Branching out

So. The goddess came through.

First we reviewed my scans and discussed the findings:

Sub-solid mass like opacities in the left upper lobe have increased in size and attenuation since the prior study as described.

Persistent and slightly increased groundglass and interlobular septal thickening in the basilar left lung, suggestive of lymphangitic carcinomatosis. 

Additional sub solid nodules in the left lung are stable or slightly increased in size compared with the prior exam. 

Slightly increased small loculated left pleural effusion.

No surprises there and I am grateful that the word slightly predominates. It is clear where this trend is going but it would also seem that we have time to figure out what the best approach shall be.

First, I am to start nebulizing in an attempt to address my bronchorrhea–the source of the persistent crackle in my left lung. And should it get worse, there is the option of combining pemetrexed with lorlatinib–which would mean leaving the trial and getting lorlatinib by prescription. Avastin could be added to the mix for possibly greater efficacy. Alice is going to start the ball rolling in that direction so that I can apply for financial assistance to help pay for the deductible on lorlatinib–just in case. However pemetrexed kicked my butt energy wise when I was on it seven years ago, so this course will only be as needed.

Most exciting is the news that Alice is going to be opening her own trial at MGH in a couple of months–combining lorlatinib with a MEK inhibitor–binimetinib. She feels this is something that could be effective in my case, so it is my first choice.

Also encouraging is what has been going on behind the scenes in Alice’s lab. My last biopsy identified three secondary acquired mutations. One, G1202R, I had previously and lorlatinib is likely at least somewhat effective against that yet. The other two are newly acquired: S1206F and G1269A. S1206F is rare; Alice has not seen it in any of her other patients. However G1269A is becoming a more common mechanism of resistance to ALK inhibition, along with G1202R.

Alice then shared with me that they have been attempting to make models of all the possible combinations of my three mutations, so as to test drug against them.

I tell you what. This is not the Cadillac of health care, it is the Bugatti La Voiture Noire. It is incredibly humbling to understand the astounding degree of highly personalized effort being expended in the interest of saving my ass. So I damn well better show up.

Yes. That branch just got a little bit thicker–it might even be sprouting some new growth. Alice’s parting words to me were ‘If anyone can do this, you can Linnea.’ To which I responded, ‘If anyone can do this, we can, Alice.’


13 responses to “Branching out

  1. Good news! Almost makes it to fantastic news. Science keeps coming to the rescue!!

  2. Wow this is great news and fantastic info

  3. This blows me away. Linnea you are a legend and to have Alice Shaw batting for you is the best possible combination. Much love and hugs to you.

  4. Hang in there! You are amazing!

  5. Yes YOU-TWO Can!!✊🏼✊🏼❤️

  6. Tears of joy dear! You CAN do this!

  7. So happy to hear the amazing Dr. Shaw has options for you! As a patient of her’s for 12 years, I know the passion she has for ALL of those in her care; we are so blessed to have her as our incredible thoracic oncologist!! Sending healing thoughts your way and prayers that Dr. Shaw will continue saving lives every day. XOXOXO

  8. You can do it!!

  9. This is incredible and you are incredible. Keep up the good fight!


    Sent from Dawn Horner’s iPhone


  10. Karla Castro-Frenzel

    Awesome post, Linnea! It was beyond touching to see you and Dr. Shaw at the Summit this summer! You inspire me every day. Thank you for posting and sharing your journey in such vivid detail. You inspired me to really tack to meditation. You’ve shown possibility, again and again. May grace pour through you both in that awesome partnership between patient and doctor!

  11. Keep the fight. A lot to digest. Amazing personalizes care. Best hands!!!! Luv Sean .

  12. Keep the fight. Amazing personalized care. Go you gots. Best hands!! Luv Sean xo

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