Category Archives: Scans

Scan report: 4/29/2013

Posted on May 11, 2013 | 14 comments

I’m delighted to write that I have not posted a blog simply because I have been too busy living my life. Over the next few days I hope to rectify the lack of communication by playing catch-up. I may as well start with my last scan—being presented here in unadulterated fashion. Couple of notes; for the uninitiated, ground glass refers to patchy or lace-like areas which represent some form of inflammation and/or cancer. We always hope for the former, but in my case, it is likely the latter. Also, the pericardial effusion is not actually new—but rather has been noted for some time, as has the pleural effusion:  no biggie.

linnea radiology 4:13001As for what this all means; in short I continue to have progression. Not marked, but Dr. Shaw felt ‘little significant change’ was not quite adequate either. However, as I am tolerating the alimta and feel pretty well overall followed by one week of feeling just about fabulous, there is no discussion about changing up therapies yet.

Also noted at my appointment was the fact that I have gained fifteen pounds in four months. I was pretty skinny coming into chemotherapy, so this is a good thing. However, at least some of the weight is due to steroids, and therefore not evenly distributed. I’ve got a bit of moon face going on, and my fingers and toes are sorta chubby—merely enhancing my resemblance to a big baby (more about that later).

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Posted in Scans, Treatment

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The devil is in the details

Posted on March 30, 2013 | 3 comments

It has been a long winter, but the last of the snow is melting rapidly. In New Hampshire, we are just beginning mud season.

L1020809There have been other harbingers of spring, starting several weeks ago with the silver spigots and buckets of maple sugaring. One of our neighbors has been collecting sap and hauling it down to what looks like some crazy distillery in the woods, complete with a wood frame covered in tyvek, a trash barrel full of empties (miller lite) and a blaring boom box. Just about 24/7, he and his cronies have been evaporating down three giant pans of sap over a wood fire. It’s a labor of love, maple syrup, with a forty to one working ratio (sap to syrup).

However, my neighbor, who has a creative approach to life in general (I speak euphemistically), has found his own way to ‘stretch’ the product. A few days ago, trying to walk off the effects of my fifth infusion, I wandered on down to the maple syrup factory. My neighbor’s cousin was manning the pans, and I asked him if the massive pot of clear liquid on the ground was virgin sap. Nope, he said—It’s olive oil. After I wondered what on earth they used olive oil for, he looked me in the eyes (I’m making that part up—he specifically did not look me in the eyes) and said “It’s hard to make that much syrup.” And then I understood. They were cutting the maple syrup with olive oil.

The moral of this part of the story is: if you’re in New Hampshire and a guy named Ray asks you if you’d like to buy some maple syrup, just say no. Firmly.

Speaking of details, prior to my infusion of alimta a week ago, I got the hard copy of my recent radiology report:

“Persistent bilateral multifocal solid and groundglass opacities without significant interval change to 2/4/2013.”

There’s not a damn thing I like about the first seven words, which in plain english simply mean that there is yet cancer scattered throughout both of my lungs. However, at this stage of the game, one focuses on the second half of the sentence: without significant interval change. In two weeks, I will have my second maintenance infusion of alimta, followed by another CT scan, and then a reassessment of the situation. 

In the meantime, I’ve finally kicked the virus and am feeling stronger again. Today I took a rake to the gardens for an hour and also went on a walk. I’m now exhausted but in the good sort of way that comes from physical exertion; I shall sleep soundly tonight.

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Posted in Chemotherapy, Scans, Treatment

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Hits and misses

Posted on February 10, 2013 | 32 comments
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.

32 Comments

Posted in Attitude, Chemotherapy, CT scans, Scans, Treatment

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Power on

Posted on November 3, 2012 | 9 comments

My every-six-week chest CT scan in Boston was scheduled for 2 pm on Monday, the day Sandy was coming ashore. As luck would have it, the MBTA  had announced that they would be shutting down at exactly the same time, and many of the hospital staff rely on public transportation. So I gambled on going in early, which turned out to be a very good thing. Yawkey was running on a skeleton crew, but many patients had also cancelled, so I was able to get my scan and be on the road again by about 1:30 pm. The storm was really starting to pick up as I headed north and there were a few dicey moments when the wind would come blasting over a ridge and hit my car with enough force to shove the vehicle sideways.

