I managed to schedule my Thyrogen administration just before Christmas -- having already met my health insurance deductible this year, it was rather important to do it now rather than in January.
First shot (right arm) was on Thursday, second shot (left arm) was on Friday. Fortunately this time I have only a tiny bit of soreness around the injection site. The preliminary bloodwork drawn on Thursday was taken from my hand, and that hurts a lot worse than where they stuck me with the shots. The problem I had a before, with a numb, painful arm, are nowhere in evidence.
I go for my second blood draw tomorrow, and that's the important one, the one that will tell what my stimulated Thyroglobulin (Tg) production is. They'll be sending it out to Carole Spencer's lab, so it will take a while for the results to come in.
That's a source of frustration, sure, but there's no reason to expect much of an uptick. Last time it went up to 1.1, I think, scarcely worth mentioning. Here's hoping for the same or lower. I've rather gotten into the habit, these last few years, of being relatively healthy. I'd like to stay that way.
Showing posts with label Thyrogen. Show all posts
Showing posts with label Thyrogen. Show all posts
Monday, December 21, 2009
Sunday, June 05, 2005
brief notes on the RAI experience
100 mCi is easier to deal with than 200 mCi.
I am climbing the walls. There is a huge difference between being post-op and hypo, on meds withdrawal for weeks, and being on Thyrogen.
Thyrogen is mondo expensive, but worth. every. cent.
Dr. S recommended 600 mg ibuprofen every 8 hours for RAI mumps; it works. Mostly.
My taste buds are shot. I'm not sure if it's from eating Altoids sours all day as directed, or from the RAI. Could be some of both. I feel like it was burned last week and is just now healing. There's no pain but my sense of taste seems to have evaporated. Here's hoping it comes back.
Heat packs are great on the swollen salivaries. I'm sure I looked ridiculous, but I took my bed buddy, a tube filled with rice with handles sewn onto each end, and nuked it for 2 minutes. Then I twisted the middle so that the two ends became heating pads joined by the twisted part. The twist goes under the chin, and the two heat packs lie right along all the salivaries in the neck and face -- lovely. You do have to hold the handles up, and I'm sure it looks ridiculous, but it really worked. I suppose you could tie them, but I don't like to leave it on for that long, and holding the two handles together wasn't that difficult.
Can't wait to get out tomorrow afternoon!
I am climbing the walls. There is a huge difference between being post-op and hypo, on meds withdrawal for weeks, and being on Thyrogen.
Thyrogen is mondo expensive, but worth. every. cent.
Dr. S recommended 600 mg ibuprofen every 8 hours for RAI mumps; it works. Mostly.
My taste buds are shot. I'm not sure if it's from eating Altoids sours all day as directed, or from the RAI. Could be some of both. I feel like it was burned last week and is just now healing. There's no pain but my sense of taste seems to have evaporated. Here's hoping it comes back.
Heat packs are great on the swollen salivaries. I'm sure I looked ridiculous, but I took my bed buddy, a tube filled with rice with handles sewn onto each end, and nuked it for 2 minutes. Then I twisted the middle so that the two ends became heating pads joined by the twisted part. The twist goes under the chin, and the two heat packs lie right along all the salivaries in the neck and face -- lovely. You do have to hold the handles up, and I'm sure it looks ridiculous, but it really worked. I suppose you could tie them, but I don't like to leave it on for that long, and holding the two handles together wasn't that difficult.
Can't wait to get out tomorrow afternoon!
Friday, June 03, 2005
radiation vacation, round 2
The scan was negative.
Negative.
Negative.
14 hours later, and I still can not believe it. That was so cool.
So, the scan stuff was done at like 9:45AM, but we needed my bloodwork from yesterday to figure out if there was anything at all to be done, and that was supposed to come over at 10:30, 11 -- but didn't come over until 12:30 or so.
Damn... Tg, which had been dropping steadily when my TSH was suppressed, and had last been measured at 1.9 or something like that, quadrupled under the Thyrogen stimulation to 8.8.
Damn.
The NucMed doctor, Dr. S, conferred with Dr. R at my endo's office, finally getting someone to speak with him at 2:30 after putting in for a treatment consultation call before 1. It was imperative the decision to treat be made asap, as the clock was ticking on my Thyrogen's viability. Dr. M never did call us, so Dr. R covered for her. (I'm thinking Dr. M better call me on Monday to check in with me or I will be a bit ticked.)
Dr. S's treatment plan: 100 mCi RAI, immediately.
So find myself being hit with the RAI hammer after all... it figures. But I am more than OK with it. I saw the scans and saw that there was NO uptake anywhere there had been uptake before. It was amazing. It was the best news: RAI works on my cancer. I am thrilled.
