Monthly Archives: February 2012

Just desserts

Posted on February 28, 2012 | 17 comments

One more week off drug. My enzymes continue their descent, with the AST/SGOT now in the realm of normal with a value of 41 and the ALT/SGPT at 100. It’s the ALT that needs to come down more, but the team is confident that I’ll be there by next Monday. The plan is to rechallenge with LDK 378 at a lower dose of 400 mg (the original dose at which I entered the trial).

Just as Dr. Shaw predicted, the radiology report from my scan reads:  “No significant change in patchy groundglass opacities and mixed attenuation lesion in the left lung, likely corresponding to lung cancer. Stable two 5mm nodules in the right lung. Interlobular septal thickening in the posterior left upper lobe unchanged, likely represent(ing) lymphangitic carcinomatosis. Stable small pleural effusion.”

Lots of stables and a sprinkling of likely as well–likely connoting a pleasing if unlikely lack of certainty. I’ll just run with it…

I am just about done with the course of antibiotics and I feel the infection has cleared up. However, I am experiencing some new shortness of breath and  Alice (Dr. Shaw) confirmed a wheeze in my left lung. Trouble maker, that one (the lung, not Alice). I’d like to believe I’ve just fallen out of shape as I’ve not been walking the past two weeks. I did ask about the possibility of a flare in my cancer while I’m off drug; a phenomenon that has been document in the wash out period for patients coming off tyrosine kinase inhibitors (targeted therapy for EGFR positive cancers). The answer was yes, it is possible but, she felt, unlikely. I can’t help myself. Some people are more comfortable with less information, some of us want to hear it all; the good, the bad and the ugly.

But, there is one very bright if momentary spot of sunshine. Grapefruit. I adore this particular citrus, and I hadn’t had one for four years. Grapefruit can interact in a potentially dangerous fashion with several cancer therapies and therefore is verboten. A week ago we received a bushel of oranges and grapefruit from David’s employer. This time, I didn’t have to look on with envy but could partake. Woohoo!

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Calculating risk

Posted on February 26, 2012 | 10 comments

Thursday I traversed the frozen surface of the pond for perhaps the last time this season. The ice is thinning quickly. I had on my rubber boots and stayed what I felt to be a safe distance from shore: should I break through, the water would not be over my head. I got some fantastic photos and considered the little adventure a success. However, over dinner that evening when I mentioned that I’d been on the pond earlier, David and Peter were furious. Peter wouldn’t calm down until I promised I wouldn’t go out again.

I have always considered fear the enemy; something to conquer and overcome and I’ve had a lot of practice. Being risk adverse and scrappy has been an asset now that I have lung cancer.  As a participant in a phase I clinical trial, there is the potential for unforeseen and possibly life threatening side effects of treatment itself. Before you are given your first dose of an experimental drug, you must read through and sign consent forms which acknowledge this risk. It is something most healthy persons would never do. When you have a terminal illness, it is similar to coming to the edge of a ravine with a tiger on your trail. Between you and safety is a rickety bridge that may or may not support your weight. However, even chancy passage is an easy decision when the alternative is certain death.

Last week, the first night in the hospital, I pumped Dr. Shaw for information regarding the worst case scenario. She hesitated, but I assured her that knowing helped me feel more in control. When David had to leave for home, I told him goodbye and that I loved him and that if anything happened, I was so sorry (I figured that covered pretty much everything).

That night, when I finally fell asleep, I  dreamt I was kneeling in a field next to a man who seemed to sparkle with light, as if he were made of fireflies. And then I recognized the sparkling figure; it was my Grandpa Roy. It’s been almost thirty five years since my grandfather passed, and I was shaken the following morning. It was almost as if I’d paid a visit to the narrow place between life and death.

It was merely a dream. My enzyme values continue to fall. Slowly. It is a time for patience, and that is a virtue I cannot claim.

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Posted in Coping, Death and dying

A bit too close to the edge

Posted on February 23, 2012 | 17 comments

I get my feet wet

I was discharged Sunday. Six pounds lighter and pretty darn worn out after my adventure, but happy to be home. I am back on the antibiotic levaquin, my persistent cough is finally abating and David has made the feeding and fattening of Linnea his pet project.

