First, I want to give a quick update. I've started tapering off my steroids this week. I won't finish my entire dosage until after my 4th infusion. Hopefully, the steroids will keep any inflammation in check as I continue to wean off of them. Coincidentally the past couple of days I've had a bit more gas and bowel movements than usual, but I'm attributing it to the fact my diet included a box of donuts and lots of iced cookies. I'm certain the sugar and carbs are playing a tune on my stomach, but I'm keeping an eye on things.
Thursday, October 24, 2013
Friday, October 18, 2013
Ipi #3
So, another quick update from the homefront. As expected, Tuesday we went to Emory and I was given my third infusion. This is the long and short of it. But, allow me to get into a few details along the way.
First: Since the colonoscopy came back with a "clean as a whistle" status, there was no reason to keep me from proceeding with my treatment. The main reason the 3rd infusion was initially put off was because the doctors thought I might have had something more serious than what it turned out to be. In the week from when I started taking steroids to the procedure, whatever was bothering me had cleared up. With everything coming back in the clear, it was on to the infusion. They don't even want to do a reduced dosage, which is a good sign.
Second: They want to completely take me off the steroids. I thought they would at least consider keeping me on a low dosage to combat any ill side effects later on down the road, but they want to begin weaning me off it completely. I'll still be taking my steroids for the next month still, but in reduced dosages each week. I can't just stop taking them or my body will be thrown into all kinds of hormonal unbalance. Right now, I already feel like I'm pregnant with the way I'm eating, sleeping and generally overall feeling. The tapering process will at least take me through the fourth infusion in 3 weeks. If for some reason I begin to have bowel issues again, they said to call immediately so they can work something out.
So yeah, everything is back on track. In 3 more weeks I'll have my "final" infusion, with a CT scan to check the size of the tumors 2 weeks after that. Then, I move into what is called a maintenance phase, where I'll do an infusion/CT scan every 3 months as a check up.
First: Since the colonoscopy came back with a "clean as a whistle" status, there was no reason to keep me from proceeding with my treatment. The main reason the 3rd infusion was initially put off was because the doctors thought I might have had something more serious than what it turned out to be. In the week from when I started taking steroids to the procedure, whatever was bothering me had cleared up. With everything coming back in the clear, it was on to the infusion. They don't even want to do a reduced dosage, which is a good sign.
Second: They want to completely take me off the steroids. I thought they would at least consider keeping me on a low dosage to combat any ill side effects later on down the road, but they want to begin weaning me off it completely. I'll still be taking my steroids for the next month still, but in reduced dosages each week. I can't just stop taking them or my body will be thrown into all kinds of hormonal unbalance. Right now, I already feel like I'm pregnant with the way I'm eating, sleeping and generally overall feeling. The tapering process will at least take me through the fourth infusion in 3 weeks. If for some reason I begin to have bowel issues again, they said to call immediately so they can work something out.
So yeah, everything is back on track. In 3 more weeks I'll have my "final" infusion, with a CT scan to check the size of the tumors 2 weeks after that. Then, I move into what is called a maintenance phase, where I'll do an infusion/CT scan every 3 months as a check up.
Tuesday, October 8, 2013
Better news
I really need to update more. I'd rather have a bunch of smaller posts than one long post that takes forever to read. I can't make promises but I'm going to try. In the meantime, let's play catch up over the past couple of weeks.
First, let's talk about the stomach issues. At this point, they have pretty much subsided. Granted, I was not given my 3rd infusion and I am also still taking a very high dosage of steroids to reduce/prevent inflammation. It took a few days after I began on them for things to die back down to normal. Other than the couple days I had to prep for my procedure, I've been feeling great. There are two side effects to the steroids however. The first is heartburn, which the doctors is said to be expected. This too has quieted down since I began taking it, and nothing a tablet or two of Tums can't fix quickly when it flares up.
The second is a bit more complicated. You see, taking steroids has this unique side effect where I want to eat a lot. Therefore, gaining weight is currently in my future. However, the biggest thing is I've changed what I crave. Prior to this, I've always been a sweet tooth. I'd love munching on candy or cookies or whatever to tide over my hunger. Since the steroids, I've been craving more of the fatty foods. I'm certain there is some psychological thing (as well as physiological) going on from the drugs, but it is odd to say the least. Where before I could probably eat a box of donuts without question, now I could do the same thing to a chicken. Needless to say, my diet over the past couple of weeks has been interesting and I can honestly say I enjoy it more. I'll be curious if it sticks around after I'm off the steroids.
As I mentioned above, I had my colonoscopy last week. The prep for it was no fun, as I had just started to feel better and basically had to stay on an all liquid diet for almost 2 days as well as taking some super laxative stuff to clean me out. On top of this, the steroids were making me hungry like crazy, so I was terrible. They did a scope for both ends, since the doctor wanted to be thorough. He also took a routine sample biopsy of my upper GI. The whole procedure didn't take but about 20-30 minutes and I was discharged within the hour.
According to the doctor, things are looking fine. No tears, polyps, inflammation or anything that he could see. He just believes the Ipi was flaring up my colon and causing me to have diarrhea. But no signs of anything major, such as colitis.
So the big thing now is to see what happens next week. Since the test results were positive, we have no reason to think they won't continue with the treatment as planned so we expect my third infusion to come next week. They may keep me on a dosage of steroids to combat any potential future inflammation, which I would welcome fully.
First, let's talk about the stomach issues. At this point, they have pretty much subsided. Granted, I was not given my 3rd infusion and I am also still taking a very high dosage of steroids to reduce/prevent inflammation. It took a few days after I began on them for things to die back down to normal. Other than the couple days I had to prep for my procedure, I've been feeling great. There are two side effects to the steroids however. The first is heartburn, which the doctors is said to be expected. This too has quieted down since I began taking it, and nothing a tablet or two of Tums can't fix quickly when it flares up.
The second is a bit more complicated. You see, taking steroids has this unique side effect where I want to eat a lot. Therefore, gaining weight is currently in my future. However, the biggest thing is I've changed what I crave. Prior to this, I've always been a sweet tooth. I'd love munching on candy or cookies or whatever to tide over my hunger. Since the steroids, I've been craving more of the fatty foods. I'm certain there is some psychological thing (as well as physiological) going on from the drugs, but it is odd to say the least. Where before I could probably eat a box of donuts without question, now I could do the same thing to a chicken. Needless to say, my diet over the past couple of weeks has been interesting and I can honestly say I enjoy it more. I'll be curious if it sticks around after I'm off the steroids.
As I mentioned above, I had my colonoscopy last week. The prep for it was no fun, as I had just started to feel better and basically had to stay on an all liquid diet for almost 2 days as well as taking some super laxative stuff to clean me out. On top of this, the steroids were making me hungry like crazy, so I was terrible. They did a scope for both ends, since the doctor wanted to be thorough. He also took a routine sample biopsy of my upper GI. The whole procedure didn't take but about 20-30 minutes and I was discharged within the hour.
According to the doctor, things are looking fine. No tears, polyps, inflammation or anything that he could see. He just believes the Ipi was flaring up my colon and causing me to have diarrhea. But no signs of anything major, such as colitis.
So the big thing now is to see what happens next week. Since the test results were positive, we have no reason to think they won't continue with the treatment as planned so we expect my third infusion to come next week. They may keep me on a dosage of steroids to combat any potential future inflammation, which I would welcome fully.
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