Category Archives: LDK 378

Now that it’s all over but the shouting, I can tell you that I am ever so happy that last week is history.

It had been an unsavory mix of constipation, infection, insomnia and liver toxicity. I felt awful, with a fever three nights running. Aches and chills, splitting headache, nausea and a total absence of appetite. On Tuesday, I started taking levaquin. On Wednesday, I had a chest CT scan and labwork:  my liver enzymes, which had been rock steady for weeks, were starting to climb. I was to stop LDK378 and levaquin both. Although exhausted, I never managed to sleep a wink that night; my mind going a million miles an hour. I have learned since that insomnia can be a side effect of levaquin, and in conjunction with nightmares, hallucinations and a host of other symptoms, a possible sign of a serious reaction.

Over the next two days my liver enzymes continued to rise, peaking at around ten times normal, although still significantly less elevated than the last go around with toxicity. I started on azithromycin for the chest infection and Thursday evening, after eight days without a bowel movement (which proved stubbornly resistant to both Miralax and glycerin suppositories), a prescription of lactulose finally did the trick. As tired as I was, I could have done a little jig. I also received this congratulatory email from my mother in law, with some advice should I ever find myself in such a ‘situation’ again:

Hallelujah(!) and (I’ll say it, so Kill me!) praise the Lord for Ducolax!  Could not believe what Dave reported about your recent days of pure hell.  My first thought was of the simple suppository (mum used to carve a wedge out of ivory soap to ease our blocks of cement to the Glory Land) but it seems that on this carefully controlled regimen, one cannot revert to old fashioned methods.  Not to digress, but to digress, John nearly died of croup several times as a young’n.  I remember many nights spent in a bathroom full of steam and, in the worst scenario, trips to the hospital at 90 miles an hour.  Then I heard that my Aunt Patty (mum’s sister), as a child, had croup as well, and once, during a severe bout when she was turning blue, Grampa Tripp dripped 2 drops of kerosene onto a sugar cube and fed it to little Aunt Patty.  It broke up the congestion and she resumed breathing!  This has nothing to do with what you’re going through, but it goes to prove there are times, when all else fails, Old Fashioned methods should not be dismissed.  When one has ingested food for 8 days and nothing is coming through the Glory Land, the troops have to resort to surprising the enemy from the rear.  It has worked in wars through the ages, and you, my Darling, are fighting a war.  I think you need me, my knife, and my ivory soap.

 I love you, mum

 P.S.  I have a whole box of rubber gloves left over from a few years ago…..

Today we returned to Boston to meet with Dr. Shaw, and my liver enzymes are trending down. Better yet, Dr. Shaw got the okay from Novartis for me to continue LDK at a dose of 400 mg once those enzymes have returned to normal– I had been certain I would only be allowed to go back on trial at a lower dose if at all. AND, the CT scan, aside from a new area in my right lung which likely represents infection, was STABLE. In fact, there is a “Slight decrease in ground glass opacity at the lateral left base…”

I really hadn’t expected the wealth of good news today, and in fact figured the focus would be on what therapy we would try next. I am thrilled that I will be allowed to stay on LDK378 longer, and happier still that my scans were stable.

Obviously, there will be no more sips of wine or outlaw margaritas, no more levaquin or NSAID’s. I’m going to focus on eating foods that are beneficial for the liver, and yesterday I had beets for breakfast, lunch and dinner. I’ve got some weight to gain back, and making sure I stay regular is a high priority.

My body sent me some powerful messages last week, and it got my full attention. I’m listening, and will continue to do so.