One two punch: medical and emotional update

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.

27 responses to “One two punch: medical and emotional update

  1. Hi Linnea, I just want to say that you have to keep going. I know that your moor could be up and down…and it is normal. You are a fighter and such an amazing woman!!!!! I don’t have all the words I need to help you, just thinking of you… Today, it has been a very good day for my best friend, her scan shows a significant decreased for the tumor. I hope you will feel better. Elisabeth

  2. Carol Ann Shanklin

    Linnea, just want you to know that SO many are pulling for you! ‘Drug holiday’ does sound fun; wish it was better news. Dwell on the ‘holiday’ portion and feel better soon! I’m glad you have a ‘food pushing’ husband! 🙂 Blessings, Carol Ann

    • Carol Ann, I can’t tell you how much it means to have my cousin whom I’ve not seen in years offering so much support. I really appreciate it.


  3. HI Linnea,
    Haven’t commented in quite a while – but you are always in my thoughts and I am constantly sending positive energy your way!!! Wishing you well my friend….hope you can get some rest and drink plenty of water!

  4. Linnea, my husband is on a drug holiday too. Its been a week, he has been taking Xalkori for 2 years now, but he’s having terrible trouble with his balance and he can’t see clearly at all anymore, can’t read or see much on the tv. Waiting to see if its the drug or something else. It isn’t much of a holiday, I would agree with you whole heartedly.

    Just wanted to let you I’m thinking about you too.


    • Lisa, thank you for your thoughts and I am sorry your husband is on ‘holiday’ as well. More importantly, I hope they get to the bottom of his current symptoms. Best wishes sent your way…


  5. Dear Linnea, Thinking of you here across the pond – as I am sure many are across the world. Many ups and downs on your journey, but I’m very sure Dr Shaw will guide you through this wobble. Enjoy the rest, food and ‘holiday’. Much love, David x

    • Dear David, it always cheers me to see a comment from ‘across the pond’. This time the up will be down (lower enzymes).

      Love, Linnea

  6. Dear Linnea: Do let David push his cooking on you! Rest up. Get through this wobble with Alice (Dr. Shaw). And know all the love and good wishes coming at you pretty much constantly. xoCristina

  7. Linnea, We are all crossing our fingers for you too. I’m sure this will be turn out to be one of the infinite number of hurdles that you have experienced and will experience. It goes with the territory.
    Wow, a cook living in the you get to request what you want or does David stick to a menu??
    Anyhow, much love and good thoughts sent your way. I think we all suck at sad, and that also goes with the territory.
    With much fondness, Cheryl

    • Cheryl, there was a time where I did most of the cooking, but David has always enjoyed the process–much more than I do. He works from home now and has pretty much taken over the kitchen. I couldn’t be more pleased. And thanks for those crossed fingers.


  8. HI Linnea…..I was so sorry to read your recent posting. I want you to know I am sending you all the positive chi I can – I know your courage and strength will get you through this “punch” also. I’m so glad to read about all the support you have from your husband (and friends). It’s clear you are surrounded by love, which I believe can heal miraculously.
    love, Laurie

  9. Linnea – Haagen Dazs ice cream is your friend. Half a cup of Dulce de Leche has 290 calories. If you are on a chemo holiday, might as well treat yourself.
    love, Beryl

    • Beryl, good to know. In truth (as I am now writing these responses several days later) I lost 6 pounds this week, so I think I shall become reacquainted with ice cream.

      Love, Linnea

      • Linnea, tell David to use a large plate to put your food on. It fools the eye into thinking the portion is very small and makes eating it less difficult. One of the tricks of the trade!

        love Beryl

  10. Dear Linnea, I left you a message on Inspire too. Please keep us posted, and the ice cream idea sounds very medicinally appealing.
    Love love

    • Joan, I will look for that message on Inspire–I fell out of the loop for several days but am back home and on track now.

      Love love, Linnea (hope you’re soaking up the rays on a beautiful Island)

  11. Dear Linnea
    Sending tons of well being, peace and prayers your way…every little bit helps!

  12. Down, liver enzymes, down!! Linnea, i hope you feel better soon. Eat, drink, do as you like/need! Maybe Spring will come and cheer you up, with flowers, butterflies, and artistic inspiration.

    Will you return to trial on a lower dose? Best of luck with everything. Thinking of you.


    • Jazz, I hope to go back on trial (and yes, probably at a lower dose). Much to talk to my oncologist about at our next appointment.


  13. Hi Linnea. I have never commented here before, but I’ve been following your blog for a few months now. My mom was diagnosed with NSCLC (Pancoast) in 2009 and we’ve been fighting it ever since. Your words have often been my little ray of hope on those horrible days when things get a little tougher than usual. I was so sorry to hear about your temporary setback … I’m sending you positive thoughts & well wishes all the way from South Africa.


    • Kelly, I’m sorry your mom is in this club as well and I wish her the best. I also thank you for your comment and your kind thoughts–all the way from South Africa is pretty cool!


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s