Category Archives: Scans

Getting ready for the turkey

The house is beginning to fill with good smells, as David prepares a madeira ham (to go with the turkey–a Duff family tradition). By this evening, we’ll also be joined by the Colorado contingent of the family.

My post today is going to be a bit of a mash-up of links. One of the things on my mind as of late has been the FDA proposed warnings for cigarette packages. I find the whole thing a bit ridiculous. It is not that I feel there shouldn’t be a warning on tobacco products; it is just that I don’t understand why cigarettes are still legal. I mean, we all know they are unhealthy for everyone except for the shareholders of Phillip Morris et al, so why, why, why? Isn’t a warning just as effective as spitting on a fire?

Well, of course it is complicated. And a big part of the problem is all of the tax revenues generated by smoking. Guess where that money is going? To the same government that is proposing the warnings on the packages. It’s all more than a bit disingenuous.

November is lung cancer awareness month, something few people are aware of. Following October, dressed in pink for Breast Cancer Awareness, ‘our’ month feels a bit like the ugly stepsister. And yet, there are those who are still working tirelessly to get the word out. I wasn’t able to attend this year, but representatives of Lung Cancer Alliance hosted more than 65 Shine A Light on Lung Cancer vigils in 29 states on November 4th. In addition, LCA has released its annual report card on Lung Cancer. And my sister Laura is gearing up for another Team Lung Love marathon in Austin.

Another bit of good news; in a new report from the National Lung Screening Trial, CT scans have finally been recognized as a lifesaving screening tool for those at high risk for lung cancer. The caveat, of course, is that those of us who never smoked are not in the group recommended for screening. Hence, we must remain vigilant as our own health care advocates (something many of us learned too late).

With everything going on in each of our lives, it is easy to become complacent. However, complacency equals complicity. For a tip on something simple each of us can do, check out this article in The Huffington Post.

And, have a very Happy Thanksgiving.

About that scan visit…

The good news is that there were “no significant change(s) in multiple solid and ground glass nodules in opacities consistent with multifocal lung cancer.”

Also noted: “Interval development of a new 6-mm nodule in the right upper lobe with ground glass halo which may represent atypical infection (such as of fungal etiology) or new focus of neoplasm (primary versus metastatic).”

When I had the scan done on Friday I was in the thick of a sinus infection. So I am very hopeful that the 6-mm nodule is a result of infection and inflammation. If not, it would seem to have popped up from nothing, which is of course unsettling.

Since our last visit, Dr. Shaw had reviewed all of the scans from the past twelve months, and at this appointment she placed them side by side for me. Although she feels that my cancer is behaving in a fairly indolent fashion, it is nonetheless persistent. The difference between my most recent scan and that from a year ago is striking. So we talked about the benefits of getting a biopsy now, while I’m still feeling good, rather than later when shortness of breath will likely become more of an issue.

The purpose of this biopsy is not to confirm malignancy, as there is really no doubt that we are looking at metastasis. Rather, it is to gather genetic material in an attempt to ascertain why my ALK mutation has become resistant to the crizotinib. In addition, it may be possible to determine which line of treatment might be indicated as next in line.

We discussed the pros and cons of a needle biopsy (much less invasive but also able to harvest significantly less viable cells) and a wedge resection (major surgery, but a greater return on genetic material). It was decided that the needle biopsy would be my first choice. However, after discussing my scans with the radiologist who would perform the biopsy, Alice (Dr. Shaw) called me to say that there were two significant concerns:  firstly, that because of the peripheral location of my cancer, it would be very difficult to successfully position the biopsy needle in order to zero in on the cancerous nodules, and, secondly, that due to the diffuse nature of BAC, the possibility of a post biopsy hemorrhage in my lung might be as high as 20%.

She felt that the combined possibility of negative side effects with an uncertain return made this scenario less than optimal. So, next Friday I will have a consult with the thoracic surgeon to discuss a wedge resection.

Although I was all too aware that another biopsy lay in store, I was hoping to avoid surgery. A hospital stay, general anesthesia, recovery. I’m whining a bit, I know, and it’s not attractive. For some time now it’s been pretty easy for me to visualize that I have cancer ‘lite’ and as a result I’ve indulged in several fantasy scenarios for the future. Lots of art, travel, skiing…cancer is messing with my plans again.

Whining aside, I’ve had it pretty good (poor grammar, I know, but concise and to the point). This is just another bump in the road. And besides, I just got back from Sweden! So, I promise, in the next post that is all I will talk about. Happy Friday.