However, that Tg number means that there are clusters of cells around still producing Tg, even though they were too small to show up on the scan. We need to clean them out. This dosage of RAI should do that. There is a very good chance that I won't ever need treatment for this disease again.
Summer's official start is Monday, June 6, at 4:15PM, and three weeks from tomorrow, we're heading East!
Negative.
Negative.
14 hours later, and I still can not believe it. That was so cool.
So, the scan stuff was done at like 9:45AM, but we needed my bloodwork from yesterday to figure out if there was anything at all to be done, and that was supposed to come over at 10:30, 11 -- but didn't come over until 12:30 or so.
Damn... Tg, which had been dropping steadily when my TSH was suppressed, and had last been measured at 1.9 or something like that, quadrupled under the Thyrogen stimulation to 8.8.
Damn.
The NucMed doctor, Dr. S, conferred with Dr. R at my endo's office, finally getting someone to speak with him at 2:30 after putting in for a treatment consultation call before 1. It was imperative the decision to treat be made asap, as the clock was ticking on my Thyrogen's viability. Dr. M never did call us, so Dr. R covered for her. (I'm thinking Dr. M better call me on Monday to check in with me or I will be a bit ticked.)
Dr. S's treatment plan: 100 mCi RAI, immediately.
So find myself being hit with the RAI hammer after all... it figures. But I am more than OK with it. I saw the scans and saw that there was NO uptake anywhere there had been uptake before. It was amazing. It was the best news: RAI works on my cancer. I am thrilled.
However, that Tg number means that there are clusters of cells around still producing Tg, even though they were too small to show up on the scan. We need to clean them out. This dosage of RAI should do that. There is a very good chance that I won't ever need treatment for this disease again.
Summer's official start is Monday, June 6, at 4:15PM, and three weeks from tomorrow, we're heading East!
Tuesday, May 31, 2005
100 miles, 6 stops, 3 sticks, one sore arm
Today: got up, took a shower, didn't have time to do my hair so I just let it dry. (It now resembles a tumbleweed.)
Took DS2 with me up to Phoenix, which was great because I could use the HOV lane and did not get stuck in traffic. At the endo's office, I got stuck 3 times: twice for the blood draw, and once with the Thyrogen shot. DS2 was great during the whole thing. I told him what was going to happen, and he said, "Oh! I'll just wait out here, then," and he sat on the floor in the hallway, just by the door. He could hear my voice but he didn't have to see anything. The doctor's office has some cool photos up that he spent his time looking at. It was only a few minutes, after all. The shot didn't hurt at the time, but man, does it hurt now. "Your arm may be sore," the tech said kindly. I just brushed it off, how bad could it be? Well, bad enough that there's about a 3 or 4 inch area around the injection site that's significantly hotter than the rest of my arm. The whole left arm, shoulder, and left side of my neck are very achey. Fortunately that didn't kick in until later. I should go look up whether ibuprofen would be OK for this pain. I can't think why it wouldn't be, but I won't take anything without checking it out first.
Got home and found I had inadvertently ignited yet another fire storm over on the forum; more about that in a different post. It's one thing to provoke an argument and then sit back and enjoy the fireworks -- and this not something I ever do on purpose, but sometimes it is funny to see how people react. But last night's post wasn't meant to be incendiary in the least, and yet somehow it turned out to be. So that sucked, and I flopped around trying to deal with that until it was time to go get DD.
Went and picked up DD at school, and then traipsed all of us to Trader Joe's because we had no bread or milk. Stopped at BK on the way home for the kiddos, but I had leftover beef stew, finished it off (sigh).
Came home, flopped around the forum hooha some more until it was time to go to the g/e doctor. Got there on time (1:30), but we didn't get called back until after 2PM, and then we had an inordinate wait in the room before the doctor came in. Then I had to go through my thyroid cancer history with him, and he actually had some suggestions for my rapid transit problem and wants to see me again in a month.
We left the doctor's and hit the road to pick up DS1, and got there just as the kids were being released. I had called and warned them I might be late so DS1 wouldn't worry, but I was glad I wasn't. I hate it when I'm late, even if they're expecting it.
Came home, tried to feed the kids a snack, but they were too excited (DD) or terrified (DS2) about their swimming lessons to want to eat much -- not to mention recovering from that stomach virus. Looked up the directions to the new swimming facility. Got everyone into their suits, and towels and goggles lined up, and got to the new swim place which was a bit crazy -- today was their first day in the new facility! All 3 kids did very well in their lessons, even though DS2 cried a lot. He cries, but he still does everything the teacher asks him to, it's pretty funny. On the way home he said, "I like that pool." We were all laughing, because of how cranky he was while he was in it! Oh, well. I think (hope) tomorrow will go more easily.
