Here we go

Let me begin by stating how fortunate I am to have access to incredible care.

I had a chest x-ray and labs in Boston today. My bloodwork was good and the x-ray noted alectasis, but that was also called out in last week’s CT scan and there was no notable difference.

When Dr. Lin came in to see me we talked about my fainting episode, general underlying crummy feeling, and the increasing pain in my left shoulder. Part of my malaise is likely attributable to a sinus infection, so I am starting antibiotics tonight. The fainting is not easily explained–I had an EKG and it was normal. I had another episode of lightheadedness this morning while lying down, so she doesn’t feel it is syncope. It’s now been almost a year since I’ve had a brain MRI so I will get one next week.

As for the shoulder, unfortunately it is likely related to the cancer in my left lobe. And the only real way to address it is to see if we can arrest the malignancy. To this end, she said she felt that waiting another month to start the next clinical trial might be too long.

The trial we had talked about—lorlatinib plus binimetinib–had a slot open yesterday and my fast thinking oncologist grabbed it for me. I signed the protocol today, and next week prescreening will start. Her intent is that I shall start the trial the following week–my fifth phase I trial (this is IB–dose escalation phase).

I asked her if she thought there was yet any real chance of reversing the course of my cancer. She said yes. She also asked if I would be willing to try other chemotherapies. My response was affirmative, but I also told her that if it got to the point where further treatment was likely fruitless, I wanted her to be totally honest with me. She assured me that she would and also reminded me that at any time, I can decide that enough is enough.

On the ride home my mind was remarkably clear. I was jonesing for some potato soup—something I hadn’t made in years. And then–oddly, cornflakes. Another sentimental selection.

So yeah. Almost sixteen years in and this shit doesn’t get any easier. But–and this is wildly important–there are still options. And options represent hope.

6 responses to “Here we go

  1. “Options” I Love that word!!❤️✊🏽

  2. You could check if you can get the biopsy requirement waived. I am on my third phase one trial since February. For the third trial I requested they waive the biopsy requirement and they used extra tissue previously collected for the second trial. With covid, some protocol requirements can be relaxed

  3. Hope. Day by day! Keep kicking ass and making this all look easy with your words and fierce spirit!

  4. Options. Options are good. And I hope you’ve at least gotten ahold of potato soup and cornflakes! xoxo

  5. Hi Linnea – I am wondering if they considered a bone scan for your shoulder pain? I am concerned about missing something there –
    You are in my thoughts and I am constantly send you and Diane positive energy!!
    Karen Arscott

  6. I’m so glad you ask the questions some patients are afraid to ask. They need to know they can ask for whatever they need and NOT be afraid to ask..Options are part of creativity and MGH has a great creative team. You are lucky 🍀

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