I never got around to mentioning it here, but I had my "annual" MRI (or rather the MRI which I guess is to become an annual thing....) and the results were "unremarkable." In this instance, it's good to be unremarkable.
I'm not sure the stress and expense of an annual MRI is called for, seeing as I have very little breast tissue (probably an "unremarkable" amount) and any recurrence is likely to show up distally, in my bones, liver, brain, lungs or all of the above. At that point, it becomes "incurable." Those types aren't diagnosed until there's some sort of symptoms. It's unlikely that I'd experience a recurrence while I'm taking Tykerb, but that doesn't mean that I don't think about it often.
Meanwhile, I'm happy to be "unremarkable."
Showing posts with label tykerb. Show all posts
Showing posts with label tykerb. Show all posts
Tuesday, November 1, 2011
Sunday, May 15, 2011
Tykerb, week 1
Welp, one week of Tykerb is down. Fifty-one more to go.
So far, it's been OK. I could tell you exactly how many episodes of diarrhea I've had, but that would be TMI, for certain. It's not that bad, though, because it's not accompanied by the "traditional" discomforts of cramping and other intestinal discomfort. All in all, it's been pretty ::meh:: in that regard. Of course, I haven't had to work or anything like that this week. The nausea, though, is increasing. One night I took compazine for it. Guilty pleasure, here. I rather like the spacey way compazine makes me feel; however, I just really don't like having to take stuff, so I haven't taken any more. I do feel queasy, though, much of each day, mostly in the afternoons and evenings. According to the nurse I spoke with the other day, one of three things will happen: this will all go away over the next few weeks after building to some sort of peak first, or I'll have low grade continuous symptoms the entire time I take they Tykerb, or I will have intermittant symptoms.
She gets paid for telling me "well, who knows?" in other words.
I've also noticed some fatigue and some increased mental fuzziness. WTF is up with the fuzziness?
On the postive front, the pain I was having in my one heel and the ball of the opposite foot (which I will admit to having been ready to hear was bone mets) has been mostly cured by the wonderful NP, Julie, at NorthWest Ohio Orthopedics. If you are in this area, I highly recommend their services. Best of all, it's not bone mets.
So far, it's been OK. I could tell you exactly how many episodes of diarrhea I've had, but that would be TMI, for certain. It's not that bad, though, because it's not accompanied by the "traditional" discomforts of cramping and other intestinal discomfort. All in all, it's been pretty ::meh:: in that regard. Of course, I haven't had to work or anything like that this week. The nausea, though, is increasing. One night I took compazine for it. Guilty pleasure, here. I rather like the spacey way compazine makes me feel; however, I just really don't like having to take stuff, so I haven't taken any more. I do feel queasy, though, much of each day, mostly in the afternoons and evenings. According to the nurse I spoke with the other day, one of three things will happen: this will all go away over the next few weeks after building to some sort of peak first, or I'll have low grade continuous symptoms the entire time I take they Tykerb, or I will have intermittant symptoms.
She gets paid for telling me "well, who knows?" in other words.
I've also noticed some fatigue and some increased mental fuzziness. WTF is up with the fuzziness?
On the postive front, the pain I was having in my one heel and the ball of the opposite foot (which I will admit to having been ready to hear was bone mets) has been mostly cured by the wonderful NP, Julie, at NorthWest Ohio Orthopedics. If you are in this area, I highly recommend their services. Best of all, it's not bone mets.
Monday, May 9, 2011
Awareness, pt. 1
Day 1 with the Tykerb, and all is well. Right this very minute, I'm feeling a little queasy; however, who isn't if they really focus on it? Overall, it was a good day. Technically, I accomplished little. This is supposed to be the week that I deep clean all the public areas of our house. Yeah, about that.....
I did manage to make some phone calls and schedule some appointments, so all is good, right?
Regardless, it was a full day. Did some weights at the Community Center, walked a mile or so, had a visit with my NP to discuss some foot pain, scheduled further appointments with an ortho NP, and then went on a bike ride along the Maumee with the Eldest and the Feral Third. Came home and the Eldest fixed a wonderful dinner, which 4/5 of us ate on the patio. The Feral Third and I played catch for awhile and then, after he came home from his internship stuff, the Middle and I took a walk. Now, the Feral Third is in bed, the Middle is doing homework, the Old Man is watching something boring on TV, and the Eldest and I are watching Anthony Bourdain. But enough of this self indulgent, twitter-esque blather no one really cares about.
