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:


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.


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 responses to “well

  1. Great post. As always.
    Pissed today – went to a mass for a fellow from group. All the priest had to say about the deceased was that he was a parishioner. I only met the guy a few times and could have honored his memory better. I just kept thinking his wife should ask for her money back. The singer was good though.

    • Hey Stephanie. Thanks. I hate funerals et al for a variety of reasons–impersonal eulogies being one. At least the singer was good.


  2. Linnea, I am sorry that the new clinical trial has not proven more helpful yet. Your words always inspire me; they are filled with honest real feelings that we all need to look at. As much as we would all love nothing more than to have a bed of roses to lie in every night, they do come with those damn thorns… and you express it all so well. The richness of life along with the fatigue of being a warrior. Two of your quotes struck me ~ one from your support group article and one from your blog update ~ “And then I look at the fresh and open face of my 14-year-old son, and I know that quitting is not an option.” “But if you spend too much trying to see what lies ahead, you may miss the very moment.” And so the act of balancing out what this disease dishes along with the beauty of life itself continues. My heart is with you my friend. Sending love

    • Thanks Lorraine.It’s kinda crazy, the way we live sometimes. This week I’m feeling better and correspondingly more hopeful as well.

      Love, Linnea

  3. Thinking of you,You asked about my liver biopsy.Still waiting on this 2nd for results.They said a probable turn around time of 7 days.Hah!It was on the twenty ninth of last month,mailed on 30th.This is the Alk+ test to see if I can take the crizotinib.I didn’t want you to feel I was ignoring you,as I do bless you for being in that trial.Hope your next good news sneaking up on you,AndiB

  4. Linnea – It *is* a dose finding phase, no? If you have had no problem tolerating it, might they raise the dose to provoke greater response? I don’t know how these things work. I want you to know others are standing with you…I just wish you could feel our presence. Thanks for all you do.

    • Ken–you are correct about it being a dose escalation phase. With some protocols, you stay on whatever dose you entered the trial at. This particular trial does hold the possibility of switching to a higher dose, but only after another group of participants tolerates the higher dose for 28 days. So–yes, it could happen, but it will be some weeks or longer. It is a very nice aspect of this trial, and one of the reasons I felt okay about entering it during dose escalation. And I do feel your presence–especially when you leave a comment 🙂


  5. Melissa Parsons

    Hi, I am new to your blog but am very touched by your words. My husband was diagnosed with stage IV NSCLC a little over a year ago, three months after our wedding to be exact. Everyone always says that first year of marriage is the toughest…they weren’t lying! I love and cherish this man so much and I am fighting so hard to find every bit of information I can to save him when your words tonight made me take pause. I do not want to miss the moments right in front of us. We are both struggling so very hard with the balance you speak of. Our oncologist is constantly reminding us to live our lives today and quit thinking about the next scan. Is that possible? It doesn’t help that I am an oncology nurse and see this disease at every phase. Anyway, I just wanted to let you know that your words greatly inspire me. In fact, I’m logging off of this computer and going to hug my husband!

    • Melissa, in turn your words touched me. I always say that one of the lessons I’ve learned along this journey is that life’s not fair (and I’m neither whining nor being cheeky). Accepting that statement does not however make it any easier. Three months after you got married is quite a blow, and the fact that you are an oncology nurse cannot make it easier either. However, I have learned that what I don’t know is more frightening to me than what I do–so perhaps there are in fact some advantages to your background (my own husband had to learn the niceties of nursing on the job). You are probably a powerful advocate for your husband as well, and that is something we all could use.

      Present. It’s one of my favorite words. Not only can it mean a gift, but it also implies being in the moment and aware. And each new day truly is a gift.


  6. Joan Zimmermann

    Hi Linnea- I remember the days of scrutinizing reports while my husband was still responding to treatment, and how each adjective held so much terrible weight. I for one think that this latest PET is a very positive result in light of everything that is occurring in your body, considering the washout period without any drug therapy, and the possible infection. A decrease is still a decrease, going in a “good” negative direction on that silly old axis. And this is a brand-new therapy on the job. Maybe it is just a little stupid and needs to be trained.
    Thinking good thoughts for you, always.

    • Hey Joan, another week and a half as well as seven days of levaguin under my belt, and I’m feeling much better. CT scan today–results Monday. I am hopeful.


  7. HI Linnea…well, your report isn’t the most promising but it’s not as bad as expected….thanks for your sharing; I appreciate your honesty and openness. You are an inspiration to me.
    sincerely, Laurie

    • Hi Laurie. Maybe we’ll run into each other again soon (‘come here often?’, I once asked a woman as we waited for out scans–you never know when a pick-up line will truly be appropriate!)

  8. Wise words from my therapist: “Don’t waste time planning your death, plan your life.” Sometimes easier said than done, but every day I try. On the days that darkness starts to take the upper hand, an effort to focus on nature and beauty (as you clearly do) goes a long way toward regaining the light.

    • Marj–when you are a planner in general, it’s not easy to neglect ALL the details. However, more emphasis should certainly be placed on the good parts. I too, try.


  9. Dear Linnea – your latest entry reminded me of what I found so difficult about this awful disease. That was the emotional rollercoaster of hope, raised expectations, disappointment, lowered expectations, some success etc. then repeat. I hope the levaquin makes you feel better. A big hug from Toronto.

    • Beryl, it is a truly bizarre way to live. What once would have been devastating news, now becomes acceptable. I get tired of playing the ‘it could be worse game’ and with those to whom I’m closest, I am apt to confide ‘and it could be a hell of a lot better too’. And then I return to my world of lowered expectations because it’s just one of the ways in which we cope.

      I think of you often–hope you are enjoying the fall. I’ll take a big hug from Toronto 🙂


  10. Carolyn Kersten

    I really loved he last sentence!


  11. sweet linnea= thoughts of you keep popping in my head, and then i remembered your blog and did you know when you google linnea duff you’re the first website that pops up?! ha! i’ve always thought of you as a superstar…

    i’m so grateful our orbits crossed paths. i don’t want you to take this the wrong way, but for some weird reason i’ll always have this warm and fond memory of you whenever i pass through tjmaxx because of a time years ago when we saw each other there, and we did our catching up thing and our birthdays were coming up and we were happy to be in each others company, and i think that’s when i knew i love this chick! you’re so much more than a fashionista baby, and i just feel REALLY blessed to have connected with you, even though much time passes between our communications. so if there’s a way to be in your company anytime soon, i’ll take it…here, there or anywhere would be good. i love you much and will always treasure our friendship.

    • Beth, it’s funny, I also find that day (in TJMaxx of all places) popping back into my head. I think I first fell in love with you when we sat next to each other at dinner in Ann and Chris’ pink house–chatted, and discovered we were almost the same age. Bottom line, you and Johnny are just good people, and though we never got to spend enough time together, I loved every minute of it.

      The rest of October and November are crazy–but after that, maybe we can get together. Come our way, or we’ll come yours, or you can meet me in Boston (I’m here every week).

      Love, Linnea

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