On Tuesday I returned to Boston for labs, a CT scan and to meet with Dr. Shaw. My ALT/AST are continuing to come down, but are still elevated. The LDK 378 will be held for another week and I will have labs on Friday and again on Monday to make sure the downward trend continues. Although I don’t have the radiologist’s report yet, Dr. Shaw reviewed the scans and feels that the activity in my lungs is at the very least stable, and at the very best, maybe even slightly improved.

All of the tests for outside causes have been coming back negative, as anticipated. When I said I was being test for Hepatitis, I should have specified viral Hepatitis. I have learned that hepatitis is a generic term for liver injury and inflammation. Drug induced hepatotoxicity (pronounced (hep′ă-tō-tok-sis′i-tē), and referring to the capacity of a drug or other agent to induce liver injury) is also referred to by the acronym DILI or drug induced liver injury. It is relatively uncommon, “DILI in the case of any single drug is thought to occur approximately in one per 10 000–100 000 treated patients.”  (from Pub Med Central). However, I wonder if that statistic is pertinent to clinical trials. Phase I of a trial, such as the one I am enrolled in, is to determine at what level a drug can safely be administered, and to do so through dose escalation. Although my ALT/AST were significantly elevated, the fact that my liver function was never compromised is an important distinction, not just for me but for the the trial itself. Severe DILI is defined as liver failure or death, two bullets I obviously dodged. However, it would seem that the careful monitoring I received was not misplaced, as evidenced by this article in Medscape about drug induced hepatitis.

Although I would like to go back on trial as soon as possible, I have some trepidation as well. There is the possibility that when the LDK 378 is reintroduced, the scenario may be repeated. Of course, the only way to find out is to try, and I assume I would be monitored even more closely at rechallenge (the opposite of dechallenge, or holding of the drug).  The FDA has published a Guideline For Industry that specifically addresses the issues surrounding DILI in a clinical trial setting, should you be interested in the specifics.

In the big picture, it is not so very important, but I’m sad to say that my drinking days might be over; I can’t even look at a glass of wine anymore. And I had such a talent for (the wine tasting) and sublime appreciation of. Oh well. I actually awakened in a bit of a cold sweat last night because I dreamt I’d had a cocktail.

So, in conclusion, I came out on the good end of a bad week. I am both highly encouraged and deeply anxious about where we go from here. And I will keep you posted.

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Parting Shot

Posted on February 19, 2012 | 2 comments

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Change of Scenery

Posted on February 19, 2012 | 24 comments

Thanks so much to everyone who left comments on the previous post. As you can see from the photo, my little bump in the road got a bit bigger and I am writing this from a hospital bed.

Shortly after I published the previous post, I got a phone call from Dr. Shaw with the results from the local lab. My liver enzymes, rather than going down, had now risen to more than four times their level on Monday. Essentially, my liver was being poisoned. There isn’t an antidote for hepatotoxicity, but Alice (Dr. Shaw) wanted me to come in for monitoring. Significantly elevated liver enzymes (ALT/SGPT and AST/SGOT) are a sign that rapid cell death or injury to the liver has occurred (as the cells die they lyse, or break apart, and release enzymes into the blood stream). However, even a severely injured liver can maintain function. My circulating levels of bilirubin and alkaline phosphatase were both within normal limits, which was reassuring. In the case of actual liver malfunction, they would be elevated as well. However, should the ALT/AST continue to rise, function could be affected as well.

So, off to the hospital I went. Initially I was assigned to a double in an acute care wing. Dr. Shaw checked in and then it was time for some tests. Around 10 pm my liver enzymes were tested once again and they were slightly lower than the one that morning but still quite high. I had a chest x-ray as I was still coughing (and the levaquin was now being held as well) but it came back clear for pneumonia. I was poked and prodded and asked if it hurt until it finally did. I was given an ultrasound of my abdomen, which showed no lesions (thank goodness for that). And, just to rule out anything else that could have instigated the elevation, I was tested for everything under the sun that could affect liver enzymes. Hepatitis, HIV, Epstein-Barr, drugs and alcohol (just in case the patient wasn’t disclosing!).

