Stoopid genetic makeup!
So i got a call from Chris Fountain at the Clinical Trials department at Providence Medical Center. They got very good, measurable scans of my tummy tumors, but I don't have the antigen required for the clinical trial I was scheduled to go into. Bah!
Chris is sending me via email more information about some other trials. More reading dry, bland medical information. We will likely make a decision for our next step tonight.
More to come later this week...
Cheryl
Tuesday, February 26, 2008
Thursday, February 21, 2008
The long awaited, much promised longer update - now with glavin!
Yeah, I know, we promised a longer post earlier. We've been busy. And lazy. "Blazy?" Call the Webster people, we might have new word here.
So, two weeks ago, Cheryl went in for her endoscopy, and as previously mentioned, the photos that came back definitely won't go in the scrapbook. I can see keeping sonograms, but these were just a big bowl of ugly, including one very large mass towards the entrance to the duodenum, which, in the spirit of belittling the cancer (and just being a good Simpsons reference), we now call "Bitey."
Stupid Bitey. We hate Bitey.
When we saw Dr. Crocenzi the next week, he didn't have the results from the PET scan (we had to get it done the day before in Portland, as for some inexplicable reason, Blue Cross will no longer cover this procedure as done by Gritman Hospital in Moscow; insert your own Idaho joke here), but we did bring along the tummy pics, and it was rather apparent that the IL-2 treatment wasn't doing it's job anymore. This, apparently, is not that uncommon with the IL-2 treatment; it'll work for a while, but then the tumors come back. Still, we did see a positive result for a while, and this bodes well for future treatments.
Dr. Crocenzi outlined three courses of treatment for us:
Plan B: This is a clinical trial that involves filtering out all of Cheryl's white blood cells in a process called leukophorysis, then re-injecting them later with a drug that has a genetic marker attached which should attack the surface of the cancer cells - in essence, it's a "reboot" of the immune system. However, this only works in people who have a specific positive antigen in their system; like blood types, you're either negative or positive, and it's pretty much a coin flip if you have it or not.
Plan C: This is another clinical trial that involves giving Cheryl a drug called imipimab or something oddly pronounced like that, which is a form of stem cell therapy. Yet another reason to vote Democrat this fall, if'n you ask me. Due to the nature of these clinical trials, if Cheryl undergoes Plan C, she couldn't do B if C doesn't work, but if she undergoes B first, she'd still be eligible for C if B doesn't work.
Confused yet?
Plan D: This is standard chemotherapy, which involves a few drugs that might be mildly effective at slowing the growth of tumors, but shows little promise as a cure. Along with IL-2, this is the only FDA approved course of treatment for this type of cancer. To us, this really isn't an option at this time.
The bright side of clinical trials is that this is really cutting edge stuff that's shown enough promise in small mammals that they're testing it on large mammals (that's us). The down side is that, well, even if you see dramatic short-term gains, they have no idea as to what kind of long-term effect you'll see. Some of these treatments are less than a year old, so there's no data yet on how patients are five, ten, twenty years down the road.
Nonetheless, we'll happily be guinea pigs at this point in time.
So, we're hoping that Cheryl has the positive antigen to undergo Plan B, if not, then Plan C it is. Chris Fountain, the nurse who is charge of organizing much of the clinical trials at the Oregon Cancer Clinic, was very excited about some of the future trials coming down the pipe, including the hyper-oxygenation treatment that some INB readers pointed out to us a few months ago - I thought it'd be years before it made it to the U.S., but apprarently it's only months away. So, as previously mentioned, in a few months we'll have options E, F, G and maybe H available to us.
We did give Chris a hard time when he said, "This is really an exciting time to be a cancer patient," to which Cheryl replied, "No it's not!" We kid, we kid. Sorry Chris! He is very excited, though, about the various treatments coming down the pipe.
