Ok, so I promise that this blog will migrate away from my health-related, depressing posts very, very soon...
I read this article in the NY Times yesterday. Apparently the FDA is investigating if the drug I take for my Crohn's (and other drugs in that class) causes a higher rate of cancer among younger patients.
I'd never given much thought as to what caused my cancer. In general, the medical community doesn't know what causes it. There are a couple of lifestyle factors that they believe can contribute (being overweight and a sedentary lifestyle), but other than that they have no idea.
I can't say that I didn't give a little thought to my Remicade possibly being a factor. But it's the only thing I've found that keeps my fistulas in check.
Anyway, I'm not sure how I feel about this. What's done is done. Maybe it was a factor, maybe not. But unless something else comes along, I'll be on this drug for a long time yet. I guess it's time to start aggressively searching for alternative treatments.
23 October, 2008
20 October, 2008
Boring...
I feel bad because I haven't put anything up for a while. Unfortunately there hasn't been anything too interesting that's happened over the last couple of weeks. Let's see what un-interesting things I can dig up... (hey, I'm sitting at MD Anderson and it's about 2 hours until my next test, so I need *something* to do)
- I'm feeling pretty much back to normal. I'd say 90% or so. Now I just need a way to deal with all the fatigue I've had for the past couple of years. I think I've got a possible solution, but I'll wait to blog about that until I can confirm it.
- I've been spending a lot more time with friends here in Houston. It's one of the things that I promised myself that I'd do. It's been cool, but makes for a heck of a schedule some days.
- I've got at least 4 trips (possibly 5) scheduled before the end of the year and not a single one of them are really planned yet. I need to get on that. But that also means if I haven't said something, I probably won't be by to see you this year. Sorry folks. (or "congratulations"--depending on how you see it...)
- I learned that if you don't play Rock Band for a long time, your hand hurts like heck when you try.
- I finally got the breakdown from my insurance company, so I can start the house repairs. One of the cool things is that they are paying to have my house completely re-roofed. I only lost 1/30th of the shingles, but they are paying to have the whole thing redone. W00t! (that makes for a good selling point)
Yeah, that's not much. Like I said, the fatigue really sucks and slows-down any progress I'd like to be making during the week.
But, like I've said before, if that's my biggest gripe then life just can't be too bad.
- I'm feeling pretty much back to normal. I'd say 90% or so. Now I just need a way to deal with all the fatigue I've had for the past couple of years. I think I've got a possible solution, but I'll wait to blog about that until I can confirm it.
- I've been spending a lot more time with friends here in Houston. It's one of the things that I promised myself that I'd do. It's been cool, but makes for a heck of a schedule some days.
- I've got at least 4 trips (possibly 5) scheduled before the end of the year and not a single one of them are really planned yet. I need to get on that. But that also means if I haven't said something, I probably won't be by to see you this year. Sorry folks. (or "congratulations"--depending on how you see it...)
- I learned that if you don't play Rock Band for a long time, your hand hurts like heck when you try.
- I finally got the breakdown from my insurance company, so I can start the house repairs. One of the cool things is that they are paying to have my house completely re-roofed. I only lost 1/30th of the shingles, but they are paying to have the whole thing redone. W00t! (that makes for a good selling point)
Yeah, that's not much. Like I said, the fatigue really sucks and slows-down any progress I'd like to be making during the week.
But, like I've said before, if that's my biggest gripe then life just can't be too bad.
05 October, 2008
Quick Weekend Update
Not much going on this weekend. I still need to get a lot of my strength and endurance back. But I can't say that I've reached too hard for that goal over the last couple of days--I've spent quite a bit of it on the couch catching up on the TV and movies I've missed over the last month or so.
Not Your Typical Halloween Basket
It's nice to finally be able to put this basket 'o meds away. This was my side-effect-management stash.
Getting in the Spirit of the Holidays
Friday night, I did step out with some friends for a cool little thing put on by our local NPR radio station.
Sitting on an open-air theater with the skyscrapers of downtown Houston as a backdrop, they showed the silent film 'Nosferatu' with live music accompaniment by an Austin band. It was definitely cool.
Not Your Typical Halloween Basket
It's nice to finally be able to put this basket 'o meds away. This was my side-effect-management stash.
Getting in the Spirit of the Holidays
Friday night, I did step out with some friends for a cool little thing put on by our local NPR radio station.
Sitting on an open-air theater with the skyscrapers of downtown Houston as a backdrop, they showed the silent film 'Nosferatu' with live music accompaniment by an Austin band. It was definitely cool.
01 October, 2008
Probably. Maybe. We mostly think so.
Ok, so here's the slightly more detailed version of the previous post...
They *think* I'm cancer-free. Up until this point, I've been a textbook case of testicular cancer. My blood work, treatment and recovery has been exactly as the doctors have learned to expect after successfully treating thousands of cases of my cancer.
Where I diverged from being a typical case is my AFP count. If you remember, that's the protein they use to diagnose how much cancer is in my system.
In a typical adult, there is 0 to 5 ng/mL of AFP found. When I started all of this, my count was just under 1,000. But ever since round 2 of chemo, it's been floating around 10 ng/mL.
Normally this indicates that there is still some active cancer left. However, since that number hasn't moved during the last two rounds of chemo and the biopsy from surgery showed that the thing they removed from my lymph node was a mature teratoma (most likely benign), my oncologist believes that the slightly elevated AFP is normal for me. (much like someone who naturally has low blood pressure or has a normal internal body temperature lower than 98.6)
There is also a slight chance that my Crohn's is causing the extra AFP to be produced. It's been shown that Colitis (a very similar condition) can cause this.
So, the end result is this: they are pretty sure I'm cured. But the AFP number means that I don't have a 100% diagnosis. They will be re-testing my blood and giving me CT scans every few months for the next couple of years to make sure. (which was the plan in any case) If the AFP continues not to rise, we'll know that's normal for me.
They *think* I'm cancer-free. Up until this point, I've been a textbook case of testicular cancer. My blood work, treatment and recovery has been exactly as the doctors have learned to expect after successfully treating thousands of cases of my cancer.
Where I diverged from being a typical case is my AFP count. If you remember, that's the protein they use to diagnose how much cancer is in my system.
In a typical adult, there is 0 to 5 ng/mL of AFP found. When I started all of this, my count was just under 1,000. But ever since round 2 of chemo, it's been floating around 10 ng/mL.
Normally this indicates that there is still some active cancer left. However, since that number hasn't moved during the last two rounds of chemo and the biopsy from surgery showed that the thing they removed from my lymph node was a mature teratoma (most likely benign), my oncologist believes that the slightly elevated AFP is normal for me. (much like someone who naturally has low blood pressure or has a normal internal body temperature lower than 98.6)
There is also a slight chance that my Crohn's is causing the extra AFP to be produced. It's been shown that Colitis (a very similar condition) can cause this.
So, the end result is this: they are pretty sure I'm cured. But the AFP number means that I don't have a 100% diagnosis. They will be re-testing my blood and giving me CT scans every few months for the next couple of years to make sure. (which was the plan in any case) If the AFP continues not to rise, we'll know that's normal for me.
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