Today I'm at Dana Farber for my first treatment in the new protocol. In some ways, this reminds me a lot of when I first started chemotherapy for cancer, but in other ways it is so different.
Instead of the 10 minute drive to Umass Memorial in Worcester (maybe 20 minutes if the Belmont St. exit is really backed up), it took us nearly 90 minutes to drive in, starting at 6:30 AM. In fact, I was almost late. I hate being late. When I arrived, they took my vital signs and brought me right to an infusion room with a good (but foggy) view, instead of the shuttling around from lab to exam room to infusion room (where we would try to squat in a room with a good view between blood draw and exam room). They're pretty efficient here with the sticks, too. Instead of doing a blood draw then another stick for the infusion, they just put in an IV to do it all from the same stick. How smart.
I have lots of meds. I'm on Cisplatin and MK1775 (the active ingredients, so to speak), which are both chemotherapy drugs. There are also a bunch of others. I have an IV anti-nausea drug that is supposed to last me 3 days (which is hopefully the same duration as the nausea). I also have a lot of saline, since the Cisplatin can be harmful to my kidneys. But, to make sure that the water makes its way through, I've also had some other drug (Maritol, I think?) to make sure that I go to the bathroom a lot. Oh, then there was the steroid I had to take to boost the anti-nausea drug. It tasted gross. I think that just about covers it. I'm supposed to write all this stuff down in my drug diary, so I will have the exact names at some point, but you get the idea.
I'm almost done with all the meds, but since this is a Phase 1 trial, there will be lots of blood draws to analyze how my body is metabolizing the drug. I think my last blood draw is at 7:10 PM, so it's kind of a long day, but I've got lots of knitting to do anyway. So far I haven't gotten too much done. I'm in a bit of a fog because of the anti-nausea drugs (or maybe the chemo), so I apologize if this is more like a drunken sailor's journal instead of a captains log.
Okay, I think this is about enough for now, but I will blog again soon. In summary, I'm doing well but I'm a bit out of it. I need to get more knitting done, stat ;-)
Thanks everyone for your e-mails, texts, well wishes, etc. It means a lot!
Tuesday, April 26, 2011
Sunday, April 17, 2011
Progression
This was supposed to be a witty post about how wired I was the day I had my last scan because of the steroids I had to take to help with my allergy to the contrast dye. It was quite amusing; that day I just kept going and going and going...
Instead, it's a post about how the treatment I was on stopped working and the cancer has progressed. I found out last Monday, and it's been kind of a crazy week.
Truth be told, I actually saw it coming. Over the last two weeks I could kind of feel some additional pressure when I took a deep breath or had a big meal. There wasn't really a lot of pain, and it's possible it could be my imagination or even an indication that my liver was healing, so I figured I'd wait to talk to my doctor until I got the scan. Realistically, she was probably going to just have me keep the scheduled scan anyway. I tend to downplay stuff like this, otherwise I'd drive myself nuts with every single little ache, pain, or strange feeling.
Anyway, when I didn't hear from my doctor on Thursday or Friday, I was concerned that it was because she didn't want to give me bad news over the phone. Then I ran 9.3 miles on Saturday and didn't feel any pain at all. Maybe I was okay. However, when I felt a slightly worse pain on Sunday night/Monday morning, I was back to being concerned. On Monday when my doctor and the research nurse came into the exam room, I immediately said, "It's okay, I know it's bad news, just tell me how bad it is." I have this knee-jerk reaction to try to reassure people, which is why I said that.
She was kind of surprised and said, "How did you know?" I told her I was feeling a little bit of discomfort for the last week, but it wasn't bad enough to alert her, but it was getting worse. She told me that the scan showed some new lesions on both sides of the liver and that the two of the larger tumors on the left side had grown together. In her words, the cancer has outsmarted the drugs. She never really quantified how bad it was, but it was clear that the treatment I was on was no longer working and it was time to start something new.
My oncologist was prepared with several treatment options. There were about 4-6 standard forms of chemotherapy and a few studies that we could try. She clearly had her favorites, and this is an area where we just kind of listen and process, but really don't decide. We mostly let her do her job and follow her recommendation. She understands our leanings. We are not driving over an hour every time we want to see her so that we can get standard care when I can get that about 2 miles from my house. We are with her because we want to be involved in the drug trial process so that we can have a wider variety of options to choose from.
