You are not incorrect. There was a post up for less than 24 hours. I pulled it at the request of a beloved and if you were paying attention, not who you are thinking. C’est la vie.
First do no harm. In succinct summary, I had a no good very bad week. I also had a successful (as in, tissue was able to be harvested) biopsy and the following day, began my 6th phase I trial—lorlatinib plus TNO-155.
Initially it was all completely noneventful. Vomiting, diarrhea—garden variety and managed. But I was also dealing with increasing pain (possibly the tumor pressing on nerves) and shortness of breath. By week two the shortness of breath could be pretty profound and I was also experiencing night sweats. By the time I had my end of cycle appointment last Thursday, I was feeling really, really bad.
The technician who took my physical intake asked if I was ok–‘your blood pressure and heart rate are through the roof.’ My labs were not alarming but Jess did feel I might be dehydrated. I told her I felt I was experiencing a pleural effusion. And perhaps an underlying infection–those night sweats. In short I believed my body to be under a great deal of stress–that I was in trouble.
We agreed that I would get IV fluids, hold the drug and move up my scan.
First the chest Xray. My right, healthier lung is on the left–dark, as it should be. My left lung has been subsumed. This is only echoed by the CT scan. Airspace on the right–hard put to find any on the left.
There was a pretty clear reason for my misery and steps that could be taken to alleviate it.
A Thoracentesis was scheduled for the next morning. I was going to finish up with infusion around dinner time and then it would be long drive home in rush hour. While feeling like shit. ‘No way’ are you going home, said my friend Diane. I brought it up with the infusion nurse who said being admitted to the hospital was not a matter of convenience. Sigh. Stage IV lung cancer, major pleural effusion, pneumonia, and I have to explain to someone that a night in the hospital would not be about convenience. I live alone, live more than an hour distant, and I am sick as a fucking dog.
Advocate, Linnea. Explain to others what you really need.
Jess Lin called me and that was enough of a nudge. I asked if I could be admitted for the night. She hesitated for a moment (I mean, everyone is accustomed now to me driving back and forth) but then said sure, she would see what she could do.
Turns out there is a pilot program, just a week old, for a transitional Emergency room/ICU affair–kind of a hybrid. Low frills but a warm bed and all the attention I required. I was their patient 🙂
Yesterday morning I lay with my head in my arms as 1.5 liters of claret colored fluid was drained from my left lung. When I started to cramp, the surgeon stopped siphoning. A subsequent x-ray showed pneumonia and a moderate plueral effusion–there will be a redux.
In the meantime, relief was immediate. Excruciating pain became mere discomfort and I was no longer panting for each breath.
The irony? It is highly likely the pleural effusion is a side effect of TNO-155–an extreme form of fluid retention.
I am on two different oral antibiotics now and next Thursday we shall scan again. It the effusion is out of control, we will deal with that. If it has subsided to any degree, we might be able to assess my cancer, and to make a decision as to whether it is worth risking another round.
Hopefully the pneumonia will begin responding as well.
In the meantime this battered body of mine is resting. A lot.
PS: My friend Diane and my friend Melinda started texting each other. And Diane told Melinda that she tracks me on a find your friend app. Which, of course, Melinda wants in on now too. Two of my many angels, joining forces, on my behalf.
I focus on the fact you are in much less pain and your breathing is better, emphasize the positive. And you’re tracked by two angels. ✊🏽❤️
It will all be ok xxxx
Damn! That’s harrowing! You are, quite literally, writing the book on self-advocacy. Glad you got some relief for the effusion. Hope that fucker doesn’t come back. Hope the cancer is shrinking.
Sending you love and hope Linnea
No question, that all sounds really horrible. Sheesh. That a patient should have to be her own advocate while undergoing all that. And participating in a trial. But, so glad you got some relief and a hospital bed for the night. Hope you get all the rest you need, and more and more relief. Much love.
You Mighty Woman. Sending all my love.
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