Instead, a day or so ago I threatened to indulge myself in pondering about the whole concept of Breast Cancer Awareness. To loosely paraphrase myself, I said something to the effect that any teenager who had not been in a coma his or her whole life had to be aware of breast cancer. It's breast cancer, for god's sake, not Leiomyosarcoma. Did you have to look that one up? A few years ago, when my friend told me that she had breast cancer, I didn't have to look it up.
So, we are aware of breast cancer.
In fact, most women know we are supposed to do self breast exams. When we go for our annual gyn exams, we get a clinical breast exam. We know that there are recommendations for mammograms, whether we believe they will find anything or will actually cause cancer or not...we still all know that it is recommended we get them.
Everyone knows what the pink ribbon stands for.
Do you know what the black ribbon stands for? Look it up.
In the sense of knowing that breast cancer exists, that it is common among women, that it is eminently treatable. In fact, if you clicked on the last link I included, and read far enough, you will read those exact words.
And all of this is where the pink ribbon campaigns have been successful: lots of women get breast cancer, it can be screened for, it's treatable. The pink ribbons, the boobie bracelets, the second base stealing and the ta-ta loving campaigns., though, have also brought some false awarenesses (is "awarenesses" a word?).
We are all now aware that breast cancer is fun. Just look at the parties! Breast cancer is yummy! It's beautiful! It's sporty! It's cuddly! It's comfortable!
Well, you get the idea.
I did manage to make some phone calls and schedule some appointments, so all is good, right?
Regardless, it was a full day. Did some weights at the Community Center, walked a mile or so, had a visit with my NP to discuss some foot pain, scheduled further appointments with an ortho NP, and then went on a bike ride along the Maumee with the Eldest and the Feral Third. Came home and the Eldest fixed a wonderful dinner, which 4/5 of us ate on the patio. The Feral Third and I played catch for awhile and then, after he came home from his internship stuff, the Middle and I took a walk. Now, the Feral Third is in bed, the Middle is doing homework, the Old Man is watching something boring on TV, and the Eldest and I are watching Anthony Bourdain. But enough of this self indulgent, twitter-esque blather no one really cares about.
Instead, a day or so ago I threatened to indulge myself in pondering about the whole concept of Breast Cancer Awareness. To loosely paraphrase myself, I said something to the effect that any teenager who had not been in a coma his or her whole life had to be aware of breast cancer. It's breast cancer, for god's sake, not Leiomyosarcoma. Did you have to look that one up? A few years ago, when my friend told me that she had breast cancer, I didn't have to look it up.
So, we are aware of breast cancer.
In fact, most women know we are supposed to do self breast exams. When we go for our annual gyn exams, we get a clinical breast exam. We know that there are recommendations for mammograms, whether we believe they will find anything or will actually cause cancer or not...we still all know that it is recommended we get them. Everyone knows what the pink ribbon stands for.
Do you know what the black ribbon stands for? Look it up.
In the sense of knowing that breast cancer exists, that it is common among women, that it is eminently treatable. In fact, if you clicked on the last link I included, and read far enough, you will read those exact words.
And all of this is where the pink ribbon campaigns have been successful: lots of women get breast cancer, it can be screened for, it's treatable. The pink ribbons, the boobie bracelets, the second base stealing and the ta-ta loving campaigns., though, have also brought some false awarenesses (is "awarenesses" a word?).
We are all now aware that breast cancer is fun. Just look at the parties! Breast cancer is yummy! It's beautiful! It's sporty! It's cuddly! It's comfortable!
Well, you get the idea.