The study that I'm going to participate in is a Phase 1 trial. I'll start (as she did), by reviewing the drug trial phases. We all know that I'm not a doctor or a research expert, but I'm a pretty smart cookie and I can summarize what my doctor has told me so that you all don't have to spend your time googling this stuff.
Phase 1
The purpose of this phase is to determine the Maximum Tolerated Dose. At this phase, a drug (or combination of drugs) has already shown promise in animals to treat a condition. The drug has not been studied in humans and it has not been proven to be effective to treat the condition in humans. Researchers don't know how much of the dose should be given to humans, so they begin with 3 patients at a small dose of the drug. Once these patients have tolerated the dose, and the side effects are shown to be minimal or tolerable, they enroll new patients into the study at a higher dose. They continue enrolling new patients at higher doses until the reach a point where the patients can't tolerate the side effects.
As far as I know, they don't re-use patients from earlier phases and give them higher doses of the drug.
Phase 2
The purpose of this phase is to determine whether or not the drug is effective at treating the condition. Here, patients are given the Maximum Tolerated Dose, and the patient is monitored for side effects as well as the effect of the drug on the particular condition.
Phase 3
The purpose of this drug is to compare the drug against standard treatment options to determine whether or not it is more effective than standard care. Oftentimes these studies are randomized. The patient receives either the standard treatment or the trial treatment. Sometimes these are blind studies where the patient and sometimes even the doctor doesn't know what treatment is used.
I believe that in each phase of the drug trial process, patients pretty much can always continue receiving the drug as long as it's continuing to work and there are no critical problems identified with the drugs that show that the risks of the drug outweigh the benefits.
After we reviewed the phases, my doctor reassured me that Phase 1 shouldn't really be associated with a desperate situation. For some patients, their only option is a Phase 1 trial because all other treatments have stopped working, but that's not always the case. In this trial, she believes that the trial is far enough along that I will be receiving a meaningfully large amount of the drug (versus the very beginning of the trial). I did a little research and found that the trial started in 2008 and is set to close in 2012, so I am entering the trial about 75% of the way through it, which means I am getting a dose that is pretty close to the Maximum Tolerated Dose.
The great part about this trial is that I will be receiving a new drug, MK-1775, with another drug that is already used to treat metastatic breast cancer, cisplatin: http://clinicaltrials.gov/ct2/show/NCT00648648 If the study drug does nothing, at least I'm receiving a drug that has been shown to treat the kind of cancer I have. The last study used a new drug combined with an existing chemotherapy drug that was used to treat different kinds of cancer by destroying their DNA. The existing drug (temozolomide) wasn't really effective for treating metastatic breast cancer on its own.
And that would be where I'm directing my focus and my positive thoughts. Hearing that the disease had progressed was pretty devastating, even if I was expecting it. The bad news is that I kind of feel just how I did before I started treatment and I've blown through a treatment option in 6 months. I could dwell on that, and honestly I did dwell on that for a day or two. However, the good news and the positive spin is that I exhausted a treatment option that most patients don't even have. I got an extra 6 months of life that maybe I wouldn't have gotten if I lived several hours away from the nearest experimental cancer treatment center. The great news is that this time I'll be getting a proven treatment option with something extra.
My first day of treatment is April 26th. The chemotherapy is delivered by IV, and it happens once every three weeks. This drug will probably have worse side effects than what I experienced on the last trial. There should be more nausea, decrease of appetite, etc. The good news is that each round is 3 weeks long, and I'll be getting scanned every 6 weeks, instead of 8. If and when it stops working, we should know even sooner. Since this is a Phase 1 trial, I have to go to a different Dana Farber campus. I'll be going to the new Yawkey building, which is actually pretty close to Fenway Park. I went there the other day for some pre-testing. It's a beautiful building that is going to be a complete pain in the ass to get to ;-)
I will do my best to keep the blog updated, but I'll stop here for those of you who have started to doze off and are hitting your head on the keyboard.
Instead, it's a post about how the treatment I was on stopped working and the cancer has progressed. I found out last Monday, and it's been kind of a crazy week.