I made it safely home shortly before three. David was baking cookies (for cheer and courage in the days to come). Generator, candles and bottled water at the ready, we watched the weather channel as the storm howled outside. After flickering on and off for hours, our lights went out for good at 7 pm.

In anticipation of the storm, school had been cancelled on Monday and remained closed on Tuesday. That afternoon Peter and I needed to go back to Boston, as he had an appointment in the city. There was little traffic, but otherwise no apparent ill effects from Sandy. We enjoyed a warm meal and after checking on the status of the power at home (still out), camped out at a Starbucks for several hours so that Pete could work on homework.

Wednesday brought lower temperatures and a return to school for Peter but still no power. Our small (and noisy!) generator took turns heating the aquariums and cooling the fridge, but the lack of heat and running water were becoming more problematic. Peter and I decided to spend Wednesday night at the Comfort Inn. David came over for a shower, but returned home to tend the generator (as well as the dog and aquatic life!).

After dropping Peter off at school on Thursday morning, I returned to the hotel for a nap and then after check out, stopped in yet another Starbucks to suck up some wifi (and suck down a mocha while I was at it). At 2pm I got the call I had been waiting for:  power on!

On the outer edges of Sandy’s reach, we experienced only a few days of inconvenience; temporarily deprived of creature comforts that we have come to take for granted.

My heart goes out to those for whom the storm’s impact has been far greater.

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Posted in Scans, Treatment

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Playing the numbers

Posted on January 19, 2012 | 26 comments

Slow, but steady. The results are in from my recent CT scan and 40% resolution has eased on up to 45%. A significant five percent, as the negative side effects (gastrointestinal issues) from LDK378 have increased in intensity as well.  Dr. Shaw and I had spoken about possibly moving my dose back down to 400 mg if there had been no incremental improvement in tumor burden.

The Radiology Report is less cheering, although certainly is not what I would characterize as a bad report. It reads:

IMPRESSION:  Persistent groundglass opacities in the anterior and inferior left lung and along the right minor fissure. The opacities in the left lung are slightly more prominent. There are no definite new lesions.

It’s all a curious algorithm; this response/non-response thing. “Tumor size has traditionally been estimated from bidimensional measurements (the product of the longest diameter and its longest perpendicular diameter for each tumor)” (quoted from an article in the Japanese Journal of Clinical Oncology) Basically, a linear measurement, which is quite dependent upon the outside diameter of a lesion, is used to estimate volume. Baseline measurements are taken at the onset of a particular treatment, and response (and/or stability or progression) is assessed by comparing successive scans to the initial chest CT. Evidently my earlier 40% (https://lifeandbreath.wordpress.com/2011/12/14/big-four-oh/) was not the cutoff for partial response but rather exceeded it. I should have done my homework. From Wikipedia:

Evaluation of target lesions

  • Complete Response (CR): Disappearance of all target lesions
  • Partial Response (PR): At least a 30% decrease in the sum of the LD of target lesions, taking as reference the baseline sum LD
  • Stable Disease (SD): Neither sufficient shrinkage to qualify for PR nor sufficient increase to qualify for PD, taking as reference the smallest sum LD since the treatment started
  • Progressive Disease (PD): At least a 20% increase in the sum of the LD of target lesions, taking as reference the smallest sum LD recorded since the treatment started or the appearance of one or more new lesion

Odd as well is the 5% increase in response coupled with the possible area of greater consolidation noted on the radiology report. Which to me illustrates the limitations of any sort of quantitative measurements; it is all seems a bit hypothetical/ best guess sort of stuff. Data collection. Bottom line, my lungs feel and sound pretty darn good.

The numbers on my labs are closer to normal as well; the oral iron supplement I began taking several weeks ago is helping.

The one concern of the moment is my liver enzymes, transaminases-SGOT and SGPT.

So what is a transaminase? From MedicineNet.com: The transaminases are enzymes that catalyze chemical reactions in the body in which an amino group is transferred from a donor molecule to a recipient molecule. (!)

SGOT is an acronym for serum glutamic oxaloacetic transaminase and SGPT for serum glutamic pyruvic transaminase. Just in case you wanted to know. What is really relevant is that they are enzymes in the liver and elevated values of either can be an indicator of liver inflammation.

