Hello, and sorry for the 6 weeks silence, and thank you for all of the encouragement.
It is now 30 September 2014.
First the good. The fluid around my heart (pericardial effusion) *and* oedema (fluid retention between my torso and feet) have all gone away. In fact at my last cardiology follow up the Dr said of my ECHO that it was as he would expect his own heart to look. My Oncology team also spoke with a cardiology person and got approval to switch me off of the Amiodarone (yay!) and onto a much less-frightening heart date reducer called Bisoprolol Fumarate. My heart seems to be fine now.
Alas, shortly after my last, long post, my breathing became very short indeed. They tried giving me a red blood cell transfusion as I was badly anaemic, but this extra fluid seems to have further squeezed my lungs off and they took me into hospital and drained 2 full litres of fluid out of the relatively new *right* side pleural effusion (note that my cancer and the initial pleural effusions are on the left side). The drain did it's job in about an hour but they kept me in for several nights to be sure it wouldn't produce more before removing it and sending me home. This was ultimately a good thing as my breathing was now much improved.
Alas, again, my blood test numbers for several elements were now too far out for any trial, let alone any further treatment. This was a bad moment, because until they could figure out why those numbers were so far out, there was nothing they could offer to treat my cancer!
In time, perhaps due to improved breathing, perhaps due to getting off of the Amiodarone, who knows, those numbers came down enough that Kevin Harrington offered me a course of traditional chemotherapy (I was still out of line for the ATR-inhibitor trial on one blood test element, though it was slowly reducing).
So! 20 days ago I had a round of good ol' Docetaxel and Carboplatin. I gather these are relatively 'old school' chemo drugs, and nobody knows how effective (if at all) these may be for my cancer at this point, but it's a treatment option that a) may buy me some time until something better can be figured out, and b) could put me back into consideration for the Antibody phase 3 trial (which is currently reserved for those who have had a platinum-based chemo within 6 months.
This chemo was, to be British about it, pretty rough. The anti-sickness pre-medication worked well and I had no nausea, but I did have bad broad gut paint and then diarrhea and related cramping. I also naively thought the process would last about three days. But no, more like 8 at least.
At this point my main complaints are mainly shortness of breath (am I anaemic again? is my right side pleural effusion coming back?) and of course, chemo brain. After 9 weeks off work since my heart scare and through first chemo, I put in 4 half-days back at work up until yesterday.
Today I've started the pre-medications, I will go into the hospital to give a blood sample, and I have my second chemo dose tomorrow (1 October). I hope we've learned better how my body responds to this particular chemo. I've also had some very good advice from the Trininty Hospice nurse who makes house calls (basically, between the advice and what we've learned, use more oramorph (within reason) for the gut pain, and use Imodium for the diarrhea at the right time).
Once the dust settles from the second chemo they'll assess me to see if it has had any effect, and then we can decide a next path. More of these chemos? Up to 6 rounds. Or, a trial of some form or other?
My weight is stable at about 133 lbs (60 kg) and I'm very skinny. I've also shaved my head again as my hair is all due to fall out anyway.
So, my options are thinning out, but we carry on.
Good luck everybody.
-Seth