Truth be told, I actually saw it coming. Over the last two weeks I could kind of feel some additional pressure when I took a deep breath or had a big meal. There wasn't really a lot of pain, and it's possible it could be my imagination or even an indication that my liver was healing, so I figured I'd wait to talk to my doctor until I got the scan. Realistically, she was probably going to just have me keep the scheduled scan anyway. I tend to downplay stuff like this, otherwise I'd drive myself nuts with every single little ache, pain, or strange feeling.
Anyway, when I didn't hear from my doctor on Thursday or Friday, I was concerned that it was because she didn't want to give me bad news over the phone. Then I ran 9.3 miles on Saturday and didn't feel any pain at all. Maybe I was okay. However, when I felt a slightly worse pain on Sunday night/Monday morning, I was back to being concerned. On Monday when my doctor and the research nurse came into the exam room, I immediately said, "It's okay, I know it's bad news, just tell me how bad it is." I have this knee-jerk reaction to try to reassure people, which is why I said that.
She was kind of surprised and said, "How did you know?" I told her I was feeling a little bit of discomfort for the last week, but it wasn't bad enough to alert her, but it was getting worse. She told me that the scan showed some new lesions on both sides of the liver and that the two of the larger tumors on the left side had grown together. In her words, the cancer has outsmarted the drugs. She never really quantified how bad it was, but it was clear that the treatment I was on was no longer working and it was time to start something new.
My oncologist was prepared with several treatment options. There were about 4-6 standard forms of chemotherapy and a few studies that we could try. She clearly had her favorites, and this is an area where we just kind of listen and process, but really don't decide. We mostly let her do her job and follow her recommendation. She understands our leanings. We are not driving over an hour every time we want to see her so that we can get standard care when I can get that about 2 miles from my house. We are with her because we want to be involved in the drug trial process so that we can have a wider variety of options to choose from.
The study that I'm going to participate in is a Phase 1 trial. I'll start (as she did), by reviewing the drug trial phases. We all know that I'm not a doctor or a research expert, but I'm a pretty smart cookie and I can summarize what my doctor has told me so that you all don't have to spend your time googling this stuff.
Phase 1
The purpose of this phase is to determine the Maximum Tolerated Dose. At this phase, a drug (or combination of drugs) has already shown promise in animals to treat a condition. The drug has not been studied in humans and it has not been proven to be effective to treat the condition in humans. Researchers don't know how much of the dose should be given to humans, so they begin with 3 patients at a small dose of the drug. Once these patients have tolerated the dose, and the side effects are shown to be minimal or tolerable, they enroll new patients into the study at a higher dose. They continue enrolling new patients at higher doses until the reach a point where the patients can't tolerate the side effects.
As far as I know, they don't re-use patients from earlier phases and give them higher doses of the drug.
Phase 2
The purpose of this phase is to determine whether or not the drug is effective at treating the condition. Here, patients are given the Maximum Tolerated Dose, and the patient is monitored for side effects as well as the effect of the drug on the particular condition.
Phase 3
The purpose of this drug is to compare the drug against standard treatment options to determine whether or not it is more effective than standard care. Oftentimes these studies are randomized. The patient receives either the standard treatment or the trial treatment. Sometimes these are blind studies where the patient and sometimes even the doctor doesn't know what treatment is used.
I believe that in each phase of the drug trial process, patients pretty much can always continue receiving the drug as long as it's continuing to work and there are no critical problems identified with the drugs that show that the risks of the drug outweigh the benefits.
After we reviewed the phases, my doctor reassured me that Phase 1 shouldn't really be associated with a desperate situation. For some patients, their only option is a Phase 1 trial because all other treatments have stopped working, but that's not always the case. In this trial, she believes that the trial is far enough along that I will be receiving a meaningfully large amount of the drug (versus the very beginning of the trial). I did a little research and found that the trial started in 2008 and is set to close in 2012, so I am entering the trial about 75% of the way through it, which means I am getting a dose that is pretty close to the Maximum Tolerated Dose.
The great part about this trial is that I will be receiving a new drug, MK-1775, with another drug that is already used to treat metastatic breast cancer, cisplatin: http://clinicaltrials.gov/ct2/show/NCT00648648 If the study drug does nothing, at least I'm receiving a drug that has been shown to treat the kind of cancer I have. The last study used a new drug combined with an existing chemotherapy drug that was used to treat different kinds of cancer by destroying their DNA. The existing drug (temozolomide) wasn't really effective for treating metastatic breast cancer on its own.
