Tag Archives: Alk mutations

A Bear behind

I’ve been gone for awhile now and I feel a stranger in my own blog. I apologize for such an extended silence—I know that in this community the lack of an update is worrying. So let me start by saying I’m okay: not exactly jump up and down great, but hanging in there.

By way of explanation; I am happy, happy, happy. Mentally, I have never been better. However, physically the situation is a little more complicated as it would appear I’m not responding to treatment. Although I’ve not had a CT scan since starting back on Xalkori, my cough, nocturnal bronchorrhea production and a troubling shortness of breath suggest that my cancer is spreading. In a few weeks, I shall likely start my third clinical trial for an inhibitor that targets both ALK and ROS-1 mutations:  PF-06463922.

I am mindful that it is a blessing to continue to have options. I am also entirely cognizant of the fact that if I don’t respond to the trial drug, those options will be rather limited. It is a sobering realization and yet I continue to focus primarily on the positive aspects of my ongoing survival.

For instance, yesterday was not only Easter, it was Peter’s seventeenth birthday. I was diagnosed with lung cancer in 2005 just before Peter turned eight; two weeks ago I quietly marked nine years of surviving post-diagnosis. Happy Birthday Peter and I am thrilled to be able to celebrate with you!

Life really is remarkable—in all its ups and downs. My own has been topsy turvy for some months now and at some point I felt the need to pull back from blogging and simply concentrate on the day to day business of restructuring existence; more on that later.

First, a little personal history: it was just over fifteen months ago when I resumed chemotherapy. Simultaneously, my marriage was hitting the skids. I felt sick, scared, lonely, trapped and was well on my way to becoming someone I find intolerable—an unhappy person.

Without a doubt, I had hit my personal low point and for the first time, I considered stopping all treatment and simply saying enough. Briefly, that. Instead I took a step back and assessed the situation. It wasn’t going to be easy, but I began to formulate a plan to not only survive, but to prevail.

pre·vail
priˈvāl
verb
1.
prove more powerful than opposing forces; be victorious.
“it is hard for logic to prevail over emotion”

My first priority was Peter’s immediate future, and to that end much hard work went into the private school process. As you know, he was accepted to Phillips Exeter Academy where I am happy to report he is thriving. I am particularly proud of the fact that he qualified for the novice crew team this spring—it turns out rowing is something that Peter really enjoys and has the potential to be quite good at.

My second goal was rather short term, and that was to get through chemo. I did, and after six months of infusions, enjoyed almost nine treatment-free months. Even though my cancer progressed, my body got stronger, and I really needed that physical strength when it came time to move.

And what a move it was. Deciding to separate and ultimately get divorced after more than twenty one years of marriage was huge; particularly under the circumstances. Obviously, it is not a decision that was made lightly.

My dear friend Melinda has remained my guardian angel throughout this process, offering counsel as well as emotional and financial support at various junctures. We’ve been pals (and partners in crime) for almost five decades now and I simply can’t imagine life without her.

I’ve also had some help from a surprising source. At that low, low point many months ago, lying in bed one night after chemo, I felt the need to be both protected and held. I searched my imagination for the appropriate companion and found that it was a bear that I was looking for. I could not only see this bear, I could feel its presence beside me. And I asked this large animal to hold me close; to keep me safe. In exchange for this protection, I told the bear that when I died, it could eat me.

Now this may sound really bizarre—a little crazy even. But, to me it was a perfectly fair exchange. I truly believe that we are all part of one living system, and that when we take our final breath, our energy is dispersed. To be eaten by another creature is a logical repurposing of energy—we do it ourselves every time we dine on something that was once living (plant or animal). I realize some of you may be horrified—and once again I offer my apology. However, know that for me the current tradition of embalming a body is anathema–and cremation is not much better. If I cannot be eaten, I would rather decay and become part of the soil.

Some weeks ago, there was a social quiz on Facebook–‘What is your spirit animal?‘ I took the silly thing out of curiosity. It was already obvious to me what my spirit animal was and I was certain the quiz would get it wrong.

Well, surprise, surprise, my spirit animal is The Bear. Ha! The questions really were seemingly random, but somehow, someway, it turned out right.

Bear really does have my back.

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.