After our meeting with Dr. Crocenzi, we were in a reasonably good mood, since we'd had the weekend to steel ourselves for bad news. We spent some money at Powell's, then visited Cheryl's folks for a while, drove over to spend Valentine's Day with my folks in Bend, then had a weekend to ourselves at Baker City. I had much fun skiing at Anthony Lakes, Cheryl, not so much - a combination of lack of conditioning and not skiing much over the past three years made for a not-fun time for her (next time, she decided, she'll get some remedial lessons to relearn how to make right turns). Sweet merciful God, though, I am sick of long-distance driving these days.
Cheryl had to fly back to Portland last Tuesday to get another CT scan; apparently, they weren't able to get a good measurement on her tumors the last go around, and they needed the radiologist present to be sure they got exactly what they needed. And a collective "blergh" was issued forth. So she hasn't been feeling too good the past few days, probably a combination of travel stress and all that ooky radioactive iodine they pumped into her. So ooky, in fact, she could barely play with our new Wii.
That's the news from INB HQ. We will hopefully hear back from the OCC regarding what our next course of action is in the next few days, and we'll keep you updated when that happens.
Dave
So, two weeks ago, Cheryl went in for her endoscopy, and as previously mentioned, the photos that came back definitely won't go in the scrapbook. I can see keeping sonograms, but these were just a big bowl of ugly, including one very large mass towards the entrance to the duodenum, which, in the spirit of belittling the cancer (and just being a good Simpsons reference), we now call "Bitey."
Stupid Bitey. We hate Bitey.
When we saw Dr. Crocenzi the next week, he didn't have the results from the PET scan (we had to get it done the day before in Portland, as for some inexplicable reason, Blue Cross will no longer cover this procedure as done by Gritman Hospital in Moscow; insert your own Idaho joke here), but we did bring along the tummy pics, and it was rather apparent that the IL-2 treatment wasn't doing it's job anymore. This, apparently, is not that uncommon with the IL-2 treatment; it'll work for a while, but then the tumors come back. Still, we did see a positive result for a while, and this bodes well for future treatments.
Dr. Crocenzi outlined three courses of treatment for us:
Plan B: This is a clinical trial that involves filtering out all of Cheryl's white blood cells in a process called leukophorysis, then re-injecting them later with a drug that has a genetic marker attached which should attack the surface of the cancer cells - in essence, it's a "reboot" of the immune system. However, this only works in people who have a specific positive antigen in their system; like blood types, you're either negative or positive, and it's pretty much a coin flip if you have it or not.
Plan C: This is another clinical trial that involves giving Cheryl a drug called imipimab or something oddly pronounced like that, which is a form of stem cell therapy. Yet another reason to vote Democrat this fall, if'n you ask me. Due to the nature of these clinical trials, if Cheryl undergoes Plan C, she couldn't do B if C doesn't work, but if she undergoes B first, she'd still be eligible for C if B doesn't work.
Confused yet?
Plan D: This is standard chemotherapy, which involves a few drugs that might be mildly effective at slowing the growth of tumors, but shows little promise as a cure. Along with IL-2, this is the only FDA approved course of treatment for this type of cancer. To us, this really isn't an option at this time.
The bright side of clinical trials is that this is really cutting edge stuff that's shown enough promise in small mammals that they're testing it on large mammals (that's us). The down side is that, well, even if you see dramatic short-term gains, they have no idea as to what kind of long-term effect you'll see. Some of these treatments are less than a year old, so there's no data yet on how patients are five, ten, twenty years down the road.
Nonetheless, we'll happily be guinea pigs at this point in time.
So, we're hoping that Cheryl has the positive antigen to undergo Plan B, if not, then Plan C it is. Chris Fountain, the nurse who is charge of organizing much of the clinical trials at the Oregon Cancer Clinic, was very excited about some of the future trials coming down the pipe, including the hyper-oxygenation treatment that some INB readers pointed out to us a few months ago - I thought it'd be years before it made it to the U.S., but apprarently it's only months away. So, as previously mentioned, in a few months we'll have options E, F, G and maybe H available to us.
We did give Chris a hard time when he said, "This is really an exciting time to be a cancer patient," to which Cheryl replied, "No it's not!" We kid, we kid. Sorry Chris! He is very excited, though, about the various treatments coming down the pipe.