And that would be where I'm directing my focus and my positive thoughts. Hearing that the disease had progressed was pretty devastating, even if I was expecting it. The bad news is that I kind of feel just how I did before I started treatment and I've blown through a treatment option in 6 months. I could dwell on that, and honestly I did dwell on that for a day or two. However, the good news and the positive spin is that I exhausted a treatment option that most patients don't even have. I got an extra 6 months of life that maybe I wouldn't have gotten if I lived several hours away from the nearest experimental cancer treatment center. The great news is that this time I'll be getting a proven treatment option with something extra.
My first day of treatment is April 26th. The chemotherapy is delivered by IV, and it happens once every three weeks. This drug will probably have worse side effects than what I experienced on the last trial. There should be more nausea, decrease of appetite, etc. The good news is that each round is 3 weeks long, and I'll be getting scanned every 6 weeks, instead of 8. If and when it stops working, we should know even sooner. Since this is a Phase 1 trial, I have to go to a different Dana Farber campus. I'll be going to the new Yawkey building, which is actually pretty close to Fenway Park. I went there the other day for some pre-testing. It's a beautiful building that is going to be a complete pain in the ass to get to ;-)
I will do my best to keep the blog updated, but I'll stop here for those of you who have started to doze off and are hitting your head on the keyboard.
Saturday, March 26, 2011
Unscanned
I was supposed to have another scan on March 14th. This was an extra scan ordered by the study because the results of the last one were so good. So, I did the usual fasting for 4 hours, arrived at Dana Farber and drank the slightly unpleasant-tasting gastroview stuff, had the IV put in for the blood draw and contrast dye, and made my way to the radiology waiting room. That description has a way of minimizing how much of a pain in the ass all that stuff is on the days that I have to get a CT scan. It's kind of annoying.
It took awhile for the labs to come back clearing me for the scan, but when it was finally my turn to get the CT scan I made an off-hand remark to the tech that changed everything.
"So, I'm not sure if this is a big deal, but the last few times I've had a scan I sneezed a few times afterwards," I said.
The first time it happened, I thought it was allergies. That first time after I sneezed the techs had this look of fear that really freaked me out. I assured them that it was just a case of seasonal allergies and they let me leave. The next time it happened, I was out of the room by the time I sneezed. The next time, they asked me if I felt okay and whether or not I needed a glass of water. Each time, they reacted kind of strangely and it kind of bothered me, so I didn't want to make a big deal out of it (I find that a cancer patient's day goes by more smoothly by minimizing things like this, or so I thought).
This time, I decided to mention the sneezing before the scan, and this turned out to be a big mistake.
"I can't pretend I didn't hear that, Megan."
Huh? Why on earth is this such a big deal?!
It turns out that this is a sign of an allergic reaction to the contrast dye, and this is something that can get worse. A sneeze is no big deal, but the tech explained to me that this could escalate to difficulty breathing, even requiring CPR. Patients that have this kind of reaction are forever marked, and must be pre-medicated the day before the scan to prevent any further allergic reactions. Since I alerted them before the scan, they had to cancel the scan that day.
I was devastated. All this prep work for nothing. All I could imagine was how this was going to mess things up. What if I had to return the next day for the scan? I already wasted several hours prepping for this one! Two IVs in two days?! Ugh! Why, oh why, did I have to say anything? I know a stupid sneeze wasn't going to turn into a big deal this one time. Sure, it may get worse, but I probably had a while before my allergic reaction turned into something requiring CPR. Sigh. I started crying, which just made the whole situation even worse, and it was so embarrassing.
It turned out to be not that big of a deal. Since this was an "extra" scan, the study doctor agreed that it was okay for me to skip this one. I'll be getting another one in a couple of weeks anyways, and this time I have a steroid that I have to take 12 hours before the scan. My oncologist agreed that the whole thing was blown out of proportion and that I probably would have been fine, but she wasn't upset with me or anything. She was more upset that the tech didn't just do the damn scan and make me do the pre-medication the next time. But, if there was any time for this to happen, this was the perfect time. If it was my 2-month scan I probably would have had to come back.