This had better be worth it
 |
| $3,000, give or take, of pills. |
I told the younger two boys over dinner tonight. The Middle was already aware, being pretty active on Facebook and having been following along. The Feral Third was shocked and expressed quite a bit of dismay, but was pretty quickly soothed when I explained it was pills and not infusions and I wouldn't be bald or as sick as I was before. Yet it's after midnight and he's still awake, so who really knows what's going on in his head. He's feral after all. Supposedly, he's been asleep but just woke up realizing he had neither his pillow nor his blanket, whatever that means. The child has more pillows than the rest of the family combined, and I'm pretty sure that he has a blanket or two plus a comforter in his room and isn't reliant upon the little fleece blanket he just took upstairs with him. My speculation is that he's been awake, probably on his laptop or playing with his ipod. There's a reason I refer to him as the Feral Third.
 |
| My nightly dose. Looks benign enough. |
It seems like there should be some fan fare or something. Maybe it will become old hat at some point. One part of chemo that was kind of fun the first time around was waiting to see what sorts of side effects I would have. Well, fun in a sort of intriguing way, not amusement park way. There was some appeal to the concreteness of what I'd only read about, the dirty pocket change taste, the first tingles and pains of neuropathy, the crushing bone pain. For the heavy duty chemo, though, no one escapes unscathed. Everyone loses their hair, for instance. Everyone experiences fatigue and nausea to one degree or another. Not everyone experiences everything, but enough people do that I had the feeling that I wasn't going to get by unscathed. With Tykerb, however, some side effects vary widely. I'm taking it without the partner chemos, which are harsher. So, will I or won't I get side effects? Which ones? How many? When? Tonight? Tomorrow? Two weeks from now?
Let's just assume I won't get any.
I think I'll take an ambien, though, anyway so as to not dwell on this any more than I have to when I go to bed.
P.S. So as to not fritter away my summer, I shall get up in the morning, hop on my bike, head to the Community Center to work out, and then I have an appointment with my G.P. to discuss this issue with my heel, a pain like tennis elbow in my "bad" arm, and a few other niggling things. If I announce here that I am going to work out in the morning, I'm more likely to do it. Feel free to hold me accountable.
Saturday, May 7, 2011
Big Decisions
I've been kicking around a lot of ideas lately, many concerning my blog, many concerning where I go now regarding life, treatment, the future. I've composed numerous entries in my head; however, inertia and the end of the semester have really done a job on getting anything posted here.
To start things off, for those of you not following along on Facebook, I'm doing much better psychologically. Mostly. I'm feeling like that little dip into depression was caused by anesthesia and forgetting to take my Lexapro for a few days. Not something I want to experience again. The whole two surgeries this past academic year, over the dark months nonetheless, has rather messed up my self control, especially regarding eating. I've been indulging in more food in general and more comfort food in specific. Add to that some physical limitations, such as problems with my heels and being forced to NOT do cardio for periods of time and just crappy weather, I've rather porked out over the winter. I've been doing 4 days a week of exercise classes, but that's certainly not the same as doing classes plus running. When I switched out my cold weather with my warm weather clothes, I was really disappointed to discover that I can't even zip some of my pants. So if you see me wearing the same clothes over and over this season, just ignore it.
Also for those of you not following along on Facebook, I have decided to go back into treatment starting next week. When I talk with people and when I do research, I get mixed results as to whether this is chemotherapy or not. The makers of the drug, the nurses at the specialty pharmacy I deal with, and much online literature calls it chemotherapy. My onco nurse doesn't refer to it as such. The drug itself is Tykerb. And I'll be taking it off-label. So if you read that Tykerb is used for advanced, metastatic breast cancer, which I do not have (that I know of). Although functioning in a chemically different way, Tykerb functions very similarly to herceptin, which I was infused with for over a year. Herceptin "attacks" or "blocks" the protein that the type of cancer I have expresses. Herceptin is a large molecule. Tykerb has a small molecular structure and invades cancer cells and also is effective against two types of proteins whereas Herceptin is only effective against one. Tykerb also crosses the blood-brain barrier (BBB) and Herceptin doesn't. Normally, Tykerb is taken with two other drugs, which I won't take because I do not have advanced disease. Most of what is written about Tykerb is written with the assumption that it is taken with one of these two drugs.