My SGOT/SGPT values were ever so slightly elevated the entire time I was on crizotinib. When I went off treatment they fell to normal levels, but soon after my first dose of LDK378, the levels again became slightly elevated. After my dose went up to 500 mg, the values began to rise again.  My SGOT level peaked at 84 a week ago and is now down to 67. The normal reference range for SGOT is 9-32 U/L  (units per liter of serum–the liquid part of blood). My SGPT was at 79 last week and this week  topped out at 102. Normal reference ranges for SGPT are 7-30 U/L.

Hopefully the SGPT has peaked and will start to go down. In the meantime, a glass of wine in the evening is not an option. Sadly, we’ve been invited to a wine tasting party this very weekend (for the oenophiles out there, all with a rating of 93 or above). When I asked Alice (Dr Shaw) if I’d be able to participate, she said, “Wine tasting is just sips of wine, right?” “Well…” I replied, “it can be done that way”.  So I’ve been given clearance to slosh a bit around in my mouth. Just like the real sommeliers. I don’t believe I’ll be able to bring myself to spit it out though; that just wouldn’t be right.

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Posted in ALK mutations, LDK378, Scans, Treatment

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Big four oh!

Posted on December 14, 2011 | 29 comments

I had my second chest CT scan since starting on LDK378 a little over a week ago. The report from the radiologist was basically ‘stable’, But at a scan review with Dr. Shaw, there was clearly visual evidence of further improvement (lessening density of the ground glass opacities). The trial review board at Novartis must think so as well, because several days later Alice emailed to say I was now at the 40% mark, which is the cut off for a partial response. It’s not as clean in there as it was after I started crizotinib (Xalkori), at least not yet. But we’re working on it.

September of 2008/pre-crizotinib

November 2008/post-crizotinib

For comparison, here are the before and after images of my lungs in 2008. The left lung is actually on the right of each individual image. It is smaller than the right lung, because the entire lower lobe was removed in 2005, at the time of my diagnosis. Before I started the PF-03241066 trial (crizotinib, Xalkori), the remaining upper lobe of my left lung was getting pretty filled up with cancer, and you can see some activity starting in the right lung as well; particularly near the top.

August 2011/pre-LDK378

The image above is from a photograph I took of my chest CT scan as displayed on a computer monitor, so it’s not as clear as it could be. I’ve not included the two scans I’ve had since I started the trial, as I’m not certain if I am allowed to do that yet (as a subject now, not a patient, the rules are not the same). I’ve included this image simply to give you an idea of how much cancer had come back. Not as diffuse as in 2008, but well on the way and really rather dense in the bottom of the remaining upper left lobe.

So, what I can’t show you, but can tell you, is that the most recent scan is significantly clearer (and if you are considering percentages, 40% certainly sounds twice as good as the initial 19% resolution). I’m no longer coughing and my lungs feel fine.

This trial is in the dose escalation phase, and I entered at 250 mg. Per protocol, once the subjects at the next higher dose had gone without adverse events for two cycles (a cycle is three weeks long), I would be allowed to go up to that dose, or 500 mg. Last monday was my first day at the stronger dose. I’m hoping stronger=more effective yet.

So all in all I’m feeling well. Occasional bouts of diarrhea would seem to be a side effect, and I’ve become mildly anemic, which leaves me a bit rundown and intolerant to cold (not quite as rosy as I once was either). It would seem to be a mixed etiology of nutritional anemia and anemia of chronic disease, according to my labs (and my oncologist!). My hematocrit is 31.2 (normal reference range 36-46), my hemoglobin is 9.6 (normal reference range 12-16) and my MCV (mean cell volume) is 72 (normal reference range 80-100). My iron level is 18 (normal range 30-160) and ferritin is 6 (normal range 10-200).

In a subsequent post I will  go into greater detail about anemia (I’ve been reading up on it, and it’s rather fascinating).

So that’s the medical update. I’m off to eat some spinach.

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Posted in LDK378, Scans, Treatment

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Viewing the actual scans

Posted on October 28, 2011 | 8 comments

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:

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Posted in ALK mutations, LDK378, Scans, targeted therapies, Treatment

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well

Posted on October 10, 2011 | 22 comments

Darkness falls earlier and the leaves are turning. Already bursts of color litter the forest floor; soon it will be an almost fantastical carpet of yellow, pink, red, orange and purple. I have begun my daily treks, camera in hand, attempting to capture…

I feel as if some seasonal change is taking place for me as well.