We got home a little before 6 but we weren't exactly in a hurry. Tomorrow we'll have to hustle because DD has to get to her kindergarden graduation ceremony as close to 5:30 as possible. At least tomorrow I won't have to buy DD a bathing cap, as I did today -- I knew I would have to, but I foolishly didn't think about it until it was time for her lesson. She's all set now. It was great to see how happy they all were.
Happy, and now exhausted. They were all drooping over their plates at dinner. We'll have to get them to bed asap!
Tomorrow I'm hoping they'll inject the other arm, unless the left one feels a lot better I don't want them sticking it again. As always, I'll just have to wait and see how it goes.
Took DS2 with me up to Phoenix, which was great because I could use the HOV lane and did not get stuck in traffic. At the endo's office, I got stuck 3 times: twice for the blood draw, and once with the Thyrogen shot. DS2 was great during the whole thing. I told him what was going to happen, and he said, "Oh! I'll just wait out here, then," and he sat on the floor in the hallway, just by the door. He could hear my voice but he didn't have to see anything. The doctor's office has some cool photos up that he spent his time looking at. It was only a few minutes, after all. The shot didn't hurt at the time, but man, does it hurt now. "Your arm may be sore," the tech said kindly. I just brushed it off, how bad could it be? Well, bad enough that there's about a 3 or 4 inch area around the injection site that's significantly hotter than the rest of my arm. The whole left arm, shoulder, and left side of my neck are very achey. Fortunately that didn't kick in until later. I should go look up whether ibuprofen would be OK for this pain. I can't think why it wouldn't be, but I won't take anything without checking it out first.
Got home and found I had inadvertently ignited yet another fire storm over on the forum; more about that in a different post. It's one thing to provoke an argument and then sit back and enjoy the fireworks -- and this not something I ever do on purpose, but sometimes it is funny to see how people react. But last night's post wasn't meant to be incendiary in the least, and yet somehow it turned out to be. So that sucked, and I flopped around trying to deal with that until it was time to go get DD.
Went and picked up DD at school, and then traipsed all of us to Trader Joe's because we had no bread or milk. Stopped at BK on the way home for the kiddos, but I had leftover beef stew, finished it off (sigh).
Came home, flopped around the forum hooha some more until it was time to go to the g/e doctor. Got there on time (1:30), but we didn't get called back until after 2PM, and then we had an inordinate wait in the room before the doctor came in. Then I had to go through my thyroid cancer history with him, and he actually had some suggestions for my rapid transit problem and wants to see me again in a month.
We left the doctor's and hit the road to pick up DS1, and got there just as the kids were being released. I had called and warned them I might be late so DS1 wouldn't worry, but I was glad I wasn't. I hate it when I'm late, even if they're expecting it.
Came home, tried to feed the kids a snack, but they were too excited (DD) or terrified (DS2) about their swimming lessons to want to eat much -- not to mention recovering from that stomach virus. Looked up the directions to the new swimming facility. Got everyone into their suits, and towels and goggles lined up, and got to the new swim place which was a bit crazy -- today was their first day in the new facility! All 3 kids did very well in their lessons, even though DS2 cried a lot. He cries, but he still does everything the teacher asks him to, it's pretty funny. On the way home he said, "I like that pool." We were all laughing, because of how cranky he was while he was in it! Oh, well. I think (hope) tomorrow will go more easily.
We got home a little before 6 but we weren't exactly in a hurry. Tomorrow we'll have to hustle because DD has to get to her kindergarden graduation ceremony as close to 5:30 as possible. At least tomorrow I won't have to buy DD a bathing cap, as I did today -- I knew I would have to, but I foolishly didn't think about it until it was time for her lesson. She's all set now. It was great to see how happy they all were.
Happy, and now exhausted. They were all drooping over their plates at dinner. We'll have to get them to bed asap!
Tomorrow I'm hoping they'll inject the other arm, unless the left one feels a lot better I don't want them sticking it again. As always, I'll just have to wait and see how it goes.
Thursday, May 26, 2005
when all you have is a hammer...
...everything looks like a nail.
I understand that human nature dictates that we always think that our professional solution is the right one. It doesn't surprise me that my surgeon wants to operate, or that my NucMed doctor wants to give me another round of RAI.
But I have to weigh this factor in deciding what course of treatment I'll follow. And since I'm already in "off label" territory as far as Thyrogen treatment is concerned, I'm not exactly sure where I'm going to end up.