Stability

The word I least want to see on a radiology report is progression. Resolution, in any form, is a highly coveted term, but next best is stability.

Yesterday we went over my latest scan with Dr. Shaw. In marked contrast to the previous radiology report, this one was short and sweet.

It reads:  “Multiple solid and ground glass nodules are stable compared to most recent prior study of 4/12/10 but have increased in size compared to 10/20/09 concerning for slowly worsening multifocal adenocarcinoma/braonchioloalveolar carcinoma.”

Slowly, I really like the sound of that as well.

Alice (Dr. Shaw) was also quite pleased with the report. The fact that there are no new lesions and no growth in previously identified nodules, suggests that my cancer is yet responding in part to the 1066. It also means that it is appropriate for me to stay on 1066 at least until my next scan in mid August. This buys me more time (always of the essence) and also gives those pharmaceutical companies an opportunity to further tweak whatever is next in my anti-cancer arsenal.

I am very, very pleased.

David and I also had the opportunity to meet two other couples at the hospital yesterday who are engaged in similar battles.  Leslie and Steve and Sue and Matt, although I wish we’d had a chance to be introduced under different circumstances, it was a pleasure and I hope we’ll see each other again, and again (for years and years!).

As I sat in the waiting room yesterday, I was really struck by how many young people were there. Five years ago, when I first started hanging out here, most of the patients were significantly older than myself. Sadly, that seems to be changing. But then, much has changed, and whereas progression in an individual cancer is a dirty word, progress in the lab is a very good thing indeed. My oncologist, Dr. Alice Shaw, is one of several researchers at the forefront of recent discoveries in lung cancer; discoveries which promise some hope in this hard-to-treat disease.

More good news to report, close to the home front. On Sunday the boys (David, Peter, Buddy) and I went for a hike in the woods. I was mostly looking for the reddish orange newts which appear underfoot at this time of year.

We saw plenty of those, but also spotted not one, but two, black bear in the woods. The first one was an adolescent and disappeared deeper into the forest so quickly that I only heard but didn’t see him. The second bear was very large, and we watched him for several minutes as he lumbered through the trees and then a clearing. He was spectacular. And no, I’m not a good action photographer, so I didn’t capture him on film. However, almost as good, I photographed some lovely (and slow moving) purple fungus. Enjoy.

Glass slippers: finding one that fits

Spoiler alert:  For those of you who are currently enrolled in the PF-02341066 trial and/or considering enrolling, please do not be discouraged by today’s post.  The trial has been nothing short of miraculous for me and many others.  I have always known that it was, however, not a cure for me, but rather a much needed ‘vacation’ from my cancer.


Monday was the day of my appointments in Boston.  As I got dressed that morning, I contemplated fixing my little V pin to my shirt, in celebration of five years, but somehow it just didn’t feel right.

It’s generally a solo trip, but David came with me this time.  Due to the fact that it was Patriot’s Day, traffic was a breeze, and we got to the hospital with plenty of time to spare for a cup of coffee.  Dr. Shaw was prompt, and as she entered the exam room, I could sense that it wasn’t going to be good news.  Had it been a book that I was reading, I would have marked the page, shut it, and walked away. Maybe later.

Not a book though, but life as I’ve come to know it (quick fact:  as someone who is fifty and was diagnosed with cancer five years ago, I have now spent 10% of my life battling lung cancer).

So, cut to the chase, it is now apparent that my cancer is developing resistance to the PF-02341066.

There is no longer a single area of concern in my upper left lobe, but several, including one in my right lung.  In addition, the pleural effusion which had been stable for five years has gotten slightly larger.  I’ve scanned in a copy of the report:  for those who are curious, if you click on the image you can see it full size. Radiologist’s speak, and it’s a wordy one.  Quite the opposite of the ideal report, which would be short and sweet and use words like ‘unremarkable’.

As I left Alice’s (Dr. Shaw’s) office, I felt like Cinderella at the ball when the clock struck midnight.  I had been living in this fantasy which included a future and I was really getting used to it.  It hit me really, really hard.

However, after approximately 36 hours of feeling sorry for myself, I rallied.  This was due in no small part to the fact that Alice called not once, but twice with updates on potential avenues for treatment.  Once again we are at the very edge of what is available.  I was describing it to Peter as being similar to trying to cross a fast moving stream on a path of stones, and he more aptly envisioned the stones as the backs of turtles: they too are likely in motion.