I lamented that I was suddenly becoming a high-maintenance patient. The funny thing was that my oncologist and research nurse both said at the same time "Ooooooh no. This is nothing. You have no idea how difficult some of our other patients can be". Phew. The last thing I wanted was to be unseated as Most Pleasant Patient. :-)
Anyway, the good news is that my platelet counts were good and I was able to be treated on my four-week schedule. I also told my oncologist and the research nurse that my nausea was so mild on the lower chemo dose that I didn't feel I needed the stronger anti-nausea meds and they let me skip those. The thing I don't like about them is they make me a little dizzy. I felt so good my first day of treatment (which was also my first day off as a part-timer) that I ran 6 miles. I'm training for a half marathon in Worcester in June, hence the long run. I'll say more about that as it gets closer.
It took awhile for the labs to come back clearing me for the scan, but when it was finally my turn to get the CT scan I made an off-hand remark to the tech that changed everything.
"So, I'm not sure if this is a big deal, but the last few times I've had a scan I sneezed a few times afterwards," I said.
The first time it happened, I thought it was allergies. That first time after I sneezed the techs had this look of fear that really freaked me out. I assured them that it was just a case of seasonal allergies and they let me leave. The next time it happened, I was out of the room by the time I sneezed. The next time, they asked me if I felt okay and whether or not I needed a glass of water. Each time, they reacted kind of strangely and it kind of bothered me, so I didn't want to make a big deal out of it (I find that a cancer patient's day goes by more smoothly by minimizing things like this, or so I thought).
This time, I decided to mention the sneezing before the scan, and this turned out to be a big mistake.
"I can't pretend I didn't hear that, Megan."
Huh? Why on earth is this such a big deal?!
It turns out that this is a sign of an allergic reaction to the contrast dye, and this is something that can get worse. A sneeze is no big deal, but the tech explained to me that this could escalate to difficulty breathing, even requiring CPR. Patients that have this kind of reaction are forever marked, and must be pre-medicated the day before the scan to prevent any further allergic reactions. Since I alerted them before the scan, they had to cancel the scan that day.
I was devastated. All this prep work for nothing. All I could imagine was how this was going to mess things up. What if I had to return the next day for the scan? I already wasted several hours prepping for this one! Two IVs in two days?! Ugh! Why, oh why, did I have to say anything? I know a stupid sneeze wasn't going to turn into a big deal this one time. Sure, it may get worse, but I probably had a while before my allergic reaction turned into something requiring CPR. Sigh. I started crying, which just made the whole situation even worse, and it was so embarrassing.
It turned out to be not that big of a deal. Since this was an "extra" scan, the study doctor agreed that it was okay for me to skip this one. I'll be getting another one in a couple of weeks anyways, and this time I have a steroid that I have to take 12 hours before the scan. My oncologist agreed that the whole thing was blown out of proportion and that I probably would have been fine, but she wasn't upset with me or anything. She was more upset that the tech didn't just do the damn scan and make me do the pre-medication the next time. But, if there was any time for this to happen, this was the perfect time. If it was my 2-month scan I probably would have had to come back.
I lamented that I was suddenly becoming a high-maintenance patient. The funny thing was that my oncologist and research nurse both said at the same time "Ooooooh no. This is nothing. You have no idea how difficult some of our other patients can be". Phew. The last thing I wanted was to be unseated as Most Pleasant Patient. :-)
Anyway, the good news is that my platelet counts were good and I was able to be treated on my four-week schedule. I also told my oncologist and the research nurse that my nausea was so mild on the lower chemo dose that I didn't feel I needed the stronger anti-nausea meds and they let me skip those. The thing I don't like about them is they make me a little dizzy. I felt so good my first day of treatment (which was also my first day off as a part-timer) that I ran 6 miles. I'm training for a half marathon in Worcester in June, hence the long run. I'll say more about that as it gets closer.
Sunday, March 6, 2011
Livin' the Dream
Starting on Pi Day (that's March 14th for you non-geeks) I'll be going to work part time. This is something I've been thinking about for awhile, and something Rusty and I have talked about over the past few months. I'll be working 9 hours a day on Monday, Wednesday, and Friday. These hours allow me to keep benefits and they would also allow me to be eligible for Family Medical Leave Act (FMLA) time off if I really need to stop working.