Today I called the NucMed department and got my schedule for my injections, tracer dose, and scan next week. The plan is to get injections on Tuesday and Wednesday, tracer dose Thursday, then the scan Friday.
That all sounds OK, but then the scheduler continued: We'll also treat you on Friday if the scan is positive.
Wait just a minute, there, Missy! What do you mean? First of all, treatment means going into isolation for at least 3 days, and it's not something I can just jump into.
Second, even if the scan is positive, will another round of RAI now be the best way to treat it? In my discussions with my endo, she talked about getting the WBS and then following up with CT or other scans to get good localizations on whatever is there, and then determining a course of treatment.
However, the Thyrogen is short-acting, and if I don't get treated Friday, I will have to go hypo (off thyroid meds for at least 4 weeks) before I could be treated, or I could try to request another round of Thyrogen but it's likely that the insurance company would deny it.
There's also the fact that Thyrogen isn't even commonly used for people who have not yet had a "clean" (that is, cancer-free) scan, and this is my first follow-up and we're about 100% sure that this scan is not going to be clean. This the "off label" usage I mentioned above.
But actually treating me while on Thyrogen stim is even further off-label! The Thyrogen Patient Information Kit (pdf) even says, Your thyroid hormone therapy must also be stopped if your tests show that you need 131I treatment.
I'm sure there are studies out there showing that it can be effective, and I know approval for this usage is something that the drug manufacturers are pursuing, but that doesn't mean I want to be a de facto uncompensated test case.
In addition, I'm not convinced that RAI is the way to go if it's in the lymph system, which is what my first WBS showed: multiple nodes in the neck and chest. At the time of that scan, I had just been nuked with 206 mCi of RAI, and the hope was that the radiation would clean out those nodes and anything else that might be lurking around. On examination at the beginning of May, my endo found at least 3 suspicious nodes in my neck.
Do I think I still have cancer in my nodes? You bet. Do I think the RAI can get it out of there? Honestly, I know there's a chance that it might, but I also know that historically, surgery (or ethanol ablation) is a much more effective method of eliminating cancerous nodes.
If I have RAI next Friday, they won't do anything else to me until the fall, at least 6 months out. On one hand, that could be a good thing as I could enjoy my summer. On the other hand, I have no confidence that further RAI is going to be all I need, so I'll just have surgery hanging over my head if they do the RAI now -- and the Thyrogen-stim RAI treatment still has me shaking my head. What to do, what to do?
No decisions can be made until after the scan, obviously. But I'm not going blindly into an off-label, less-than-effective treatment just because my NucMed doctor has a hammer and sees my thyca as a nail.
I understand that human nature dictates that we always think that our professional solution is the right one. It doesn't surprise me that my surgeon wants to operate, or that my NucMed doctor wants to give me another round of RAI.
But I have to weigh this factor in deciding what course of treatment I'll follow. And since I'm already in "off label" territory as far as Thyrogen treatment is concerned, I'm not exactly sure where I'm going to end up.
Today I called the NucMed department and got my schedule for my injections, tracer dose, and scan next week. The plan is to get injections on Tuesday and Wednesday, tracer dose Thursday, then the scan Friday.
That all sounds OK, but then the scheduler continued: We'll also treat you on Friday if the scan is positive.
Wait just a minute, there, Missy! What do you mean? First of all, treatment means going into isolation for at least 3 days, and it's not something I can just jump into.
Second, even if the scan is positive, will another round of RAI now be the best way to treat it? In my discussions with my endo, she talked about getting the WBS and then following up with CT or other scans to get good localizations on whatever is there, and then determining a course of treatment.
However, the Thyrogen is short-acting, and if I don't get treated Friday, I will have to go hypo (off thyroid meds for at least 4 weeks) before I could be treated, or I could try to request another round of Thyrogen but it's likely that the insurance company would deny it.
There's also the fact that Thyrogen isn't even commonly used for people who have not yet had a "clean" (that is, cancer-free) scan, and this is my first follow-up and we're about 100% sure that this scan is not going to be clean. This the "off label" usage I mentioned above.
But actually treating me while on Thyrogen stim is even further off-label! The Thyrogen Patient Information Kit (pdf) even says, Your thyroid hormone therapy must also be stopped if your tests show that you need 131I treatment.
I'm sure there are studies out there showing that it can be effective, and I know approval for this usage is something that the drug manufacturers are pursuing, but that doesn't mean I want to be a de facto uncompensated test case.
In addition, I'm not convinced that RAI is the way to go if it's in the lymph system, which is what my first WBS showed: multiple nodes in the neck and chest. At the time of that scan, I had just been nuked with 206 mCi of RAI, and the hope was that the radiation would clean out those nodes and anything else that might be lurking around. On examination at the beginning of May, my endo found at least 3 suspicious nodes in my neck.