So, I will stay on 1066 as long as I am able. Hopefully that will be for at least several more cycles. I would then potentially enroll in a trial for a HSP-90 inhibitor (HSP-90 is crucial to several proteins which stimulate growth in cancer cells). Alternately, I might return to a more traditional chemo such as Alimta. Some of the other options we had once talked about, including a wedge resection or radio ablation, are no longer viable, as my BAC appears to be multi-focal once again.

Perhaps most exciting, is a new ALK inhibitor by Ariad that was announced at the AACR meetings.  It is specifically tailored for ALK mutations that have become resistant to PF-1066, and it is reported to be even more potent.   However, it is preclinical:  not even in phase I yet.  One of those swimming turtles.

So, I’m shopping for just the right glass slippers again (or, back in line for another miracle).  And in the meantime, I’ve got to stay positive, be strong, get as much benefit out of each treatment as possible, and just hope that medical science is one step ahead of me.

Wish us all well.

My latest scan/radiology report and my response

This morning I put on the t-shirt that Jemesii had made last year for Mother’s Day.  Call it dressing for success.

On Monday I left the house at 6:45 a.m. for Boston.  In places the highway is bordered by steep rock walls, which in the warmer months shimmer with trickling ground water.  Once winter sets in, the seepage forms thick columns of ice which have the appearance of frozen waterfalls.  Some of these columns are a dirty yellow, others an unearthly turquoise, although most are a glistening white.  The early morning sun was was hitting them at such an angle that they absolutely sparkled.  Sadly, there was also a dead coyote in the median.  Last winter, on a morning where I had to leave the house at 4:30 a.m., another coyote crossed the road at a run in front of my car.  It was dark and I never saw him until he entered the beam of my headlights.  Instinctively, I swerved and braked, but was unable to avoid him.  It was a glancing blow, and he kept moving.  Later I found a small tuft of golden fur wedged in my front bumper.  I was heartsick, but hoped that perhaps he had suffered only bruises.

Traffic was stop and go once I got closer to Boston, and I arrived at the hospital just prior to my 9:30 labs.  An hour later, I had my appointment with Dr. Shaw and we reviewed my latest scans.  I have learned that there is often a significant difference between the way a radiologist’s report reads and my oncologist’s interpretation of the report.  In this case, the hard copy states:  “Increased size of ground glass nodule on image 42, concerning for an enlarging metastasis. Multiple other stable ground glass nodules”.

Alice (Dr. Shaw) pulled up my last two scans for comparison, and explained that the morphology of the nodule they are referring to, although characterized as having previously measured 7 mm and now 11 mm, is actually unchanged as far as scale.  What it has done is consolidate somewhat.  This could indeed mean that my cancer is on the move, but there is still a chance that it is inflammation that we are looking at.  The area where the nodule appears in my lungs is where I once had a great deal of disease, a fact which I suppose could support either scenario. It is a positive sign that the other findings are stable, and that there are no new nodules noted.

So, of course, we talked about the what if.  There are a number of treatment possibilities this time, as a solitary nodule is more manageable than the diffuse disease I had previously.  In the meantime, both Alice and I remain quite optimistic, and I am continuing to hone my life force to a sharp point (hence, today’s outfit).

After my appointment with Dr. Shaw and my trial team, I went out for lunch with my dear friend Melinda.  I had another appointment in the afternoon with my thoracic social worker, Mary Susan.  Melinda ran some errands and we met up again for coffee before we each hit the road.  Rather than heading home to New Hampshire, I drove to Newburyport  for a sleepover with my friend Sadie.  That evening we had tapas and red wine for dinner and caught up on many months of news.  Yesterday we tooled around the shops and went to lunch at Grezzo, a restaurant that prepares vegan and raw food.  I wasn’t sure what to expect, but I ended up being absolutely delighted, as it was one of the tastier meals I have ever had.  Click here for a link to the Grezzo website which also has some information about the raw food concept.

Today I need to pack, as we are planning to leave tomorrow for California.  Of course, the weather may not cooperate, as we’ve supposedly got a big winter nor’easter heading right for us.  The plan is to travel to the Bay area, where we will hang out with good friends Wendy and Cristina, before heading north to Mendocino.  We’ll end our California sojurn with a quick stop in San Francisco and a visit with my friend Kate and her husband Dave.  The boys will head home before me, and my next stop will be Utah, where I will be joined by my sister Bink and brother John and we will spend a few days with our mom and stepfather Jim. Then, on to Colorado where I will kick back with our son August, Bink and John’s families, sister Ro and her husband Brian, as well as numerous friends and cousins.

