The seas were choppy today. It has not been a great day.
It started with a little bit of nausea this morning, and I was pretty tired. I took some anti-nausea meds, but I wasn't really able to eat breakfast. We drove to Dana Farber, having made it on time without me throwing up (victory!) but I was just not doing well. To make matters worse, it took FOUR ATTEMPTS to get my IV in this morning. I think that's the worst it's ever been. They were finally able to put it in my hand, but that made knitting awkward, so I've basically just been sleeping all day.
There are eating restrictions with my study medicine, so I wasn't able to eat until 12:40. Once I had something in my stomach, I felt a bit better. Now I'm holding out for a delivery of pizza from Upper Crust for dinner. It's right down the street.
Sorry so lame, I wanted to write something, but there isn't much to talk about today :-/
Thursday, April 28, 2011
Wednesday, April 27, 2011
Captain's Log, Day 2
Today was such a boring day. I'm almost done for the day, so this will be quick. I had to come in for 10 to get my blood drawn, then I took my dose of the study drug and I've had to be available to have my vitals taken, once was an hour after the dose, and the other was 4 hours after the dose. So, I've just been sitting here in this lovely corner infusion room working on the computer and knitting a bit. I've turned the heel on one of the socks:
I still have to do the other one, but I haven't really done much knitting today. I should have plenty of time tomorrow, since it's another all-day appointment.
While I don't want to get too excited, I thought it would be worth mentioning that I am feeling less pain in the liver area. The nausea is mild but manageable without meds. The proof will be with my next scan, about 6 weeks from now.
I still have to do the other one, but I haven't really done much knitting today. I should have plenty of time tomorrow, since it's another all-day appointment.
While I don't want to get too excited, I thought it would be worth mentioning that I am feeling less pain in the liver area. The nausea is mild but manageable without meds. The proof will be with my next scan, about 6 weeks from now.
Tuesday, April 26, 2011
Captain's Log, Day 1 pt. 2: Sock Update
After I finished that blog post I had a stroke of genius... (well, maybe that's a bit of an exaggeration)
Here's a picture of me in the infusion chair AND a sock check. You'll note that I've made lots of progress. I'm hoping to get to the heel soon.
Captain's Log, Day 1
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!
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!
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.
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