The world loses a very bright light: Sarah Broom

Sarah Broom:  photo by Shane Wenzlick (phototek)

Sarah Broom: photo by Shane Wenzlick (phototek)

Last Thursday I was up before the robins, in order to get Peter ready for a 5:30 a.m. departure for Washington DC with his classmates. After rousing our sleepy boy, I quickly scanned through my inbox. There was a message from my friend Sarah Broom, with the subject In memorium. I hoped to hell it was the title of a new poem but my heart was heavy as I opened the email. It had been sent by Sarah’s husband, Michael. Sarah had died.

As I hurried Peter out the door, I kept the news to myself. Already reeling from the Boston Marathon Patriot Day bombings, I felt an intense need to protect Peter from additional sadness and worry as he went off on what was intended to be a holiday.

After returning home, I crawled back into bed and fell right to sleep. When I awakened several hours later, I immediately recalled a dream:  I’d been sitting on the floor of a closet that was not mine. Most of the clothing was gone, but there were some beautiful objects on the shelves, shrine-like in presentation and fashioned from polished brass and ivory colored lace or coral. The door to the closet opened, and a stranger asked me what I was doing there. I gestured to the space around me and said, “I am so lonely, and this reminds me of the forts we built as children.”

For the past few months, I had spent many a night imagining Sarah, Thao and myself running, climbing, jumping, flying. Young and strong again, with scabbed knees and cheeks flushed with pleasure. Invincible.

My special relationship with Sarah began almost five years ago. When I took my initial dose of crizotinib in 2008, I was the fourth person in the world with NSCLC and an ALK mutation to do so. Sarah, who lived in New Zealand, had directly preceded me on trial as number three. Through social media and a common acquaintance (number two in the trial, our friend Kevin), we began a dialogue.

Initially, our communication was infrequent. With time, emails segued into long telephone conversations. A little over a year and a half ago, Sarah came to Boston for treatment, and we were able to spend some actual time together. Although she soon returned home to New Zealand, our sessions over the phone continued with renewed intensity.

Sarah was brilliant; a poet with a doctorate in English from Oxford in addition to a master of arts in English from Leeds University. Hers had been a tough road: Only thirty five years old and pregnant with her third child when diagnosed with lung cancer, Sarah advocated fiercely for the sort of care not readily available in New Zealand. For more than five years she endured the side effects of multiple treatments and a hopelessly aggressive cancer, always with unfailing optimism, courage and devotion to her family.

In our lengthy chats we talked of the things most friends do:  love, life, relationships. Books, creativity, our hopes and dreams. But we also discussed our illness and, of course, dying. In a way that was extraordinarily open and free from pretense.

I loved Sarah and felt intensely connected to her. I knew she was dying. In fact, the afternoon before I opened the email from Michael, I felt a certain shift in the universe and was certain that it had to do with Sarah.

I am devastated. However, my loss pales next to that of her family. Also, I know that Sarah had made peace with what was coming and that she is now free from suffering. She will live on in our hearts and in her own words, and although the earth may now be a bit dimmer, the sky is brighter still.

And when I walked out last night

it was cool, the coldest night this winter,
and when the stars asked me to join them
in the ache of their bareness, I let them
take me, and they carried me between them,
clusters of stars all along my body, and I arched right back and pointed my toes and fingertips,
and was as long as ever you could imagine
and they did not let me go.

by Sarah Broom

 

Hits and misses

From the inside looking out this morning

From the inside looking out Saturday morning

The blizzard rolled in right on schedule Friday, but fortunately, we were graced with a big dump of snow but never lost power; nature in all its glory is sometimes best appreciated from a snug environ.

I had my third infusion of pemetrexed/carboplatin on Thursday. As the last round turned out to be so manageable, we decided to ramp up the platinum a bit, and for the first 48 hours, I felt pretty good. However, yesterday I skipped my afternoon zofran and began ramping down on the dexamethasone as well. By early evening I was seriously nauseous, and experiencing some pretty intense heartburn and a headache. I took a compazine, and when that had no effect, added zofran and dexamethasone. Soon I was feeling better again–I can’t begin to imagine how difficult chemotherapy must have been before the advent of steroids and antiemitics. Thanks to an ambien, I was able to sleep, and hopefully today I can again back off on medication.

So—lots to share. I think I’ll start with the visit to the Avon Breast Center at MGH. After the concerning mammogram on Tuesday, a sterotactic biopsy was scheduled locally. However, I immediately contacted Dr. Shaw and asked about having a consult at MGH instead; if the situation required treatment, it only made sense to coordinate my care right from the start.