My roommate was a lovely woman, but anything other than a private room in the hospital is just really hard. Two people, both sick but generally not in the same way, a shared bathroom and a very modest space full of apparatus that is often beeping loudly, a parade of doctors, nurses and visitors as well as the inability to not hear everything that is being said and happening on the other side of the curtain which divided us. It is really not conducive to sleep or healing.

Fortunately, by late Friday, a room had opened in the Lunder building. It is a new wing of Massuchetts General Hospital which is devoted to cancer patients. It is located directly adjacent to the Yawkey center, where I receive my outpatient care. All the rooms are private, spare and modern  and graced with large windows as well as pull out couches for visitors. It’s really nice.

So, that’s where I’ve been hanging out. Aside from a twelve hour period of diarrhea (unrelated to the liver, so more tests) I have felt under the weather, but not too bad. Each day my enzymes have been a bit lower; at first the change was incremental, but the downward pace is increasing. My appetite is coming back as well, and I’m starting to feel restless (a good sign).

It’s now Sunday. Half an hour ago I was handed my discharge papers. My ALT is still in the triple digits, but at this rate, I should be back to normal soon. Once home, I will resume the levaquin (now felt safe to reintroduce) as my chest infection has lingered. On Tuesday I’ll be back in Boston for more labs, a chest CT scan and a quick meeting with Alice. The big question will be, where do we go from here?

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One two punch: medical and emotional update

Posted on February 16, 2012 | 27 comments

First to the heart, and then to the gut. Last Thursday, undone by the passing of yet another friend, I was given the go ahead to get back on prozac. I’d made it four months without chemical support and the decision to return to an antidepressant was not made lightly. I had become such a cry baby and it was beginning to feel untenable. I may be strong, I may be brave (most of the time) but I suck at sad.

By the weekend, it was clear that the tickle in my chest had bigger plans. Come Sunday I was feeling plenty sick with a chest/sinus infection. On Monday I was at MGH for labs, and asked to see a nurse. I knew I’d need an antibiotic, but the LDK 378 is an occasional challenge for my gastrointestinal track and in December I’d taken a single 750 mg tablet of Levaquin to rather disastrous results.  I was concerned about what havoc a full course of antibiotics might wreak.

My sodium was trending low and in anticipation of some GI disturbances we talked about the possibility of an IV boost. She got me a sputum cup for a culture. But then my liver enzymes came back and the levels were significantly higher than they had been a week ago. My lactic dehydrogenase (LDH), an indicator of inflammation, was also elevated.

Game plan changed. The degree of liver enzyme elevation I had (greater than ten times normal) constitutes a grade 3 event in a clinical trial. Dr. Shaw joined us and explained that I would need to go off drug, at least until my enzymes came down.

It’s called a drug holiday, but not as much fun as it sounds.

I am on a lower than my usual dose of Levaquin (500mg) for the chest and sinus infection. There is a chance that the addition of fluoxetine (prozac) mitigated the dramatic fluctuation. The thought was to stay on prozac and see if my levels came down. On Tuesday, really feeling lousy, my appetite nowhere to be found, I decided that I would just stop taking it. If a boat is taking on water, you throw everything that is not essential over the side.

Today I  had lab work done locally. My hope is that the levels are receding; if they should come down enough I could start back on trial in a week. If they haven’t, than it may be that something other than the trial drug or the prozac is causing the elevation. Had I stayed on the prozac, it obviously would have made it easier to rule out the trial drug, but I just wasn’t willing to do that. Next Tuesday I have more labs, a CT scan and a previously unscheduled chat with Dr. Shaw to see where we’re at with all this.

In the meantime, I’m resting a lot, eating what I can (David is a great pusher of food) and crossing my fingers that this is just a bump in the road.

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Heart y’all

Posted on February 14, 2012 | 11 comments

I’m feeling nostalgic for those February fourteenths where my kids were still small. They’d arrive home from school sticky with pink frosting, a paper bag stuffed with valentines from their friends in one hand, a homemade card for their Mom in the other. One of my favorites:

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Posted in Uncategorized

Saying goodbye to my friend Stephanie Spar

Posted on February 11, 2012 | 8 comments

“I would invite everyone to come to tea if I could, but especially you. A fistful of frozen peach slices from last summer truly brightened our day.”