After our meeting with Dr. Crocenzi, we were in a reasonably good mood, since we'd had the weekend to steel ourselves for bad news. We spent some money at Powell's, then visited Cheryl's folks for a while, drove over to spend Valentine's Day with my folks in Bend, then had a weekend to ourselves at Baker City. I had much fun skiing at Anthony Lakes, Cheryl, not so much - a combination of lack of conditioning and not skiing much over the past three years made for a not-fun time for her (next time, she decided, she'll get some remedial lessons to relearn how to make right turns). Sweet merciful God, though, I am sick of long-distance driving these days.
Cheryl had to fly back to Portland last Tuesday to get another CT scan; apparently, they weren't able to get a good measurement on her tumors the last go around, and they needed the radiologist present to be sure they got exactly what they needed. And a collective "blergh" was issued forth. So she hasn't been feeling too good the past few days, probably a combination of travel stress and all that ooky radioactive iodine they pumped into her. So ooky, in fact, she could barely play with our new Wii.
That's the news from INB HQ. We will hopefully hear back from the OCC regarding what our next course of action is in the next few days, and we'll keep you updated when that happens.
Dave
Thursday, February 14, 2008
A brief post in lieu of a longer update
Sorry for not updating sooner, but its been a busy week and our internet access has been irregular at best.
The news could be better. Cheryl hadn't been feeling too good the past few weeks, so we weren't surprised when the endoscopy on Friday showed that the tumors in her stomach had grown and expanded. Bummed out, yes, but not surprised. This is not uncommon in patients undergoing IL-2 treatment.
Fortunately, we have Plan B, C, and D to fall back on. There are two clinical trials we are trying to get Cheryl into, the most promising of which is one that involves removing all the white blood cells from her system, then reinjecting them into her body with an antigen-specific drug designed to attack the cancer - essentially, it's rebooting her immune system.
However, Cheryl needs to have a specific positive antibody in her system, and it's 50/50 that she has it. If it's positive, we proceed, if it's negative, we go to Plan C.
In addition, there's a number of new treatments that are in the pipe, so within a few months we'll have Plans E, F, G and H to fall back on.
Cheryl and I will have a more detailed post up in a few days. Until then, think positive (and we mean that in more ways than one).
Dave
The news could be better. Cheryl hadn't been feeling too good the past few weeks, so we weren't surprised when the endoscopy on Friday showed that the tumors in her stomach had grown and expanded. Bummed out, yes, but not surprised. This is not uncommon in patients undergoing IL-2 treatment.
Fortunately, we have Plan B, C, and D to fall back on. There are two clinical trials we are trying to get Cheryl into, the most promising of which is one that involves removing all the white blood cells from her system, then reinjecting them into her body with an antigen-specific drug designed to attack the cancer - essentially, it's rebooting her immune system.
However, Cheryl needs to have a specific positive antibody in her system, and it's 50/50 that she has it. If it's positive, we proceed, if it's negative, we go to Plan C.
In addition, there's a number of new treatments that are in the pipe, so within a few months we'll have Plans E, F, G and H to fall back on.
Cheryl and I will have a more detailed post up in a few days. Until then, think positive (and we mean that in more ways than one).
Dave
Tuesday, February 5, 2008
Raucous at the caucus
Being Oregonians, Cheryl and I have participated in many primaries and general elections, but this was our first caucus, and we were weirdly excited about it. Part of it was that we'd never participated in one, and part of it was, hey, something new to do on Tuesday night besides the exciting CW lineup.
Let's just say I was stunned. In a rural county in north-central Idaho (yes, the University of Idaho is here, but this is still podunk country), on a cold, snowy night, there were - I kid you not - hundreds of people at the caucus site.
I didn't know there were that many Democrats in Idaho, let along Latah County.
Cheryl and I are both Obama supporters, and we were not alone. Pretty much everyone there was wearing Obama stickers - the Obama campaign and U of I Democrats did a stellar job of getting out the vote (and, of course, they had snacks - I'll vote for anyone who'll give me free food).