Well, the magical Dr. Shaw got me an appointment on Friday afternoon. Because of the impending storm, it needed to be cancelled, but they were able to squeeze me in Friday morning instead. Once there, I met with the surgeon, who performed an exam and immediately found a lump (that had been missed previously) in my left breast as well. And then I had some more mammograms done, this time using a 3D imaging machine. After a short wait, more close-ups on my right breast, and then an ultrasound of my left breast.

The conclusion: likely benign fibrocystic changes in the left breast and a 99.5% chance that the microcalcifications in the right breast represent non cancerous changes. So I won’t need to undergo a biopsy and instead will have a repeat mammogram at the Avon Breast Center in six months. The moral of this story would seem to be, whenever possible, (and particularly when your medical history is complicated), get yourself to a center with the best diagnostic apparatus available as well as the expertise to interpret those results.

So that was great, great news. A good thing too, as my scan prior to chemo on Wednesday was not quite as encouraging:  “Mixed treatment response with interval decreased groundglass opacity in the left lower lobe, though slightly increased let lower lobe consolidation and slightly increased mixed solid ground/glass opacities in the right upper lobe.

In addition, the results of the initial genetic sequencing of the ALK mutation are in (it remains to be seen if full genetic sequencing can be performed, as my biopsy  sample was quite small and will require a cell line to be grown in the lab—something that may or may not be possible). The secondary mutation that showed up post crizotinib (S1206Y) is nowhere to be seen. In its place is G1202A, also a missense mutation on the solvent front, but unfortunately one which confers a good deal of resistance to all ALK inhibitors. This will potentially limit treatment options, and the mixed treatment response may necessitate a change of course sooner rather than later.

I am focusing on the fact that except for the few days post chemo, I am stronger than I have been in months. In fact, although I still have a small amount of wheezing and an occasional cough, the copious amount of  nighttime sputum has disappeared. Hopefully the resolution of this troubling side effect correlates with the positive response. However, given the mixed response, I do wonder if there is a chance that the resolving groundglass opacity might have been an inflammatory response to the LDK378 (pneumonitis has been observed as a rare side effect in patients treated with crizotinib).

At any rate, there is no way to know and the important thing now is that I am feeling better. One more round of pemetrexed and carboplatin and then, unless a subsequent scans reveals significant progression, I will go on pemetrexed (Alimta) maintenance. One round, one week, one day at a time.

Me again

I would like to thank all my friends from INSPIRE for sharing your individual stories. I believe by speaking out you are empowering not just yourselves, but others who have been impacted by this devastating disease, lung cancer.

Now it’s time to update my own status.

I met with various members of my team last Wednesday. Due for a scan in two weeks, they bumped it up to that day after I described my growing anxiety over steadily worsening symptoms; cough, fatigue, and bronchorrhea.

Bronchorrhea is an uncommon symptom associated with the variant of lung cancer I have, mucinous bronchioalveolar carcinoma, and it is making bedtime miserable. The moment I lay down, my lungs start to crackle. For the next 30-40 minutes, I cough, hack and spit as I clear 2-3 ounces of frothy mucus from my windpipe. It is exhausting and at times frightening as well. There is no antidote for this sort of bronchorrhea, other than treating the underlying cause, the cancer itself.

Although some of my cancer is yet responding to treatment, it is likely that a new clone or mutation has been selected out for; one that is resistant to LDK378. This scenario is suggested by the appearance of my scans, as my cancer is returning in a very different pattern than it has previously. Rather than a gradual consolidation of diffuse nodules, much of what we are now seeing resembles billowing smoke, and is likely responsible for the bronchorrhea. However, the only way to confirm this hypothesis is to retrieve some cancerous tissue.

Fortunately, a biopsy is now considered doable and a core sample shall be removed from my left lung on 12/12/12. In addition, I will take my last dose of LDK378 on 12/11 and one week after the biospy, I will start chemotherapy; four rounds of Alimta/carboplatin followed by continuous maintenance with the Alimta alone.

When I underwent chemotherapy in 2005, I had a port installed. As it is a foreign body, there is a risk for infection and there are now a limited number of antibiotics that I can tolerate, so at least initially, I shall forgo the port. Should infusion through an IV prove too difficult, we will reconsider.