And so were my days made shinier each time I opened a comment from my friend Stephanie.

She entered my life almost two years ago; no introduction, just a casual aside of the sort you would make to a friend of many years. I was instantly intrigued and set about trying to tease more information from her. And yet, her comments remained haiku like in both their beauty and their brevity. At times I felt as if I were being courted. I was smitten.

What I did know about her was that she loved life and yummy food and delicious experiences and could turn a phrase with  the same precision my Grandmother Effie used when paring skin from an apple in one continuous strip. She lived in the NorthWest and had a partner, Michael, whom she adored and was adored by. She had a lust for travel and got as many many miles under her belt as she was able. And, like me, she had  lung cancer.

Late last year, she was given hard news. The cancer had gotten the upper hand. Stephanie and Michael got on a plane for one last trip to Sicily. By the end of January, the inevitable decline had begun and Stephanie entered hospice.

Rather desperate, I sent her an email:

“The two cardinal rules–we can’t stop eating and we can’t lay down and not get up. Remember, please.”

It was selfish and not vaguely practical advice. If she could accept this unfortunate development, I had to as well. The next time I responded with more compassion for the particulars of the situation:

“The news you send is sad but understood…being prepared has always been my MO, even when it means considering all the worst case scenarios.

That you should need to stop treatment was not one of them.”

Yesterday I found out that Stephanie had died on Monday. I was utterly devastated.

It would seem I am not alone: a small volcano of communal grief has erupted online. Stephanie was a member of Lungevity and volunteered as a global moderator at GRACE and her passing will leave a big hole in the heart of both of those organizations. Her partner Michael eulogized her as “the world’s tiniest architect”, on his blog, BlatherWatch (more from Michael, as well as Stephanie’s thoughts, on her own blog, The NO JELLO Journal, which until now was a bit of a secret). Evidently Miss Stephanie was a well respected foodie as well, as her passing was lamented online by that community.

When our mutual friend Guillermo died, Stephanie shared this beautiful poem:

EDGES

When we walk to the edge

of all the light we have

and take the step into the

darkness of the unknown,

we must believe one of

two things will happen – –

There will be something solid

for us to stand on,

or we will be taught

how to fly.

– – Claire Morris

It is a comforting image.

In the end, I will send Stephanie off with her last words to me:

Goodnight sweet one

Right back at you girl.

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Posted in Death and dying

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In the army now (fighting lung cancer)

Posted on February 8, 2012 | 8 comments

Way back in December, just as the holiday madness got under way, I commenced my second assignment as an online peer reviewer for the Department of Defense Congressionally Directed Medical Research Programs. What’s this mouthful, you might ask?

From the CDMRP press release given to those of us who participated:

“As a lung cancer advocate, I recently had the opportunity to serve as a consumer reviewer evaluating research applications submitted to the Lung Cancer Research Program (LCRP) sponsored by the Department of Defense. As a consumer reviewer, I was a full voting member, along with prominent scientists, as part of an online review process to help determine how the $12.8 million appropriated by Congress for Fiscal Year 2011 will be spent on future lung cancer research.

Consumer reviewers represent the collective view of those living with lung cancer, their family members, and persons at risk for the disease as we evaluate the impact of each application.

You can get more information on the Lung Cancer Research Program, including how to serve as a consumer reviewer, on the (CDMRP) Web site.”

The CDMRP is devoted to medical research and the amount of money dedicated to specific conditions is determined annually by the House and Senate Defense Appropriations Subcommittees. From the CDMRP website:

“The Office of Congressionally Directed Medical Research Programs (CDMRP) is funded through the Department of Defense (DoD), via annual Congressional legislation known as the Defense Appropriations Act. For most programs, the DoD sends a multi-year budget request to Congress in the form of the President’s Budget. However, dollars for the CDMRP are not considered part of the DoD’s core mission, and are therefore not included in the DoD’s requested budget. Rather, the dollars to fund CDMRP are added every year during the budget approval cycle by members of the House or Senate, in response to requests by consumer advocates and disease survivors.”

