A bit too close to the edge

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.

17 responses to “A bit too close to the edge

  1. Hi Linnea, I keep you in my mind and in my thoughts. If we have the opportunity to visit Boston, I will come and give you a bottle of French Wine:-))) Keep going

    • Elisabeth, thank you for the kind thoughts. And I hope that the day will come that I could drink that bottle of wine 🙂


  2. Linnea, I am so glad you have been sprung from the Big House. I hope you got your 20 bucks and a bus ticket, so that you and your liver are free to move about the country! Let David fatten you up, and let’s look forward to better days after this little setback.
    Love you

    • Joan, they did forget to slip me a twenty, but not to charge us for parking. Figures. The fattening has been rather fun so far…looking forward to letting my belt out a notch again.

      Love, Linnea

  3. Welcome home.

  4. I have been holding my breath since your last post ( not literally.. obviously) and checking for an update multiple times a day. Hugs to David for fattening you up, and to you, Peter and Buddy just cause I miss you all. You are always in my thoughts –

  5. Really glad to have you out of that bad week and into David’s cuisine. I raise a glass — of sparkling water, of course — to you and progress, dear Linnea.


  6. Pat & Will Plattner

    So now you will just have to get drunk on life! Not a bad option!
    Take care and enjoy David’s food!!!

    • Pat and Will, I try to drink deeply no matter what. That doesn’t mean I don’t/won’t miss the harder stuff. The fattening is proceeding well. Not much in the way of results yet, but all that food will take soon, I’m sure of it.


  7. Glad to hear the official news from your scans and lab work.
    My well wishes and prayers are always with you.


  8. Cheryl, thanks, and it was so good seeing you the other day.


  9. Linnea … You are the only reason I get on my email these days.. You
    are such a colorful writter.. So happy to read your post they offer a great deal of inspiration to me … Lets raise our glasses in a toast TO LIFE

  10. Linnea –
    I’m right there beside you in this photo, and the next ones! Love your photography and I hope when spring does hit your parts, you’ll share those as well!

    I feel your pain, living in prohibition this close to wine country. Enjoy some Squirt grapefruit soda while you can!

    I hope hope hope the lower dose LDK re-challenge is a fix. It’s so tough to be this far out from dx. New agents just can’t get here fast enough 😦 My first scan on trial is less than what I’d hoped (you know – collapsed left lung obscuring tumor, numerous GGO’s in my “good” lung, pericardial and pleural effusions, etc), but I feel slightly better so I’ll take what I can get (slight shrinkage of node in R lung). The 7-in-a-row flights to Colorado are now under my belt, so it’s every two weeks for as long as I can stand the commute and the drug combo works.

    Thank goodness for a husband who cooks (yours, not mine)!


    • Jazz, I wish you’d had a better report. However, it is true that we adjust (radically) our definition of what is acceptable. My husband and I were talking about my current situation, ‘remember your scans are good’ he said. I reminded him that as good as stable at a 45% response sounded, that 2.5 cm of ‘likely’ cancerous area (that likely is just letting me down softly) plus various effusions and sundry nodules and lymph node involvement would still be an ‘oh shit’ moment in the other world, the one before cancer.

      However, we carry on because that is what we do. And yes, the farther out I get the more I feel as if I’m running out of something…time, options, and far too many friends who were in this boat. There I go getting all negative again. Anyway, my husband (the cook) is calling me for lunch. Yes, I am spoiled, but in return I’m a pretty dandy maid and as I like to say, good for comic relief. Stay fun and spirited despite it all Jazz, and I wish you more shrinkage.


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