So that’s the scoop, from the medical perspective.

YES!

This one’s a YES!

On Monday I went to Boston for my six week CT scan. My mom, Evalynn and stepfather, Jim were visiting from their home in Utah and they came along. After having my labs drawn, Dr. Shaw and Margeurite (all time favorite nurse) were kind enough to step into the waiting room for a brief introduction. It meant the world to my parents, and made the day a special one.

That evening Alice (Dr. Shaw) called after having viewed the CT scans along with two radiologists. The results were a bit astounding–there appeared to be no significant change. This news caught me  a bit off guard as I had been preparing myself for anything except stability. Now I had the option of staying on drug for six more weeks. It took a couple of seconds to adjust my mindset (cancer really teaches you to think on your feet) before deciding yes, this was the obvious choice. As we ended our conversation, Alice cautioned that she would receive confirmation once measurements were taken and the actual report was written.

Yesterday Alice called once again; my scans were really, truly, stable. So, here I am, on the edge, but holding. And I am fine, make that better than fine, with my current status. I’m on a journey, and this traveler plans to take her time. It’s going to be back roads, blue highways and the scenic route for me.

Six weeks notice

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This is day two of a week long visit from our twenty six year old son August. We hit the ground running yesterday, with a trip to Massachusetts General Hospital. David and Peter came along as well, and August got his first peek into this particular window of my life.

It turned out to be a bit much for him. A lack of geographical proximity has provided August with an emotional distance from my cancer; accompanying us on a visit to the hospital brought it all home, and shortly after we were shown to our private room, he broke down.

When Dr. Shaw came in, it was just David and myself. She asked some careful questions as to how I was feeling. Great, I said; heaps of energy and rock solid resolve. But when I lay down at night, the crackling/wheezing in my lungs was a potent reminder of where I was heading.

I had in fact just arrived: in clinical trial parlance, progression. Defined as (not 30%, as I stated in an earlier blog–now corrected) 20% progression from the nadir–or the least amount of measurable cancer in my lungs since starting trial. To break it down another way:  A positive response in a clinical trial is defined as a 30% or greater reduction in tumor burden. Ultimately, my cancer decreased in measurable area by 63% ; that was my personal nadir. My latest CT scan shows a 21.8% increase from that lowest point. However, I still have approximately 40% less cancer than when I started this trial.

My cancer is returning or progressing relatively slowly and I continue to maintain an exceptionally high performance status, (ability to complete daily tasks). If this were a standardized rather than experimental treatment, I would undoubtedly eke several more serviceable months from it.

As a participant in a clinical trial, I am bound by protocol (literally). Happily, Dr. Shaw pulled a rabbit out of the hat; Novartis has agreed to let me to stay on LDK378 for one more cycle. We now have six weeks to figure out where to turn next, and that softens the blow considerably. Soon, I will embark on a new adventure. In the meantime, life will be lived to the fullest.

After saying goodbye to Dr. Shaw, we collected the boys and grabbed a late lunch. Not deterred by the fact that it was already half past three, we continued on to Ipswich and Crane Beach.  Arriving just as the crowd for the day was thinning, we were met by clear skies and balmy weather. August and Peter took a quick dip in the chilly Atlantic and soaked up the late afternoon sun while David and I walked the length of the beach as the tide came in.

But we weren’t finished yet; August had requested dinner at the Clam Box, where the four of us worked our way through two enormous plates of fried clams.

Stuffed, but with much food for thought still on our plates, we headed home.

Cover girl and a back story

I was in Boston on Monday for labwork, and just adjacent to the elevators is a wall rack where they display current issues of the MGH Cancer Center magazine. On the cover was a familiar image, a CT scan of lungs pre and post crizotinib. Although not identified, they are my lungs. So, I guess that makes me a cover girl.

While there I also paid a quick visit to my friend Sarah Broom (a poet: https://lifeandbreath.wordpress.com/2011/09/06/if-the-world/), who has traveled from her home in New Zealand to enroll in a Clinical trial at Massachusetts General Hospital. We had gotten together the previous week for lunch and on Sunday Evening she’d driven to our house in Amherst with her brother Alex, who was visiting from Australia to be with Sarah as she started trial (her husband is at home with their three young children). The meal on Sunday (local lobster) was really pleasant and Sarah’s brother is every bit as charming as she.  Afterward they managed, for the most part, to stay on the right side of the road (which would be the wrong side of the road ‘down under’) on the drive back to Cambridge.