It all started when I heard an interview on NPR with a writer, Norah Ephron. The article and interview can be found here:
http://www.npr.org/templates/story/story.php?storyId=131161208
I don't remember the whole interview (it's been a couple of months since I listened to it), but the part that really got me was toward the end where she was talking about how she and her friends had a discussion about what they wanted for their last meal. One of those friends later developed throat cancer, and the sad thing was that she could never have her last meal. She made the obvious point that you should eat that "last meal" all the time. Don't wait for it. That really got me thinking and made me realize that I wanted to do this.
It all started when I heard an interview on NPR with a writer, Norah Ephron. The article and interview can be found here:
http://www.npr.org/templates/story/story.php?storyId=131161208
I don't remember the whole interview (it's been a couple of months since I listened to it), but the part that really got me was toward the end where she was talking about how she and her friends had a discussion about what they wanted for their last meal. One of those friends later developed throat cancer, and the sad thing was that she could never have her last meal. She made the obvious point that you should eat that "last meal" all the time. Don't wait for it. That really got me thinking and made me realize that I wanted to do this.
I don't really need to take time off, but I want to enjoy my time now because I feel good and I'm healthy. I don't want to wish I had done it, I want to do it. My goal is to spend one of those two days per week getting things done around the house that I've always wanted to do (the kind of things that nag at me). The other day will be for fun. I envision lots of sewing and knitting, but I'll keep my options open.
Some people at work know what's going on, but some people don't. My boss asked me what I wanted to tell people, and we'll say that I'm taking time off to deal with a family situation/help out with family stuff. It's intentionally vague. I expect the people who know what's happening in my life to understand, but the people who have no idea hopefully won't ask. I still don't feel comfortable telling everyone at work at this point.
Hopefully more time will mean more blogging. We'll see :-)
Monday, February 28, 2011
The Mask
"Is this what has to happen to get you to write in your blog?"
I thought about it for a second, and I answered my mom, "Yes! I'm going to write about this in my blog. Yes, I promise I'll write about this in my blog."
I was speaking from behind a surgical mask. About ten or fifteen minutes earlier we arrived Dana Farber and the receptionist asked if I was experiencing any cold or flu symptoms. There was no way I could hide it. My voice was incredibly hoarse and my nose was running.
"How did you guess?" I replied.
"Oh, well we ask that you wear this mask while you're here."
Ugh. How embarrassing. They gave me this ridiculous surgical mask to wear while everyone else with a cough or a sniffle either lied or waltzed right past the receptionist because she was only asking patients! Come on. For every patient there is at least one or two supporters, and the statistical likelihood that I was the only person in that waiting room with a communicable disease was quite low. Yet I was the only one wearing a stupid mask. So, there I sat, looking like a SARS patient and grumbling about it the entire time. When I went to get my vitals taken, they even used a special ear thermometer instead of the one that goes in my mouth. Cue the eye roll. I don't handle these things gracefully, in case you didn't know.
As I sat there, fuming, my mom tried to lighten the situation by asking if I would blog about it, and here I am. A promise is a promise, even if the incident did happen over a month ago.
The whole time I couldn't help but think about how these other cancer patients deal with the real world. I mean, when they go to the grocery store do they ask the cashier to put on a mask? (I think I may have said this aloud a couple of times). I think if you happen to have a depressed immune system, it's your job to make sure you don't catch anything from anyone else. Ask me how I feel about it when I'm on the other side of the surgical mask. Gosh I hope I feel the same way so I'm not a hypocrite.
The irony is, I'm pretty sure I got sick at the doctor's office the week before. The good news is, they've started asking if anyone that arrives with the patient has cold or flu symptoms. The fantastic news is, I didn't have cold or flu symptoms the last time I went to the doctors office, so I didn't have to wear the stupid surgical mask again.
I thought about it for a second, and I answered my mom, "Yes! I'm going to write about this in my blog. Yes, I promise I'll write about this in my blog."
I was speaking from behind a surgical mask. About ten or fifteen minutes earlier we arrived Dana Farber and the receptionist asked if I was experiencing any cold or flu symptoms. There was no way I could hide it. My voice was incredibly hoarse and my nose was running.
