I went in last week to get my first exciting pleurodesis for my pleural effusion (draining of my fluid in the lining of my lungs). I had had a cough for a long time, but I assumed it was just the metastases in my lungs, I didn’t realize my lung was shrinking away and being surrounded by fluid that now also had metastases in it. They pulled out 750 ml. It was mostly just uncomfortable until the very end where it hurt a bit. Deep breaths hurt for several days, so I was trying to keep pain under control and take deep breaths to try to stretch my lung back into the space the best I could.
Yesterday I went in to get my intrathecal chemo and I had had my cough come back along with shortness of breath. We decided to go ahead and order a chest x-ray and much to my disappointment I had built up a decent amount of fluid in my lungs again within a week.
I had asked my Pulmonologist what does he look for to put in a Pluerx catheter (self draining), he told me it depends. It looks like this much fluid I generated in a week is enough to get a drain. The hope is that once I start my next treatment the fluid will dry up and the catheter can come out pretty quickly. They were going to try to get me in today, but they weren’t able to. I get the catheter put in tomorrow, one more night of not having an uncomfortable tube coming out of my body (not that fluid build up is super comfortable now that I know what it feels like).
I have the world’s busiest week coming up it feels like. Tomorrow is the Pluerx install, Friday intrathecal chemo, Friday night we have the Pink Ball with Komen in Salt Lake City (more on that later!), Saturday are my MRIs, Tuesday is my appointment to review my brain/spine MRI (checking on my brain tumors and my leptomeningeal metastases) and time with my oncologist to talk about treatment. I am more anxious about getting back on something now that this fluid is doing what it is doing.
I have been reviewing clinical trials and am getting the same old story (no brain metastases allowed and several leptomeningeal mets are like an !!! no). We are still waiting for the pathology results. Chemo (Doxil) is still on the table, it was highly recommended at LBBC for brain mets (pegylated lyposomal doxorubicin = Doxil). I am considering looking at a combo treatment opinions from somewhere like Avera, you can read about them here. That would require my results be back from Foundation One and Guardant 360, which will take a little time and possibly be backup if the next line doesn’t last.
The good news is that we did get out to do our hot air balloon ride. I have been delaying scheduling it as it never quite seemed like the right time. I had it booked so we went for it.