This has been a difficult decision. Initially, when I expected my insurance to deny me coverage, I was all over taking Tykerb (it's a pill, by the way...or rather 4-6 pills a day. I'll be taking 4.) . Tykerb is expensive, and as I said earlier, I am taking it off-label. Another friend of mine who has the same health insurance plan was denied coverage for Tykerb a year ago. I've seen it quoted at anywhere from $3K-$6K/month. Assuming that I'd be denied, it was easy for me to agree to try. Really, I had not decision to make. My insurance would make it for me. Then, I got a phone call saying that my insurance would cover it, but that my co-pay would be $2K a month. At that point, it was easy for me to be indignant and to say that I would take it but that I was unable to afford to take it, and I could then rant about death panels and get on my high horse about the need for health care reform. And, although I was concerned over my longevity in the face of not taking it, yet it was good. The decision, ultimately, was out of my hands. And if I got a recurrence, I could blame my insurance company and the Republicans who blocked a decent (or any, really) health care plan.
Then, out of the blue, while sitting in the Walmart parking lot with Amy, I got a phone call. Some odd woman was telling me that my insurance did blah blah blah and my co-pay was going to be $100 a month and how did I want to pay for that this month? It was surreal. I paid by credit card, and she told me that the Tykerb would be delivered in two days.
So, my hasty "yes, I'll take it" without really investigating, since I wasn't really going to take it any way, suddenly became a reality and I new very little about it, other than how it worked, and that it was some serious stuff because in saying "yes, deliver it," I suddenly had to to have two 20 or more minute long discussions on the phone with nurses, an order for blood work, and a book was delivered to my home detailing what side effects to expect and how to deal with them.
Side effects. Do I have to? Really? For starters, it can cause fatal liver failure. Sure it can. Like all chemo, it's toxic (by definition, really). It can also cause congestive heart failure (probably reversible, as if that's a comfort, given that I watched my mom die for chf). It can also cause lung problems (and to be honest, I've just been to freaked to find out about those). All of these problems are found in a small percentage of patients, and my doctor doesn't think I'm at risk. Yet...
hand/foot syndrome, which I hear is a horrible experience--redness, swelling, peeling, sometimes blistering on the palms of the hands and soles of the feet (my friend Scott has experienced this recently and it just doesn't sound fun or like something I would tolerate with grace). On the bright side, hand-foot syndrome, according to my onco nurse, seems to only happen with the addition of one of the other drugs I won't be taking, exactly the drug that Scott is taking. So, I'm hopeful. I have enough pain in my feet already (more about that in another post, as it seems to not be a cancer related pain but perhaps plantar fasciitis).
Tomorrow, then, I'm off to the lab for my blood work in the morning. Then, sometime between then and Sunday evening, I need to discuss this all with boys 2 and 3 (boy 1 is in the loop), and Sunday when I go to bed, I will down the handful of large pills and be on my merry way. I've committed to the summer. All I'm doing this summer is one week of scoring AP exams in June, teaching one class in July (a total of 7 classes and 4 faculty meetings), and taking two courses independent study myself. I'll reassess in August and decide if I'm going to stick it out through fall semester. I'll reassess in December if I'm going to finish out the year of treatment.
At least my hair won't fall out.
My second decision lately is that I need to do something about this blog. What, though, I'm not sure. Look for changes in the future.
To start things off, for those of you not following along on Facebook, I'm doing much better psychologically. Mostly. I'm feeling like that little dip into depression was caused by anesthesia and forgetting to take my Lexapro for a few days. Not something I want to experience again. The whole two surgeries this past academic year, over the dark months nonetheless, has rather messed up my self control, especially regarding eating. I've been indulging in more food in general and more comfort food in specific. Add to that some physical limitations, such as problems with my heels and being forced to NOT do cardio for periods of time and just crappy weather, I've rather porked out over the winter. I've been doing 4 days a week of exercise classes, but that's certainly not the same as doing classes plus running. When I switched out my cold weather with my warm weather clothes, I was really disappointed to discover that I can't even zip some of my pants. So if you see me wearing the same clothes over and over this season, just ignore it.