"How did you guess?" I replied.
"Oh, well we ask that you wear this mask while you're here."
Ugh. How embarrassing. They gave me this ridiculous surgical mask to wear while everyone else with a cough or a sniffle either lied or waltzed right past the receptionist because she was only asking patients! Come on. For every patient there is at least one or two supporters, and the statistical likelihood that I was the only person in that waiting room with a communicable disease was quite low. Yet I was the only one wearing a stupid mask. So, there I sat, looking like a SARS patient and grumbling about it the entire time. When I went to get my vitals taken, they even used a special ear thermometer instead of the one that goes in my mouth. Cue the eye roll. I don't handle these things gracefully, in case you didn't know.
As I sat there, fuming, my mom tried to lighten the situation by asking if I would blog about it, and here I am. A promise is a promise, even if the incident did happen over a month ago.
The whole time I couldn't help but think about how these other cancer patients deal with the real world. I mean, when they go to the grocery store do they ask the cashier to put on a mask? (I think I may have said this aloud a couple of times). I think if you happen to have a depressed immune system, it's your job to make sure you don't catch anything from anyone else. Ask me how I feel about it when I'm on the other side of the surgical mask. Gosh I hope I feel the same way so I'm not a hypocrite.
The irony is, I'm pretty sure I got sick at the doctor's office the week before. The good news is, they've started asking if anyone that arrives with the patient has cold or flu symptoms. The fantastic news is, I didn't have cold or flu symptoms the last time I went to the doctors office, so I didn't have to wear the stupid surgical mask again.
Tuesday, February 15, 2011
Head of the Class
The last time I wrote (yes, I realize it was ages ago) I had just learned the results of my CT scan, showing approximately a 30% reduction in the tumors in my liver. While it was good news, it didn't really sound great to me. It was definitely a step in the right direction, but my oncologist did admit that the first scan usually shows the most improvement and the results can drop off (sometimes significantly) after that.
Well, the last two months have been great from a personal perspective. Rusty and I went to Mexico to see a rock band, Umphrey's McGee. We have lots of pictures. I'll share a few of my favorites.
We also got to see lots of Phish (yay!) and we spent time with our family for each of the holidays. It makes the cold weather bearable. Well, so does 80 degree weather in Mexico.
The last two months have also been very good from a healing perspective. I recently got the results from my last scan, and since my very first scan, the tumor has shrank a total of 55%!! My doctor called me with the news and she told me that she was very pleased with the results and that it's been a long time since she's seen results as good as this.
I had my most recent follow-up appointment yesterday and I was curious if other patients were doing this well on the trial. She and the research nurse agreed that I was pretty close to having the best response. Then she went on to say quite humorously that I was by far the patient she enjoyed the most. Then we went into a series of "bests." I told her that I wasn't used to getting second place in anything, so I was going to have to make sure my third scan was even better. The research nurse started playing along, so she asked if I was able to work throughout the treatment week. I told her I only took one day to work from home and she agreed I was definitely the most "high functioning" patient they had. Since my response was so good, the study calls for an extra scan, so I'll be getting one within 30 days instead of the usual 2 months. I told them I assume this is so they have better pictures for the awards ceremony and we all got a laugh out of that.
It was a good appointment, and I'm definitely happy with my oncologist at Dana Farber and with the research nurse who is so diligent. They're both awesome. This month my Temozolomide dosage is being reduced according to the study protocol because my low platelets have been delaying treatment by a week every round. On one hand, my doctor wasn't happy to be messing with a good thing. However, the hope is that I'll be able to stay on a 4-week rotation schedule with the newer dosage so the results should be just as good or better. We shall see. I've just completed day one, which is the day I stay home because the anti-nausea meds make me feel a little light-headed and "out of it." I hope that the lower chemo dose will mean less nausea problems this round.
Thanks for reading!
Well, the last two months have been great from a personal perspective. Rusty and I went to Mexico to see a rock band, Umphrey's McGee. We have lots of pictures. I'll share a few of my favorites.
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| The view from our oceanfront balcony. |
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| Mayan ruins at Tulum. Can you see the lizard? |
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| Swimming with turtles at Akumal beach. |
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| In the pool at the resort. |
The last two months have also been very good from a healing perspective. I recently got the results from my last scan, and since my very first scan, the tumor has shrank a total of 55%!! My doctor called me with the news and she told me that she was very pleased with the results and that it's been a long time since she's seen results as good as this.
