It was

Me giving me encouragement: the Wall of Hope on floor eight of the Yawkey building at MGH. When I first started getting treatment, a secret goal was to one day appear on the Wall of Hope. 🙂

A long, long day. But in the parlance of my kind (the terminally ill), a long day beats a short day all to heck.

First, my life is blessed with a plethora of goddesses. Childhood friends, my daughter, sisters, my many new friends, nurses, phlebotomists, counselors, medical doctors. Men are great and I love a heap of them as well but this group of women has been my consistent go to for the tough stuff.

One goddess was in tow yesterday, my friend Sally: pals since the fifth grade. I am beginning to realize how beneficial it is to have company at these visits, after years and years of going it alone.

I had an appointment with the goddess who takes care of me from the neck up (as I like to say), Mary Susan Convery, my thoracic social worker. She keeps my head on straight.

A quick trip down Charles St for a hug from my daughter (Sally is her actual godmother) and a delicious lamb sandwich at Tatte. And then a long wait in those spaces appropriately called waiting rooms.

Oh, the irony. Those of us to whom time is so precious spend far too much of it waiting.

Anyway, the action got started around four with a visit from the head goddess, Alice. Chit chat about how I am feeling (great for the moment, on that artificial steroid high, my dyspnea temporarily under control.) But I was eager to cut to the chase—how about those scans? She had read them herself and her assessment was that they were mildly worse than the ones in December. Now remember this is while getting chemo so bummer. Of concern is the lymphangitic spread as well as the fact that the slight amount of fluid in the bottom of my left upper lobe is also increasing.

Alice puts more store in symptoms though and mine are not encouraging. Definite downward trend. So we agreed that I’d go ahead and get chemo one more time (and possibly two, depending on timing and tolerance) in the hope that it is at least slowing down progression.

There was a bright spot though and that was in the form of options. I figured we were down to one–lorlatinib plus a mek inhibitor. But Alice described yet another possibility. That after all these years on TKI-s it might be good to take a break. Maybe let my cancer forget some of what it has learned. To try a novel therapeutic, one my cancer is completely naive to.

While getting infused I signed the consent forms for a phase I clinical trial for a drug called DS-1062a; an antibody drug conjugate which targets a protein called trophoblast cell-surface antigen2 (TROP2), which is found in copious quantities on the surface of cancer cells.

This sounds exciting to me–a fresh possibility. But it is going to be intense. First there are the necessary hoops to jump through in order to qualify, including a lung biopsy, heart scan, ECHO, and eye exam. And all that blood, blood, blood (30 teaspoons for the first three cycles).

Every three week infusions but the first week, at least two additional visits. And then for the subsequent nine weeks, I return to the hospital once a week, with a second lung biopsy at week two. It is going to be consuming–that is, assuming I qualify.

But it also has given me fresh hope (I love the luxury of choices).

Good thing. Chemo may not be kicking cancer’s ass, but it is kicking mine. My liver is a tad inflamed–Alice asked me if alcohol might be involved. Truth? Yes. Goodbye to that for the time being. Sally filled me with healthy fluids last night and this morning she made me oatmeal, hot lemon water, and a vegetable chicken soup. I am in good and loving hands.

So yes. Stability or response would have been the preferred report but this feels if not a door, at least a window. And that’s what I need. Fresh air and a bit of a vista to contemplate.

xo

14 responses to “It was

  1. Just a note to say, “I’m thinking of you!”

  2. +1 to Joan. Having you in my mindheart.

  3. Fingers crossed for you!

    Best hopes,

    Craig jn PA

    (p.s., and let me know if you want my spare Inogen G3 POC. It made a big defference to my walking my dog when my oxygen levels were falling.)

  4. While I can see the aspects here that are not “Top Drawer”, we both know that the most interesting things are usually hidden way behind in that drawer further down! The fight goes on and that is the most important takeaway!!❤️✊🏼

  5. We celebrate every window, every crack! Glad you have your minions of love and support—know there are
    zillions more out here in the wings! Love you, Linnea. Thanks for the update, thanks to Alice, thanks for YOU! Keep us posted. ❤️

  6. Your goddesses have been supporting you for a long time it would seem – continuity is so important in this this game – You a ‘playing a blinder’ – Your strategy is ‘spot on’ – Your carers’ tactics great –

    Xxxx

  7. And onward , linea , hope in hand
    Best wishes always Sandra xxx

  8. Awesome and ironic you looking at you. On to the new drugs

  9. I love that you have a Sally in your life. Your journey is helping all of us.

  10. Great that you have such a loving group helping you, Linnea. Sending more caring and admiration for your attitude from afar.

  11. Peace. I have followed your story off and on for several (many?) years. Your smile is captivating… may it brighten many days more. – ellen (@play2cre8)

  12. Linnea, we got you!

  13. Keep up the fight, Linnea. Thanks for sharing; you are truly an inspiration. Praying for you.

  14. BTW, the data Table 1 in this research article suggests that 7 out of the 10 ALK+ adenocarcinoma lung cancer patients they tested had “high” levels of TROP2 expression (similar to lung cancer overall), suggesting odds of benefit might be respectable for this trial. Yes, that’s a very small sample size but encouraging to see that having a useful targeted driver mutation like ALK doesn’t mean low odds of the relevant marker like with PD-1/PD-L1 checkpoint immunotherapy.
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5438686/

    I wonder if there is a simple IHC test that can be used on your last biopsy sample to know your specific TROP2 expression level better? Even if not, I’ll hope the odds of actual benefit (with tolerable/manageable side effects) are higher than for regular chemo.

    Best hopes,

    Craig in PA

Leave a Reply to anandshashi Cancel reply

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

WordPress.com Logo

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

Google photo

You are commenting using your Google 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