Time for a personal update

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.

25 responses to “Time for a personal update

  1. cheryl shields

    Yipee, I am so happy that you are doing better. I look forward to hearing more good news from you. You rock!
    Cheryl (aka – purpleshoes)

  2. Hi Linnea,
    Thinking about you and sending all my love and strenght! You are amazing and your words are always so strong. We are moving back to France for good this summer and I know now thanks to my dear friend, thanks to you that I want to volunteer in cancer hospital in France to listen to people, to help them…I have learned so much during the battle with my friend and with you…you are an example!

    • Babette, it is wonderful that you plan to volunteer in a cancer hospital. You will bring understanding and compassion to your role, and in doing so, ease the journey for many. Take good care and keep me posted.


  3. Hi Linnea- I like how you buried your punchline in the afterglow of your mother-in-law’s very funny missive. If she comes knocking on your door, however, I would pat her down for suspicious soap bars.

    I am sorry you were feeling so punk, but am so IMMENSELY happy that you had a stable scan, and that you can continue on LDK. Better days ahead!
    Mucho love,

    • Joan, I need to let my mother-in-law know just how many people got a kick out of her suggestion. We are always urging her to employ her talent and humor through writing…

      I am thrilled by the stable scan. My appetite is back and so is my energy. My spirit is lagging a bit behind, but I’m working on exercising that as well…


  4. Linnea –
    Your experiences make my husband’s battle seem like a walk in the park. And please forgive me for saying this, but I am thankful for that.
    I am glad that you are on the road to being regular (LOL). I think that the battle with regularity is the worst of the side effects my husband has experienced (constipation then diarrhea).
    Thinking of you.

    • Robin, there are so many who make my situation look like a walk in the park as well: always useful for giving one perspective (and for increasing gratitude for each smooth passage). Who would have guessed that we would get to a place in our lives (so soon) where regularity is the topic of the day (I guess I could use the smooth passage line again here, but that might be stooping too low). Anyway, best wishes and thank you for yours.


  5. Yeah, the body can send pretty powerful messages. Glad to read you’re doing much better after a week of physical extremes. That’s never, ever nice. (The letter was awesome, by the way. Thank you for sharing it.)
    Cheers to you, your good results, and old fashion methods!

  6. Hey Linnea, So glad you are back to enjoying life again and that the reports were good enough to let you re-start on the LDK. I think one of the best therapies I have been doing for myself the past two or three years is to start each morning by drinking 24 ounces of water. I then wait 45 min before I have anything else to eat or drink. This gives the water a chance to rehydrate my body and I always imagine my liver and kidneys are so appreciative. The added benefit, however, is that I am as regular as clock work. Never have I had a problem with constipation since starting this practice. When people comment on how clear my eyes are and how great my skin looks I attribute it all to starting the day with 24 oz of water. I wish everyone would give it a try!

    • Melanie, I am a big fan of water as well, and have in fact gotten myself in a pickle by drinking too much (I trend low on my sodium and have gone way too low before; not fun). The trick is balance, and it would seem you have achieved an optimal one. I might have to try the morning H2O hydration routine though, as generally black coffee is the first thing to pass my lips in the a.m.

      Nice to hear from you and I hope you are very well.


  7. Sharon Wierwille

    I am so happy for you, for the shrinkage of your tumor, and that you get to stay on LDK. Sounds wonderful. Have a very happy July 4 holiday!

  8. You are an inspiration to us. I love hearing from you. We started on Xalkori 3 weeks ago and boy thing are going well. Keep up the good work as we need you to show us the way.

    • Irma, I am glad to hear that after three weeks in you have a good feeling: generally an excellent indication. Thanks for the good wishes and best of luck.


  9. Thank goodness that’s over. I’m sorry you had to go through it. Again. We need you around longer, so may I suggest bitter melon for the liver? I believe it’s a liver detoxifier, however it’s an acquired taste, so you might try it at a (probably Asian) restaurant first. Also, I believe pineapple has something in it that makes one “go”. I’ll have to check. Relieved you’re feeling better!

    Hang in there, kiddo.


    • Jazz, bitter melon is a new one; I will need to look into it. Happily, I love ‘bitter’, so if the name is descriptive, it might be one for me. And pineapple is something I always happily ingest.

      Thanks for the advice and good wishes and I hope that you are hanging in there nicely (and that you conquered your ant problem).


  10. Linnea, you inspire us all. Thank you, Kris

  11. So sorry to hear you’ve been having such a rough go of it. Glad to hear things are looking up. Your ‘mum’ is hilarious! Blessings,
    carol ann

    • Carol Ann, thank you. Already, I am feeling much better. It is amazing what our bodies can do…(and yes, my ‘mum’ is hilarious–she is going to be pleased that we are not the only ones who think so).


  12. richard polonsky

    Hello Linnea – sorry to learn that your road to recovery is such a long and trecherous path but completely confident that you can do it. Kick cancer’s butt!!
    I am inspired by your fight.

    • Richard, thanks, my friend. Most of the time I am fairly sure footed, but I took a digger last week. It happens. Already, I am feeling better again and working on getting back in fighting mode.


  13. Linnea, I read your post on the day it came out and it has continued to stay with me. Your honesty and openness in sharing your story is so amazing and I remain impressed by your courage and persistence, and completely inspired by all you are doing and who you are. Thank you.

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