Monthly Archives: October 2011

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:

8 Comments

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

Tagged , ,

YES! The results of the latest scan are in

Posted on October 22, 2011 | 40 comments

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.

40 Comments

Posted in ALK mutations, clinical trial, genetic testing, LDK378, targeted therapies

Tagged , ,

(Almost) 48 hours in NYC

Posted on October 21, 2011 | 3 comments

Calling all enthusiasts: I found the perfect mug in NYC

After my labs on Tuesday, I boarded the Acela out of Boston for Penn Station in New York City. My good friends (and Pete’s godmothers) Wendy and Cristina were renting an apartment for two weeks and I was invited to join them for three nights.

On our first evening, we went out for thin crust pizza and then to the Campbell Apartment for a round of drinks (make that a $14 martini!). It is tucked into a corner of the refurbished Grand Central Station; which now bears little resemblance to my drab memories of it from the early eighties.

Day two started with bagels and coffee in, before a stroll and an impromptu stop at Sara Japanese Pottery, an exceptional gallery not far from the rental. Cristina and I shared thoughts of befriending the charming director and she purchased the two of us matching iron bottle openers.

We then made our way to the Frick museum where an exhibition of  Picasso’s drawings was on display. Perusing his renderings was a splendid opportunity, but I was even more taken with Goivanni Bellini’s St. Francis in the Desert. As I always do after a good dose of art, I came away from the museum with renewed enthusiasm ( see photo) for my own creative pursuits.

By this time we were famished, and stopped for lunch at a deli. There was a  fellow standing in line behind me, and after I ordered he said to me “What sandwich did you get?”. I responded that I was having a salad and a cheese popover. And then he asked, “Are you Canadian?”.  Made sense to me.

By late afternoon it became apparent that Cristina was not feeling very well; in fact, she suspected a case of bronchitis was coming on. This led to a discussion as to my own susceptibility and whether as a precautionary measure, I should cut my visit short. Cristina phoned her doctor in California, and Wendy and I went for a quick snack and then to a concert at The Morgan Library & Museum.

To my great delight, it was a presentation of Jordi Savall on the lira da gamba and bass viol with his son Ferran Savall, voice and theorbo. I’ve been a huge fan of the viole da gamba and Jordi  Savall since the early nineties, when I first viewed the Gerard Depardieu movie Tous les matins du monde. The duo performed a piece from the soundtrack, and I had tears streaming down my face from start to finish (because I was so happy!).

The next morning, after a delicious breakfast, W & C hailed a cab and sent me packing. Happily, Cristina was able to fill a prescription for antibiotics and soon felt better, and my immune system fulfilled its job description beautifully.

It was a brief but lovely visit.

3 Comments

Posted in Uncategorized

New York bookmark

Posted on October 14, 2011 | 4 comments

4 Comments

Posted in Uncategorized

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.

22 Comments

Posted in ALK mutations, Coping, Scans, Treatment

Tagged , , ,