And so it begins

Milk thistle and dandelion tea plus a hella lot of water and I got those enzymes down more than forty points. So my biopsy was a go yesterday.

Happy to report that it all went smoothly and to my delight (the perks of a progressing cancer) the surgeon was able to go in from the side of my chest rather than straight through my left boob (no fun). This meant that A. I could watch the biopsy on a screen–not everyone’s cup of tea but I thought it was wicked cool–and B. my time in recovery was spent on my side rather than flat on my stomach; so much more comfortable.

It was a long, long day and big credit to my friend Diane who ferried me to and from. I am so very grateful for my incredible cadre of friends.

This morning a friend of Diane’s kindly picked me up at 5:30 am for the first day of the DS-1062a trial (‘DS1062a is a trophoblast cell-surface antigen 2 (TROP2)-targeting antibody drug conjugate’).

Room without a view

I have now been at the Termeer Center for Targeted Therapies for almost five hours. In that time I have been weighed, had two vials of blood drawn, and the first of three EKG’s taken. I have also peed twice, napped, and met with Dr. Lin, my new oncologist now that I am on trial. Drug was finally released an hour ago but it is frozen and takes three hours to defrost, so infusion will not begin until one. Lots of hurry up and wait.

Last night I was pre-dosed with five 4 mg tabs of dexamethasone as well 360 mg of fexofenadine, both of which will be repeated just prior to infusion. There have been lots of reactions to this experimental therapeutic but fortunately I am entering trial after MTD has been established and they are getting a better handle on how to handle side effects. Also anticipated are some pretty gnarly sounding mouth sores (dime size, painful plaques) which could put a crimp in my dating schedule 😉 I am to prophylactically swish with a steroid mouthwash and have a paste for when they emerge. I have been advised that I shall likely lose weight (those sores) and may lose my hair as well. And there have been some eye issues, so I have been using lubricating drops. Aside from that, fatigue and mild nausea. There is always a price to pay.

On a positive note, some of the side effects of lorlatinib have noticeably receded. My skin—a mess of crusty sores as of late, has begun to clear up and heal (hallelujah). I had to go off of statins because of my elevated liver enzymes and my cholesterol was through the roof last time (high 300’s) but hopefully that shall start to come down as well. The cadence of my speech is speeding up (‘So you’re not going to sound like John Wayne anymore?’ asked one of my friends) and I am already feeling more like me: Linnea pre lorlatinib. Less rage-y, more clearheaded. I like it.

So consider this installment one. More to come post infusion.


9 responses to “And so it begins

  1. You are such an amazing warrior, Linnea. Thank you for all you do to further science. So many of us will benefit from your sacrifices. Mike and I ask continually for all the good the universe has to be sent to you.

  2. You got this one too, it will work and you”ll be back participating in your life very soon!!

  3. I wish you all the best Linnea

  4. Will be looking for the second installment! As you already said, it’s one thing after another, good and bad, and if it’s not one thing it’s ten others! Thank goodness you have friends to help in everything – transportation, support, etc. As a woman I met said recently, “I’m still doin’ ” – me too, and you too!

  5. You’ve got this!


    Sent from Dawn Horner’s iPhone


  6. Sending you love and hugs, you are one strong lady. I love that you are so matter of fact about the side effects. Kick some arse my lovely. Cant wait for the next instalment. Xxxxx

  7. Julia Kristen Gaynor

    I leave for vacation Friday morning, back next Thursday night – let me know if you’d like to crash at my place for the week!

  8. Sending good thoughts Linnea 🙂

    On Tue, Feb 11, 2020 at 11:32 AM life and breath: outliving lung cancer wrote:

    > linnea11 posted: ” Milk thistle and dandelion tea plus a hella lot of of > water and I got those enzymes down more than forty points. So my biopsy was > a go yesterday. Happy to report that it all went smoothly and to my delight > (the perks of a progressing cancer) the surg” >

  9. My prayer is that this drug will be well tolerated by your body, that it is effective, with minor side affects. We know that every body is different. May you have Hope. Love, Lynda

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