browse on my laptop before heading over to Chelsea where the scans were scheduled. Oops. At 3:20 I realized my brain MRI was supposed to occur at 3:15. I placed an apologetic phone call and did my best to rush over—something that is impossible at that time of day. Forty five minutes later I arrived at Imaging in Chelsea and (because sometimes you do what you have to do), drank one of those hideous barium shakes. I did beg off the second one.

Well, it looked as if my MRI would need to be rescheduled, but bless their hearts, they squeezed me in. It was almost 7 pm when I left. Exhausted.

So here’s the ask. I’m an independent sort by nature and a good deal of my journey with cancer has been rather solitary. Sometimes that has sucked but mostly I have managed (got my own back sort of thing). However, I confess to harboring a small amount of envy for those cancer patients who have a lot of support. Medically I’ve got the best squad a girl could ask for but I’m thinking I could use a little…Team Linnea. Family/friends/folks who might be willing to go to appointments with me. I’ve got some long ones coming up as I start the trial and it is always easier with company.

As soon as it is finalized, I am going to publish my schedule. If you’d like to spend a day in the life of a patient in a phase I clinical trial, don’t be shy! All comers welcome!

And while you’re at it, please cross your fingers that the skin biopsy comes back benign (best) or basal cell (better than the alternative). I don’t need any more wrenches thrown into this affair. My son August sent me this e-card, which nicely sums up my current sentiment:

10152646_10152422082198708_4231432561548744429_n

 

 

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…