May 09, 2013 - 7:47 pm
I haven't been on this board much for a long time. I took a nice break from treatments and didn't post anywhere too much. Also I tend to "hang out" on Colon Club and in COLONTOWN on FaceBook - in particular moderating FOUR CORNERS which is for stage IV or recurrent patients only. At this point of the game I find I can do the most good there, and get the most support too - with others who "get" what I live with daily, and I understand them too. I do keep up with many of you that I met here through FaceBook. The loading time for pages here was so awful that I really did not have the patience anymore. I was pleasantly suprised today when pages loaded 20 times faster than before!
I'm back in treatment again. I have more distant lymph node mets than ever in the past, and they are larger than ever. I'd never had one over 2cm before and now I do. But the SUV is no higher on any of them now than before. I also have ascites that comes and goes in my abdomen, and pleural fluid on my lungs. It was bad enough to partially collapse my left lung. It felt so good to have over 1/2 liter drained off my lung - it reinflated! (Looked pretty gross though - yellow frothy stuff.) My being tired and out of breath a lot was mostly due to not enough oxygen. Pathology showed no cancer in the lung fluid. They tried to get the ascites from the abdomen, but on the day I went in, the fluid was gone. It has shown up with uptake on a PET, so when I get that it probably is malignant. I'm just lucky that for now it resolves on its own - comes and goes - rather than just staying. I still have bone mets, but they are pretty well controlled. The SUV on T6 is 7 instead of 17. That is my most active bone met, so really they aren't bad.
I'm on Irinotecan and Zaltrap again. Hoping for a quick response to it like I got last time, but hopefully without the severe side effects. This time I'm being proactive with medical marijuana and so far it is really helping. My CEA was 6.7 two weeks ago, and last Friday before my first tx back on chemo it was 8.7. So it is a good thing I'm getting back on the chemo to beat the beast back down again before taking another break.
I wish everyone "well enough." (Sure do miss Rob)