Also for those of you not following along on Facebook, I have decided to go back into treatment starting next week. When I talk with people and when I do research, I get mixed results as to whether this is chemotherapy or not. The makers of the drug, the nurses at the specialty pharmacy I deal with, and much online literature calls it chemotherapy. My onco nurse doesn't refer to it as such. The drug itself is Tykerb. And I'll be taking it off-label. So if you read that Tykerb is used for advanced, metastatic breast cancer, which I do not have (that I know of). Although functioning in a chemically different way, Tykerb functions very similarly to herceptin, which I was infused with for over a year. Herceptin "attacks" or "blocks" the protein that the type of cancer I have expresses. Herceptin is a large molecule. Tykerb has a small molecular structure and invades cancer cells and also is effective against two types of proteins whereas Herceptin is only effective against one. Tykerb also crosses the blood-brain barrier (BBB) and Herceptin doesn't. Normally, Tykerb is taken with two other drugs, which I won't take because I do not have advanced disease. Most of what is written about Tykerb is written with the assumption that it is taken with one of these two drugs.
This has been a difficult decision. Initially, when I expected my insurance to deny me coverage, I was all over taking Tykerb (it's a pill, by the way...or rather 4-6 pills a day. I'll be taking 4.) . Tykerb is expensive, and as I said earlier, I am taking it off-label. Another friend of mine who has the same health insurance plan was denied coverage for Tykerb a year ago. I've seen it quoted at anywhere from $3K-$6K/month. Assuming that I'd be denied, it was easy for me to agree to try. Really, I had not decision to make. My insurance would make it for me. Then, I got a phone call saying that my insurance would cover it, but that my co-pay would be $2K a month. At that point, it was easy for me to be indignant and to say that I would take it but that I was unable to afford to take it, and I could then rant about death panels and get on my high horse about the need for health care reform. And, although I was concerned over my longevity in the face of not taking it, yet it was good. The decision, ultimately, was out of my hands. And if I got a recurrence, I could blame my insurance company and the Republicans who blocked a decent (or any, really) health care plan.
Then, out of the blue, while sitting in the Walmart parking lot with Amy, I got a phone call. Some odd woman was telling me that my insurance did blah blah blah and my co-pay was going to be $100 a month and how did I want to pay for that this month? It was surreal. I paid by credit card, and she told me that the Tykerb would be delivered in two days.
So, my hasty "yes, I'll take it" without really investigating, since I wasn't really going to take it any way, suddenly became a reality and I new very little about it, other than how it worked, and that it was some serious stuff because in saying "yes, deliver it," I suddenly had to to have two 20 or more minute long discussions on the phone with nurses, an order for blood work, and a book was delivered to my home detailing what side effects to expect and how to deal with them.
Side effects. Do I have to? Really? For starters, it can cause fatal liver failure. Sure it can. Like all chemo, it's toxic (by definition, really). It can also cause congestive heart failure (probably reversible, as if that's a comfort, given that I watched my mom die for chf). It can also cause lung problems (and to be honest, I've just been to freaked to find out about those). All of these problems are found in a small percentage of patients, and my doctor doesn't think I'm at risk. Yet...
hand/foot syndrome, which I hear is a horrible experience--redness, swelling, peeling, sometimes blistering on the palms of the hands and soles of the feet (my friend Scott has experienced this recently and it just doesn't sound fun or like something I would tolerate with grace). On the bright side, hand-foot syndrome, according to my onco nurse, seems to only happen with the addition of one of the other drugs I won't be taking, exactly the drug that Scott is taking. So, I'm hopeful. I have enough pain in my feet already (more about that in another post, as it seems to not be a cancer related pain but perhaps plantar fasciitis).
Tomorrow, then, I'm off to the lab for my blood work in the morning. Then, sometime between then and Sunday evening, I need to discuss this all with boys 2 and 3 (boy 1 is in the loop), and Sunday when I go to bed, I will down the handful of large pills and be on my merry way. I've committed to the summer. All I'm doing this summer is one week of scoring AP exams in June, teaching one class in July (a total of 7 classes and 4 faculty meetings), and taking two courses independent study myself. I'll reassess in August and decide if I'm going to stick it out through fall semester. I'll reassess in December if I'm going to finish out the year of treatment.
At least my hair won't fall out.
My second decision lately is that I need to do something about this blog. What, though, I'm not sure. Look for changes in the future.
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