This is not easy to acknowledge, but I had, beyond merely hope, almost an expectation  in regard to this current clinical trial. I visualized myself having a rapid response and returning, once again, to a period of good health. While on crizotinib, my lung cancer had seemingly melted away. This time, a model of my new mutation had been tested in the lab and shown great sensitivity to LDK378.

On Friday I had a PET scan to assess my progress thus far. The report read:

FINDINGS:

Overall mild decrease in size of intensity of uptake in opacities in the bilateral, left greater than right, lungs. No abnormal foci of  uptake are identified in the mediastinum. No other abnormal foci of uptake are identified.

IMPRESSION:

Mild interval decrease in bilateral lung tumor burden.

It is not a negative report. Nor does it indicate any sort of rapid response to the trial drug.

First, an explanation of what a PET scan is and does. PET is an acronym for positive emission tomography, and, as defined by Wikipedia:

“Positron emission tomography (PET) is a nuclear medicine imaging technique that produces a three-dimensional image or picture of functional processes in the body. The system detects pairs of gamma rays emitted indirectly by a positron-emittingradionuclide (tracer), which is introduced into the body on a biologically active molecule. Three-dimensional images of tracer concentration within the body are then constructed by computer analysis.”

“If the biologically active molecule chosen for PET is FDG, an analogue of glucose, the concentrations of tracer imaged then give tissue metabolic activity, in terms of regional glucose uptake.”

My PET scan before I started the trial was somewhat ‘hot’, meaning my lungs showed an ‘avidity’ (uptake of) the FDG-PET  (2-deoxy-2[F-18]fluoro-D-glucose positron emission tomography). 

The histology of my lung cancer is BAC, which generally shows only mild FDG avidity.

So what is going on here? There are several possible answers. A PET scan essentially measures metabolic activity, the theory being that a highly metabolic area shows a greater avidity (or eagerness) for glucose. Neoplasms tend to be highly metabolic. However, several sources of inflammation could also produce these ‘hot’ spots. Perhaps I have an unresolved pneumonia which is showing partial resistance to the levaquin. I did feel much better when I was taking the antibiotics.

It may be that my cancer itself has ‘heated up’ or become more metabolic and therefore more aggressive, potentially transitioning away from pure BAC to a histology more in line with adenocarcinoma. Or, despite the early promise, LDK378 may be working, but potentially not as well as we’d hoped.

A passage from the archives of GRACE (an excellent online resource):

“Dr. West: In the metastatic setting for lung cancer specifically, clinical trials include CT scans to assess response or progression.  Do you believe that the PET scan adds significantly to that or can we do as well with CT scans basically showing shrinkage or enlargement of known disease? 

Dr. Djang: Definitely the PET scan has been proven to be more accurate in the setting of metastatic disease.  I think what it comes down to is that if the treatment is working, if the chemotherapy, chemoradiation therapy is working, the first change that you’re going to see is a decrease in the metabolic activity of the tumor cells.  That can only be measured with a PET scan and that change will come first.  The CT can only measure response to therapy by looking at tumor size.  That takes time.  It takes time, at least some time for a tumor to grow or to shrink if the therapy is successful.  If you have a car that has stopped running, the engine will become cool long before the body of the car starts to degrade.  So in the same concept, the metastatic deposit will cool off on the PET scan before it shrinks.  

Dr. West: So a PET scan may be especially valuable in getting some early feedback about whether your treatment is likely to be helpful or not? 

Dr. Djang: Early and more accurate, yes.” 

It has not been an easy time to stay hopeful. I have several friends who are struggling with their disease and I don’t know what the hell is going on with mine. Some weeks ago a post I had written for my online support group  regarding battle fatigue was republished on e-patients.net. I concluded it on a strong note.

I started on levaquin again yesterday; just so that I can feel better. Tomorrow, after my labs, I’m heading to NYC for a few days with my dear W & C. Next Monday I am scheduled for a bronchoscopy. Not only will the surgeon ‘harvest’ some fluid for a culture, an enlarged lymph node might be biopsied. And then on Thursday I will have  a chest CT scan, which is an anatomic versus metabolic view of my disease.