It should be so much fun, and I intend to post from the road as well.  And when I return home, I will jump right back into painting, which has become quite an obsession.  I am working on a whole slew of them, and several are near completion.  Here is a peek at some of the works in progress:



Fresh snow and a new scan

I left the house yesterday at 5:30 in the morning, as I was to check in at the hospital at 8 a.m. for my scans (chest and abdomen).  There was a winter weather advisory, and I really hadn’t known what to expect on the roads. As it turned out, there was very little traffic, and only a light sleet was falling.  The drive was just a little over two hours, which is about as good as it gets.  However, I waited two and a half hours for my scans,  as one of the CT machines was down.

There are two waiting rooms, and before you are ushered into the inner room, you change into a johnny.  Shortly thereafter, an IV will be inserted for the contrast agent used during scanning. And then you wait some more.  It is in this second waiting room that conversation among strangers is likely to begin.  It is a small space, the chairs are arranged around the periphery, and we are all facing each other.  It is cold, and we shiver in our flimsy hospital gowns.  There is a general state of anxiety, but also acceptance, as most of us are veterans. Once, feeling curious about the particulars of a woman sitting across from me, I asked her “do you come here often?”  We both laughed at the question’s resemblance to a pick-up line in a bar, but also at its stark appropriateness in this situation (she was indeed a regular).

Yesterday’s conversation veered from the technical, as I struggled to operate my new touch screen phone, to the practical, as we offered where we’d driven in from that morning.  One young woman had come from Switzerland (it is not uncommon at MGH to encounter international patients), so she won the longest commute award.

At last my scans were done, my IV removed, and my little plastic ID bracelet cut off.  I quickly dressed and hurried to Whole Foods, where I was meeting my friend Ginger for tea.  After lunch and a lovely chat, I began the drive home.  It was sleeting heavily by then, and driving was not so much fun.  As I drove further north, the wintry mix became just snow.  It was just before 4 p.m. as I pulled into the driveway.  There is a pile of splintered wood where David has been splitting logs, and the fresh snow looked so lovely lying there, that I ran in to get my camera before I did anything else.  This is the resulting image.

Four millimeters of anxiety

On Monday morning I drove to Boston for my monthly meeting with the trial team.  The roads were largely empty, as many people are yet on holiday.  When I arrived at the tolls, there were actually more vehicles in the northbound lanes, likely filled with skiers, boarders and snowmobilers.  This meant I had a commute minus the usual stop and go, which is undeniably a more pleasant trip.

After my labs, I met with Dr. Shaw to go over my latest scans.  Although some people are under the impression that I am now disease free (a notion that the media has perhaps inadvertently encouraged), medically my situation has never been characterized that way.  My response to the trial drug was indeed dramatic, but it was a partial response. This is due to the fact that there are still areas of abnormality in both lungs.  The radiologist’s report describes these regions in the following language:

“The patient is status post left lower lobectomy.  There are stable postoperative changes.  Again noted are persistent and unchanged focal areas of interlobular septal thickening with micro-nodularity/irregularity.  There is biapical scarring. There are multiple pulmonary nodules which measure up to 7 mm which are stable relative to the study of 2/24/08.”

Before I went on trial, my lungs were carrying a heavy cancer burden.  Much of what is seen on the scans now may represent inflammation or scarring, not an unreasonable scenario given the amount of disease that was present previously. What the radiologist is really looking for is stability or the lack thereof.  Whether the presenting nodules are benign or cancerous, stable is the next best thing to resolved.

This report noted one nodule that appears to have increased in size:

“In the left lung…there is a 4-mm nodule which first appeared on the study 3/13/09 where it measured 2 mm.  It has gradually increased in size over the multiple consecutive studies.”

Well.  What does this mean?  Undeniably, it could be suggestive of recurrence. However, there are other possibilities as well.  It is a tiny, 4 millimeter red flag. There is nothing to do at this point but watch and wait.  I don’t deny that it makes me anxious, but I have to remind myself that whatever this nodule represents, it is very small and apparently not very fast growing.

Following my appointment, I met up with my good friend Sally, who was visiting family in Brookline.  I joined Sally and her relatives for a preemptive celebration of the New Year. Our champagne toast to the good health of all gathered was particularly poignant, as one of Sally’s sister-in-laws is in treatment for Burkitt’s lymphoma.