Do I think I still have cancer in my nodes? You bet. Do I think the RAI can get it out of there? Honestly, I know there's a chance that it might, but I also know that historically, surgery (or ethanol ablation) is a much more effective method of eliminating cancerous nodes.
If I have RAI next Friday, they won't do anything else to me until the fall, at least 6 months out. On one hand, that could be a good thing as I could enjoy my summer. On the other hand, I have no confidence that further RAI is going to be all I need, so I'll just have surgery hanging over my head if they do the RAI now -- and the Thyrogen-stim RAI treatment still has me shaking my head. What to do, what to do?
No decisions can be made until after the scan, obviously. But I'm not going blindly into an off-label, less-than-effective treatment just because my NucMed doctor has a hammer and sees my thyca as a nail.
Wednesday, May 04, 2005
warning: re-entering Cancer Land
I saw my endo yesterday morning. I had a set of expectations that turned out to be completely wrong.
I expected that I would have to go off my T4 meds for 4 weeks, using extra T3 for 2 weeks, and then going with nothing for the last 2; then I'd get the Thyrogen shots and the scan.
Wrong! I get to stay on the T3 and the T4 the whole time. That's cool. I get to have the shots & scan as soon as they get the Thyrogen from their supplier. That sounds vaguely illegal, but it's not, although there is some run-around involved.
So, I had been thinking I had a good 2 weeks at least before I had to go back on the LID (low iodine diet). Wrong! That threw a wrench into our Mother's Day plans. Mimi's Cafe uses iodized salt, and that's where we were going Saturday evening. Flancer's, where we're planning lunch on Sunday doesn't, so that's still a go. YAY! I'm thinking I will give Claim Jumper a call and see what they say... I like it there.
Aside from these piddly concerns about eating and dinners out, my endo flatly stated that it is "likely" that I will need more treatment. Probably surgery, but also possibly RAI, in which case I would have to withdraw from meds for 4 weeks.
So, the plan is -- wait until the Thyrogen arrives, then get shots 3 consecutive days. Then get scanned. When it comes back positive, I'll probably go for another scan to localize the cancer so the surgeon can go in there and get it out. Ideally it will come back negative and I'll just take my summer vacation as we planned -- but the odds are vanishingly small that will happen. The dr felt a few little lumps in my neck she thought could be nodes.
I'm doing OK with this so far. In the back of my mind, I expected it. Doesn't mean I have to like it, but I will do what I have to do, just get through this and hope it will be the end of it.
One upshot of all this is that there will be a lot more cancer stuff around here in the forseeable future.
I have to say, I am thrilled to still be on my meds because in spite of the pending bad news, I still feel good, and I can still do things, and that is tremendously helpful.
I expected that I would have to go off my T4 meds for 4 weeks, using extra T3 for 2 weeks, and then going with nothing for the last 2; then I'd get the Thyrogen shots and the scan.
Wrong! I get to stay on the T3 and the T4 the whole time. That's cool. I get to have the shots & scan as soon as they get the Thyrogen from their supplier. That sounds vaguely illegal, but it's not, although there is some run-around involved.
So, I had been thinking I had a good 2 weeks at least before I had to go back on the LID (low iodine diet). Wrong! That threw a wrench into our Mother's Day plans. Mimi's Cafe uses iodized salt, and that's where we were going Saturday evening. Flancer's, where we're planning lunch on Sunday doesn't, so that's still a go. YAY! I'm thinking I will give Claim Jumper a call and see what they say... I like it there.
Aside from these piddly concerns about eating and dinners out, my endo flatly stated that it is "likely" that I will need more treatment. Probably surgery, but also possibly RAI, in which case I would have to withdraw from meds for 4 weeks.
So, the plan is -- wait until the Thyrogen arrives, then get shots 3 consecutive days. Then get scanned. When it comes back positive, I'll probably go for another scan to localize the cancer so the surgeon can go in there and get it out. Ideally it will come back negative and I'll just take my summer vacation as we planned -- but the odds are vanishingly small that will happen. The dr felt a few little lumps in my neck she thought could be nodes.
I'm doing OK with this so far. In the back of my mind, I expected it. Doesn't mean I have to like it, but I will do what I have to do, just get through this and hope it will be the end of it.
One upshot of all this is that there will be a lot more cancer stuff around here in the forseeable future.
I have to say, I am thrilled to still be on my meds because in spite of the pending bad news, I still feel good, and I can still do things, and that is tremendously helpful.
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