But more about Sarah and that back story. Back in August of 2008, when my oncologist (at that time, Dr. Tom Lynch) told me that as a newly identified ALK ‘mutant’ I was eligible for enrollment in the phase I trial for PF-02341066 (crizotinib), the trial was transitioning from an initial focus on gastrointestinal cancers to lung cancer. Only one other lung cancer patient had been on trial at MGH, and he had died within weeks of enrolling (his lung cancer was responding to crizotinib, but his disease was ultimately too widespread). Although this news did nothing to alleviate my fear, it also didn’t dampen my enthusiasm; possible death (trial) versus certain death (continued tarceva, chemo, or no treatment at all).

It was but a few weeks later that I became aware of Kevin Brumett, after my husband conducted an internet search for information on ALK mutations. Kevin had posted on Inspire, the online site which I soon joined and continue to participate in. I contacted Kevin, also an ALK mutant. He had been on trial at Dana Farber for some weeks and had recently gotten back his first scans, which showed significant improvement. Kevin immediately became my beacon; this courageous and incredibly optimistic young man who was just ahead of me on this path to who knew where.

I started trial on October 1, 2008 and soon thereafter Kevin told me of another fellow traveler, Sarah Broom, in New Zealand.

Unfortunately Kevin developed a large number of brain metastases early in 2006, and it was at that point that it began to be clear that crizotinib might not cross the blood/brain barrier. Several months later, Kevin died and Sarah and I fell out of touch for a time as well.

Perhaps a year and a half ago we began emailing again and eventually spoke on the phone as well. Now, in a curious turn of fate, we are in the same place once more, each enrolled in clinical trials. LDK378, which is a second generation ALK inhibitor for me, and AUY922, an HSP-90 inhibitor for Sarah. There is a good chance I will eventually go on AUY922 and she on LDK378. Talking at dinner the other evening, we figured that we are number three (Sarah) and number four (myself) in the world to have gone on crizotinib–(although I might have to share number four with another individual who went on trial either the day before or after me at MGH).

It’s all rather remarkable. Our friendship, begun in the most unlikely fashion, the distance we have each traveled (more metaphorically speaking when I refer to myself, but in Sarah’s case, coming from New Zealand, the real deal). The fact that we are both still here, trudging forward, looking for sure footing.

As for those liver enzymes; falling. SGPT is 66 and SGOT is 62. And the wine tasting party? So much fun (hosted by the same fabulous friends who made 11/11/11 special for Pete and I). Part of the evening involved a little contest; we were served pairings and asked to distinguish between labels/vintages. Well friends, my fellow contestants were all quite able, but out of a field of twelve, I tied for first after getting them all correct. My secret? Not mere luck, but rather a reliance on instinct (a superior tool in matters of the senses–but I was nonetheless surprised as well as mighty pleased by my little coup).

My prize? A  lovely bottle of sauterne and liver enzymes headed in the right direction. Win win.

Viewing the actual scans

I had my appointment with Alice (Dr. Shaw) on Monday, and we were able to view the images of the before and after scans together. They do indeed appear much improved. In my left lung, there remains a hazy footprint of what was formerly an area of consolidation. It could represent inflammation or, possibly more likely, unresolved cancer. The right lung (my ‘good’ lung), looks almost entirely clear.

It is important to remember at this point that A. we are in the dose escalation phase for LDK378, and the therapeutic dose may not have been reached yet, and B. this is not my first exposure to an ALK inhibitor and my cancer had acquired resistance to crizotinib (Xalkori).

All in all–a very respectable response. We will be watching my next set of scans closely and also positioning for dose escalation as soon as possible (there are certain constraints per protocol–and it will be six weeks or so before escalation is a feasibility). Update–Alice received the measurements for resolution (which is factored in a way that is very reliant on degree changes in borders of tumor rather than density) and it is 19%. This is a good place to remind all that I learned a long time ago not to be defined by numbers. I prefer qualitative to quantitative analysis, and symptomatically, I am much improved.

