I have been waiting to feel better to post a hello and all is well.
We have had a rough week. I was tired the days after chemo. Fatigued. I think it was caused by the Temodar. Sunday I felt pretty crummy, and thought I could cure it by a walk in the mountains. It was beautiful, but I felt no better.
Monday we added some serious cramps and diarrhea. Josh notes here that I really am living my worst nightmare if I have to talk about my bowel habits. I am pretty private.
I called and reported what was happening on Tuesday and they had me go directly to the the acute care clinic. On our way out the door I noticed our beautiful mountains that we were just enjoying covered in smoke. Heartbreak. We got some IV fluids at the hospital, and of course ran some tests. We have been hoping that this was bacteria or viral caused.
We just got the results and unfortunately, I am turning on myself, and have developed colitis as an immune response.
I started high dose prednisone (a steroid) today, and will taper off weekly for a month. And then we can do IPI again.
I pressed hard to make sure this is the right course. I asked if there was anything else I could do, if I could try and wait
it out, if it would possibly go away on it's own. She said no way, I
needed steroids now. I guess my lab numbers that test for this are very high. In the IPI trials, the untreated colitis sometimes ended up in bowel perfusion, and this is what killed people.
The thing is, a steroid to stop the inflammatory response is opposite of what the IPI is trying to do. A steroid suppresses the immune system. I am trying to boost it. It's not like the steroids mean the IPI will not work. But it can't be helping.
Yesterday it rained all day in the valley and up in the mountains. I took it as a sign. I felt my target tumors. The largest two are half their size. The smallest have not gotten any bigger since we started this last combo drug. And I don't know if it's the IPI or the Temodar (more likely, as IPI takes a while to work, but then again, it usually takes a while to develop colitis too), but the cancer is responding to something.
And so, we are a bit discouraged by this little delay in our plan. But honestly, I can't live like I am for long. Everything is going through me. I don't eat at all during the day,
because if I do I cramp like nothing else, and I find it undigested in the toilet. I am drinking gatorade and
feeling like that should do it (a sugary drink, against every cancer diet, but
what can I do at this point?). I can drink about 2 160 calorie jugs a day, which I could survive on for
I don't really like the story problems I'm dealing with lately.
So steroids it is. In a month I can do another round of IPI. So we won't be too behind the schedule, and we get to take the Temodar as scheduled.
They say I should be feeling good in a couple of days.
Not ideal. But we are far from the ideal situation here. At least I will be able to eat. I'm starving!!!