There was a small Clinton contingent of roughly 30 people - not a one younger than forty by my eyes - a handful of Edwards loyalists and a few "uncommitted" folks hoping Gravel or Kucinich might show up just for the hell of it. And they had no snacks! What did I just say about food getting my vote?
Sadly, we had to leave before all the official voting occurred, as Cheryl got a little overheated and queasy in the literally-packed-to-the-gills caucus room (fortunately, we literally live a block away from the caucus site, so it was a short walk home). But, all in all, it was a fun time, and, if you're an Obama supporter, you can be heartened to think that he carried a tiny rural county in the middle of nowhere, and the entire state of Idaho (which, not so long ago, was better known as America's biggest exporter of neo-Nazis) went for Obama 85/15...well, maybe there's hope for us yet.
Dave
Let's just say I was stunned. In a rural county in north-central Idaho (yes, the University of Idaho is here, but this is still podunk country), on a cold, snowy night, there were - I kid you not - hundreds of people at the caucus site.
I didn't know there were that many Democrats in Idaho, let along Latah County.
Cheryl and I are both Obama supporters, and we were not alone. Pretty much everyone there was wearing Obama stickers - the Obama campaign and U of I Democrats did a stellar job of getting out the vote (and, of course, they had snacks - I'll vote for anyone who'll give me free food).
There was a small Clinton contingent of roughly 30 people - not a one younger than forty by my eyes - a handful of Edwards loyalists and a few "uncommitted" folks hoping Gravel or Kucinich might show up just for the hell of it. And they had no snacks! What did I just say about food getting my vote?
Sadly, we had to leave before all the official voting occurred, as Cheryl got a little overheated and queasy in the literally-packed-to-the-gills caucus room (fortunately, we literally live a block away from the caucus site, so it was a short walk home). But, all in all, it was a fun time, and, if you're an Obama supporter, you can be heartened to think that he carried a tiny rural county in the middle of nowhere, and the entire state of Idaho (which, not so long ago, was better known as America's biggest exporter of neo-Nazis) went for Obama 85/15...well, maybe there's hope for us yet.
Dave
Oh Boy! Caucus!
Hi All
Dave and I are looking forward to tonight. Since we are both Oregon-born and -bred, we have always voted in a primary. Idaho, however, has a caucus on Super Tuesday, which is today! So we are planning on going over to the Latah County Fairground (outside our back door!) and go to the Democratic Caucus. Oh boy! Neither of us are sure why, but we're really excited about going to the caucus! I'll give you an update on what we noted after we get back tonight.
Things are going well. Yesterday I had a preliminary appointment prior to an upper endoscopy (camera down the throat to look at my stomach) -- oh boy. I can't eat starting at midnight Thursday, and I can only have a low carb diet on friday prior to my PET/CT scan on Saturday. Hungry makes Cheryl Grumpy! She-Hulk smash! I guess Dave and I will be going for a good lunch on Saturday! Gyros?
OK. Back to thesis work. Took me an hour to figure out how to use our scanner. SIGH. You'd think that HP would make their 3-in-1 printer/scanner/copier more user-friendly, but no! ;)
Cheryl
Dave and I are looking forward to tonight. Since we are both Oregon-born and -bred, we have always voted in a primary. Idaho, however, has a caucus on Super Tuesday, which is today! So we are planning on going over to the Latah County Fairground (outside our back door!) and go to the Democratic Caucus. Oh boy! Neither of us are sure why, but we're really excited about going to the caucus! I'll give you an update on what we noted after we get back tonight.
Things are going well. Yesterday I had a preliminary appointment prior to an upper endoscopy (camera down the throat to look at my stomach) -- oh boy. I can't eat starting at midnight Thursday, and I can only have a low carb diet on friday prior to my PET/CT scan on Saturday. Hungry makes Cheryl Grumpy! She-Hulk smash! I guess Dave and I will be going for a good lunch on Saturday! Gyros?
OK. Back to thesis work. Took me an hour to figure out how to use our scanner. SIGH. You'd think that HP would make their 3-in-1 printer/scanner/copier more user-friendly, but no! ;)
Cheryl
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