Life goes on. I’ve been busy adding to my portfolio of fallen leaves, although it has not been a stellar season for leaf peeping. They take the fall colors quite seriously in these parts, and there was a story on the front page of the local paper detailing the factors behind the disappointing showing. A very wet spring, coal tar spot, hurricane Irene (which atomized so much salt, it was found on the leaves of maples twenty miles inland). I believe myself to be rather adept at finding something beautiful under any circumstance though, so here goes:

YES! The results of the latest scan are in

I have been feeling well for the past week. My cough has resolved, my energy is up and the chills are gone. All good signs.

This past Monday I underwent the bronchoscopy. Quite uneventful aside from the nasty numbing stuff they squirt up your nose and down your throat prior to the exam. “This is going to feel like you’re drowning” counseled the attending nurse with no apparent irony. And it did.

On Thursday I was back in Boston for my chest CT scan. Although I’d been given a bye on barium for the past two years of the crizotinib trial, I am once again required to drink two ‘milkshakes’. As I’ve explained in some previous detail, I am oblivious to most of the discomforts involved in my day to day medical care. You don’t even want to know how many times I get jabbed with a needle. However, I have never liked putting something in my mouth that I don’t want there. I am, in fact, almost phobic in this regard. Oral contrast is tough for me, and hopefully I can once again talk upper management out of the necessity of such an (onerous) detail.

I had taken the bus in, and David picked me up at the hospital after my exam and we continued on to Randolph, where my oncologist, Dr. Alice Shaw, was being honored by the American Lung Association. Also in attendance were three of Alice’s other patients, including Chris and his wife Karen, pictured on the rather dramatic staircase of the venue. They have an adorable daughter who is just two, and Chris has done quite well on crizotinib. I wish him many more years of success.

Chris and Karen

Bright and early yesterday morning, Alice called and said she had reviewed the scans and that they looked really good, and as well the bronchoscopy was completely negative for any findings. Some hours later she forwarded the CT report, which frankly sounds even more positive than what I’d expected from her description. It reads:

FINDINGS:

Lines/tubes: None. Lungs and Airways: There is improved consolidation in the left upper lobe and lingula with residual ground-glass opacities, which had been previously chronic and progressive and are considerably improved from 8/31/2011, consistent with improvement in lymphangitic carcinomatosis.

There is a stable 3-mm nodule along the minor fissure. The surrounding smaller nodules have resolved. Pleura: There is a stable small left pleural effusion.

Heart and mediastinum: The thyroid gland is normal. No significant mediastinal, hilar or axillary lymphadenopathy is seen. The heart and pericardium are within normal limits. There is mild pericardial thickening, which appears more prominent compared to 8/31/2011.

IMPRESSION:

History of non-small cell lung cancer status post left lower lobectomy. Improvement in lymphangitic tumor spread in the left lung. Stable indeterminate 3-mm nodule along the minor fissure. Slightly increased mild pericardial thickening.

I like how many times improved or a variation thereof is used in the first paragraph (three), and the addition of considerably is even better. Stable appears twice in the second paragraph. And in IMPRESSIONS, the key words are improvement, stable, and slightly increased. This is a very good, considerably improved, report. Yippee!

And now for some definitions of less than familiar terms:

lymphangitic carcinomatosis:  A condition in which cancer cells spread from the original (primary) tumor and invade lymph vessels (thin tubes that carry lymph and white blood cells through the body’s lymph system).

This is the definition from the National Cancer Institutes online dictionary. From Medscape reference we get this explanation:  The lungs are one of the most common targets for metastatic disease.  Most pulmonary metastases are nodular, but a significant minority is interstitial. Lymphangitic carcinomatosis (LC) refers to the diffuse infiltration and obstruction of pulmonary parenchymal lymphatic channels by tumor.

Interpretation? I believe it is simply another way to describe metastatic lung cancer.

I also looked up the significance off mild pericardial thickening (the pericardium is the membranous sac enclosing the heart), and will discuss it with Alice before I attempt to interpret this finding.

Bottom line; it is a very good report. I have to wonder if I really did have an infection that the latest course of levaquin vanquished. Whatever the underlying cause of my initial malaise as well as the less than stellar PET scan, it is now evident that the LDK378 is having it’s way with my cancer. I’m tripping over myself with gratitude, and well, excitement. The personal impact is obvious, but I’m focusing on the big picture as well; perhaps LDK378 will prove to be yet another viable treatment option for those who harbor an ALK mutation. That would be really be something.