I had my most recent follow-up appointment yesterday and I was curious if other patients were doing this well on the trial. She and the research nurse agreed that I was pretty close to having the best response. Then she went on to say quite humorously that I was by far the patient she enjoyed the most. Then we went into a series of "bests." I told her that I wasn't used to getting second place in anything, so I was going to have to make sure my third scan was even better. The research nurse started playing along, so she asked if I was able to work throughout the treatment week. I told her I only took one day to work from home and she agreed I was definitely the most "high functioning" patient they had. Since my response was so good, the study calls for an extra scan, so I'll be getting one within 30 days instead of the usual 2 months. I told them I assume this is so they have better pictures for the awards ceremony and we all got a laugh out of that.
It was a good appointment, and I'm definitely happy with my oncologist at Dana Farber and with the research nurse who is so diligent. They're both awesome. This month my Temozolomide dosage is being reduced according to the study protocol because my low platelets have been delaying treatment by a week every round. On one hand, my doctor wasn't happy to be messing with a good thing. However, the hope is that I'll be able to stay on a 4-week rotation schedule with the newer dosage so the results should be just as good or better. We shall see. I've just completed day one, which is the day I stay home because the anti-nausea meds make me feel a little light-headed and "out of it." I hope that the lower chemo dose will mean less nausea problems this round.
Thanks for reading!
Monday, November 29, 2010
When thirty percent is actually an A
I've been doing the TMZ/ABT-88 phase 2 trial for two months now, and according to the protocol I am due for a scan after every 2 cycles. Today I went to Dana Farber to get the results of a CT scan that I went for on Friday.
My doctor was very happy to report that the CT scan showed a reduction of approximately 30%. Now, I'm not used to 30%. I always got A's in school, but I guess this is a good result. What's more, the CT can't tell the difference between necrotic tissue and tumor, so it could be even better than that (there could be a lot of dead tissue that is not tumor but still looks like tumor on the scan). She also said that my first scan showed one of the major blood vessels in my liver as being compressed by a tumor. That blood vessel is back to normal and is doing much better. The scan also showed clear lungs and intestines and all that good stuff.
So, it looks like the trial is working. I've been having trouble with a low platelet count, so my treatment is delayed for another week (this is the second time that's happened). While that sucks, it's just a week and it's not the end of the world.
There's something sad about this time, though. On Sunday, November 28 (yesterday), I have an appointment on my calendar and it says "NED". This marks the day that I ended treatment 2 years ago, which is called the NED date, or "No Evidence of Disease". It's kind of sad that I didn't even make it 2 years.
I'm sorry that it's taken me so long to post. I have a relatively new hobby. If it comes down to blogging or knitting, I'll choose knitting almost every time. Soon I'll post a picture of my Waiting Room Socks. I'm making good progress, but there's not as much waiting as I expected!
My doctor was very happy to report that the CT scan showed a reduction of approximately 30%. Now, I'm not used to 30%. I always got A's in school, but I guess this is a good result. What's more, the CT can't tell the difference between necrotic tissue and tumor, so it could be even better than that (there could be a lot of dead tissue that is not tumor but still looks like tumor on the scan). She also said that my first scan showed one of the major blood vessels in my liver as being compressed by a tumor. That blood vessel is back to normal and is doing much better. The scan also showed clear lungs and intestines and all that good stuff.
So, it looks like the trial is working. I've been having trouble with a low platelet count, so my treatment is delayed for another week (this is the second time that's happened). While that sucks, it's just a week and it's not the end of the world.
There's something sad about this time, though. On Sunday, November 28 (yesterday), I have an appointment on my calendar and it says "NED". This marks the day that I ended treatment 2 years ago, which is called the NED date, or "No Evidence of Disease". It's kind of sad that I didn't even make it 2 years.
I'm sorry that it's taken me so long to post. I have a relatively new hobby. If it comes down to blogging or knitting, I'll choose knitting almost every time. Soon I'll post a picture of my Waiting Room Socks. I'm making good progress, but there's not as much waiting as I expected!
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