After dinner Sally and I retired to the Marriott for a sleep-over, as I had an appointment scheduled for yesterday morning with the orthopedic department. My ankle is healing very well, and I even got a tentative thumbs up for a few runs on the ski slope.  As long as it is a gentle slope, there are no children or other people around, and I don’t fall…I’m good.  I might give it a shot.

I drove back to New Hampshire in a fierce wind and single digit temperatures.  It had snowed overnight, and I’d missed out on a serenade by a pack of coyotes in our backyard.  In addition, David found moose tracks in the woods.  It is always comforting to come home to this rather wild and wooly place where nature is simply going about its business.  My own worries seem inconsequential compared to the daily struggle for warmth and food that is part of being a wild animal.  We, each of us, are striving to get through another day; another night.  I have heard that one of the purposes of the cacophony of birdsong at first light is a roll call of sorts.  Each bird is singing to its neighbors:  “I am here, I am here”. And so we are.

Driving into Boston…

Today I drove the 110 miles (each way) between our home and Boston to go to MGH (Massachusetts General Hospital) for a CT scan. Driving myself to these appointments is just one of the ways in which I have become more independent than I was previously. When I expressed interest in participating in the clinical trial, I was warned that it would mean both a considerable time and travel commitment on my part. These seemed small considerations given what was at stake.
The trial drug is administered orally in tablet form and I am able to take my twice daily dose at home. However, I am required to be at the hospital two days a month for blood tests and physicals. This is both for the purpose of collecting data and to monitor my health. I am also given a spiral CT scan of my chest and abdomen every two months for the same reasons.
I have received so many CT scans over the last 4 years. I just can’t dwell on things such as the secondary exposure to radiation that is part of my treatment. More of that between a rock and a hard place. Instead I focus on the fact that I am so very fortunate to have such state-of-the-art care available to me. The spiral CT scan makes early visual detection of any minute changes in the areas that are monitored possible. This provides important information as to the efficacy of the drug to my doctors and the trial researchers.
Before I was enrolled in the trial I would become very anxious a week or so prior to each scan (scanxiety). This was with good reason–as I never had a completely clean scan. These “dirty” scans meant that I could never say that I had no evidence of disease, or, “just call me NED”. This was obviously very difficult on the one hand–no respite from my disease. On the other hand, perhaps I was not as surprised and thereby more prepared emotionally for recurrence. I don’t wish to imply that it was anything but devastating to make that transition to “terminal” and I will certainly devote more time to that in another blog.
But back to the subject at hand–my bimonthly CT scans.
I really don’t get very anxious anymore. This is in part because I feel so good and am therefore more confident of a positive outcome. To be honest, when your scans are two months apart, there is very little time between them in which to get nervous.

On the day of the scan, you are required to fast for two hours prior and to check into radiology one hour before the scan.  Then they hand you two 450 mL barium sulfate “shakes” that you need to drink within the next hour.  I have begun to dread this.  I don’t know if it’s my brain or my stomach, but it just gets harder and harder to swallow (literally).  Today I felt pretty darn nauseous, and I think I will speak to my oncologist about whether or not I could take an anti-nausea medication on the day of the scan.  The last thing I want to have happen is to vomit and have to repeat the whole sequence of events.

At the time of your appointment (well, things don’t always run on schedule) you change into a johnny (why do they call them that?) and take your place in a waiting room that is always several degrees colder than comfort would dictate. Blankets from the warmer are available on request.  Sometimes the patients chat amongst themselves about various diagnoses–other times you wait in chilly silence.  When your name is called you are led to a room where an IV is put in. The nurse in this department refers to those of us who are frequent fliers as the “poker” club.  One side effect of frequent visits can be “tired” or fussy veins. Today a young man is training.  The nurse instructs him to use a pediatric needle for me, as my veins are not only tired but roly.  We are all relieved when he gets the IV into the first vein he tries.  Then it’s back to the waiting room to wait for the actual scan.

The scans themselves are no big deal.  Actually–I take that back.  You are required to hold your breath, and although that is no problem now, when I had extensive cancer in my lungs it was not easy.  For the last part of the exam, they inject a radioactive contrast agent into your IV.  After a few seconds you get a really warm feeling in your mouth and your groin.  And then, after perhaps 10 minutes on the exam table–you’re done.

Waiting for results is never easy.  Sometimes it’s several days or more:  this time I only have to wait two days, as I have an appointment with the trial team on Wednesday.  At that time I will find out whether the cancer is still being held at bay.