On the CDMRP site, you can find a bar graph illustrating the history of their allocations. Breast cancer research has been heavily funded since the inception, and there is a reason for this. From a CDMRP publication in 2001:

“The origin of the CDMRP can be traced back to1992 when a congressional appropriation of $25M was made for “army breast cancer research.”  At the same time, the breast cancer consumer community, led by the National Breast Cancer Coalition (NBCC), was raising public and legislator awareness of gaps in breast cancer research and lobbied to increase the Nation’s investment in breast cancer research.  In 1992, the NBCC presented President Clinton with a 2.6 million- signature petition for a comprehensive plan to put an end to breast cancer.  This grassroots movement led to a fiscal year 1993 (FY93) congressional appropriation to the DOD for $210M targeted toward breast cancer research.  The USAMRMC1was assigned responsibility for administering these dollars.  Within the USAMRMC, a new research area directorate, the CDMRP, was established to administer the FY93 Breast Cancer Research Program (BCRP), as well as to manage awards that were supported by the FY92 DOD breast cancer research appropriation.”

In the ensuing years, a staggering 6.978 billion has been appropriated for medical research (FY1992-2012). The Lung Cancer Alliance made it their mission to see that some of that money went to lung cancer. Their lobbying efforts paid off, and in 2008 twenty million dollars was earmarked for lung cancer research for the 2009 fiscal year. Since then, an additional thirty eight million has been secured.  Not bad, and a real victory for lung cancer. However, just for comparison, Breast cancer research received 2.66 billion dollars in appropriations between the fiscal years of 1992 and 2011 and an additional 120 million in 2012. It is definitely a case of the squeaky wheel getting the oil. Time to make some noise of our own. And while you’re at it, consider applying to be a peer reviewer. You might find yourself with a nice note in your inbox:

Dear Ms. Duff:

On behalf of the Department of Defense, U.S. Army Medical Research and Materiel Command, Congressionally Directed Medical Research Programs (CDMRP), I would like to express our sincere gratitude for your exemplary efforts as a consumer reviewer for applications submitted for the fiscal year 2011 Lung Cancer Research Program (LCRP). The continued success of this highly visible and competitive program is dependent on maintaining the highest standards of excellence in scientific peer review. We recognize that you have responded generously with your time and valuable perspective to fulfill the demanding requirements of this peer review process. Feedback from reviewers and program staff alike indicates that this peer review process was a success, and it would not have been possible without your hard work and dedication. Because of your efforts, the LCRP draws that much closer to fulfilling its mission.

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Posted in Advocacy

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Button pushing

Posted on February 3, 2012 | 2 comments

Just a funny little tale. My close friends and I decided some time ago to organize a  high school class reunion. Class of 77, so that would be our 35th (ouch). It is coming up in June and I have volunteered to try to locate people. To this end, I rejoined Facebook (a member briefly, I found it distracting for a variety of reasons). I already happened to be a member of LinkedIn, the “world’s largest professional network”, because an acquaintance of mine had invited me to ‘connect’ some time ago. Occasionally, another invite would dribble in and once or twice I exchanged emails with one of my LinkedIn pals. Nothing fancy though.

Wednesday evening, yearbook in front of me, I was attempting to navigate around the LinkedIn site in search of more classmates. I pushed a button that I thought would gain access to some potentially pertinent information. What that button actually did was mine my yahoo data, and suddenly I had sent out 92 invitations to connect on LinkedIn.

I was mortified. I mean, not that there is anything inherently wrong with such a request, but I hadn’t any idea who was being invited and no clue whatsoever how to reverse the unintentional action I had just initiated. By the time I found the way to retract invitations (manually, one at a time) quite a few invitations had been accepted. There was simply no stopping this; the horse was out of the barn.

It seemed a good idea to make my ‘profile’ look a wee bit more professional. I even tried to summon up a suitable photo to upload, but came up empty. In the end, I settled on a reasonable title for ‘what I do’ and identified myself as Self Employed.

So, my sincere thanks to all of you who agreed to ‘connect’ with me. My apologies to those who might have wondered why on earth Linnea Duff was proffering an invitation.  And for anyone who I may have invited and then retracted that invitation, two apologies. It was, in the end, a perfect storm of ineptitude. However, now that I have so many professional connections, I may just cobble together a resume.

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