My desire to think positive is sometimes subjugated to my need to think possible; as in all possible outcomes. To prepare myself for whatever comes. But if you spend too much trying to see what lies ahead, you may miss the very moment.

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Posted in ALK mutations, Coping, Scans, Treatment

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The good, the bad, the cold and the ugly

Posted on January 26, 2011 | 16 comments

This is the frost on the inside of a window in my ‘studio’ Monday morning. It was a serious seventeen degrees below zero when we woke up. Very cold. The sort of cold that is beyond reasonable. Later that morning I drove to the grocery store and saw a bird I didn’t recognize sitting by the side of the road. It didn’t budge as I passed, and curious as well as concerned that it might be injured, I turned my car around to go investigate. The imperturbable bird turned out to be a blue jay, shivering in a patch of sunshine with its feathers so puffed up it resembled a baby penguin.

Our friends Brian and Jen were visiting from Baltimore, and they braved the frigid cold to go skiing. As they departed, my inner mother handed them each a face mask with strict instructions to wear it.

Jen and Brian snowshoeing on Sunday

Our guests returned from the ski area earlier than expected. Shortly after lunch Jen had wiped out and hurt her knee badly enough to score a ride down the slope in the ski patrol sled. I shooed them to the couch and had Pete build a fire while I got to work on dinner. The night before, Brian and Jen had cooked a spectacular meal, and David did the honors the evening they arrived. My turn.

By the time I said goodbye to them prior to bed on Monday evening, my cheeks hurt from all the laughter (and my head from all the wine). Two days and three nights of most excellent revelry.

Tuesday morning I was awake by 4 a.m. and left the house by 5:45 for a trip to Boston and the hospital for several appointments. It was zero degrees outside and snowing lightly, and driving proved a bit challenging. By the time I’d gone perhaps fifteen miles, I saw three different accidents and a variety of emergency vehicles. One car lay on its side in the deep snow by the side of the road, the headlights shining into the woods.

It was a no good very bad day to drive, and it took me a (personal) record 4 hours and 15 minutes to get to MGH. By that time I was an hour and a half late for my early morning appointment with the ENT. I was hopeful they could fit me in anyway, and sat there (futilely) until it was time for my blood draws in Yawkey.

Dr. Shaw was running late as well, and as lunch time approached, I took one of everything a pink-shirted volunteer was offering on her cart: tiny luke warm cans of V-8 and apple juice, and packages of crackers, bonny doons, and peanuts. Yum.

Eventually I was ushered into the back and Alice (Dr. Shaw) joined me a few minutes later. I’d been expecting a lousy scan report as I was still quite congested when I’d had my CT scan the week before (three weeks recovery time for the flu). However, it was again more or less stable; one lesion a millimeter larger, another two millimeters smaller. I broached the subject of less frequent scans, and to my surprise, it was now an option for those who lived great distances. After the drive that morning, I felt that I qualified, and unless there are symptomatic indications to the contrary, I will have my next scan in four months. Yippee!

The next stop was infusion, where to my great delight, they had booked me a bed and an acupuncture session with Irene. After dosing and picking up my crizotinib, I called the ENT office and the receptionist said to come on over.

This is where my day started to feel ugly. I was exhausted from the long drive and early departure, and it was already after two. What the receptionist neglected to tell me is that they would fit me in after all the other patients had been seen. I sat in the waiting room for three hours before I saw the doctor. I wish I could say that I whipped out my lap top and made good use of all the down time. But no. First of all, due to the lack of communication, I kept thinking that I’d be next. Secondly, I’d become rather undone.

I am really quite flexible and generally able to find some source of comfort in any given situation. I am, however, very impatient. In real life, whatever I am doing, I do quickly. I don’t like to go slow(ly). It is the character trait with which I struggle the most. However, I can generally find a way around my impatience; some sort of diversion. Even that morning, stuck in traffic, I had entertained myself by glancing out my windows and identifying things I would have liked to photograph.

But sitting in that office, with no timeframe, I simply felt trapped and lacking in control. And when feeling that way, I tend to just shut down.

Silly, really. And something I hope to overcome. But not yesterday. Good news and all, it was one  bloody long day and I didn’t get back home until more than fourteen hours after I’d left.

But today, I’m all better again. Of course.

16 Comments

Posted in Scans, Treatment

And now, I play catch up

Posted on December 8, 2010 | 10 comments

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.

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