My previous post discussed the problems I have been having because I am taking Celexa, Trazadone and Tramadol to manage side effects of my chemotherapy. I had a scheduled appointment with my hepatologist this past Friday and decided to bring these issues up at the meeting.
That plan was derailed from the start. When I got to the doctor’s office, my appointment had been cancelled. It was irritating as hell, but they did immediately contact my nurse practitioner Alex who called in the overall Hep C treatment nurse Tammy for a three-way consult. I explained my symptoms and my worries about serotonin overload. Tammy agreed with me that my symptoms could be some level of serotonin syndrome and she and Alex both said I should stop the Tramadol. I told them that the only effective means I had of dealing with the muscle pain I get each injection cycle was to take 800 mg of Ibuprofen every 4 hours. I said it worked fine, but that I had been told it was bad for my kidneys. They agreed but said that in the hepatology department they do not prescribe any opiate-based painkillers. I would have to talk to my primary care doctor in order to get anything prescribed. This sets me up for a great meeting with Dr. K to engage in some classic drug-seeking behavior. I need that stress like I need another hemorrhoid.
I also told them I wanted to change from Trazadone to something else for sleep. They were both resistant to that suggestion. Apparently Trazadone is prescribed along with Celexa and other antidepressants fairly commonly and without problems. I explained that my nervous system is sensitive to drugs and perhaps we should cut back to only one serotonin reuptake inhibitor. They told me that we should eliminate one at a time. Not a bad idea, but then they don’t feel as jumpy as I do.
That was five days ago and it has been a nasty five days indeed. I decided to stop the trazadone as well as the tramadol to try to get my serotonin levels done more quickly. The first 3 days were especially rough at night. My legs were so twitchy that I had to keep getting out of bed to walk around and tire them out. When I got back to be, I had a ten minute window to fall asleep before the twitching would start again and I would have to start pacing, It was a great deal like the symptoms described in this post, but they lasted longer and were more intense. I managed to get about four hours of sleep a night.
The past few days have been better. I have less general jumpiness, irritability and nervousness during the day. The nights are still difficult, but I have been able to get five to six hours of sleep. I am going to try some over-the-counter sleep stuff of some kind if this goes on much longer.
I think I made the right choice to get off the tramadol and the trazadone, but I certainly wish I had a better idea of how long it’s going to take for my body to settle down a bit. I have dealt with restless leg syndrome all my life, but if this goes on much longer I’ll need stronger drugs than celexa to keep me sane…
Thursday, October 14, 2010
Saturday, October 9, 2010
Minding Your Drug Interactions
Among the disadvantages of being in a drug research study is the tendency for discontinuity in your medical care. The RO5024048 Roche study that I participated in was run by Dr. Natalie Bzowej. It was administered by the Hepatology Center at California Pacific Medical Centers (CPMC). CPMC is a first rate institution and they do cutting edge Hepatitis C research. The doctors are excellent, but as is true with specialists everywhere, they are busy people with many patients. When I screened for the study, I was examined by Dr. Frederick. For early symptoms of rash, sweats etc, I was examined by Dr. Merriman. When I had difficulty with pain issues I was examined by Dr. Bonacini and prescribed Tramadol. Later, when I was having trouble with sleep, I was examined by Dr. Frederick and prescribed Trazadone. When depression issues cropped up, I was examined by Dr. Bzowej and prescribed Paxil. and added Ativan for use as needed. After I reported difficulties with the Paxil, I was seen by Dr. Frederick again and he changed the antidepressant to Celexa Finally, my thyroid function was affected by the research meds and I was put on Levothyroxine by my primary care doctor.
Over time, this can add up to a significant number of medications creating their own set of interactions with each other that have to be carefully attended to. This is something that you should not be leaving solely to the doctors treating you. All the doctors in the hepatology center work on the same team. They are all involved in doing research and, to the limits imposed by patient and study confidentiality restrictions, they communicate with each other and share patient information. However, each doctor has preferred medications they are familiar with and prescribe regularly. This creates a situation in which each doctor is thoroughly familiar with certain meds and they may not be conversant in the effects and interactions of meds preferred and prescribed by the other doctors. You have to do your own research on the drugs you are taking and the potential interactions between them all. I found the drug interaction database at drugs.com to be particularly helpful. If you find something, contact your doctor and get their response. If you feel you need to change drugs, tell them. Keep at it until you get answers that satisfy you.
In my case, I was prescribed tramadol, trazadone and celexa. All have the effect of inhibiting serotonin reuptake in the brain. While this is a good thing for combating depression, if it results in an overabundance of serotonin in the brain, it can cause serious problems: irritability, confusion, tremor, stronger reflex reactions, sweats and potentially even seizures. I do not think these would have been prescribed together if all my symptoms had manifested at the same time. But as each was prescribed for a symptom that was occurring at separate times in the study, I ended up taking them all. There are days when I have to take all three and it is on those days that I have been noticing an increase in my some of my symptoms.
I have increased irritability, a general increase in physical tension and in activities like rubbing my hands, pacing, grinding my teeth, etc. This is all symptomatic of serotonin syndrome which I thought I experienced a few months ago. I am seeing both my primary care doctor and my hepatologist this week and will bring this all up with them both. I would like to see another painkiller substituted for the tramadol and perhaps another sleep aid substituted for the trazadone. I am not sure which way the doctors will want to go but I am tired of feeling this way and need a change.
Over time, this can add up to a significant number of medications creating their own set of interactions with each other that have to be carefully attended to. This is something that you should not be leaving solely to the doctors treating you. All the doctors in the hepatology center work on the same team. They are all involved in doing research and, to the limits imposed by patient and study confidentiality restrictions, they communicate with each other and share patient information. However, each doctor has preferred medications they are familiar with and prescribe regularly. This creates a situation in which each doctor is thoroughly familiar with certain meds and they may not be conversant in the effects and interactions of meds preferred and prescribed by the other doctors. You have to do your own research on the drugs you are taking and the potential interactions between them all. I found the drug interaction database at drugs.com to be particularly helpful. If you find something, contact your doctor and get their response. If you feel you need to change drugs, tell them. Keep at it until you get answers that satisfy you.
In my case, I was prescribed tramadol, trazadone and celexa. All have the effect of inhibiting serotonin reuptake in the brain. While this is a good thing for combating depression, if it results in an overabundance of serotonin in the brain, it can cause serious problems: irritability, confusion, tremor, stronger reflex reactions, sweats and potentially even seizures. I do not think these would have been prescribed together if all my symptoms had manifested at the same time. But as each was prescribed for a symptom that was occurring at separate times in the study, I ended up taking them all. There are days when I have to take all three and it is on those days that I have been noticing an increase in my some of my symptoms.
I have increased irritability, a general increase in physical tension and in activities like rubbing my hands, pacing, grinding my teeth, etc. This is all symptomatic of serotonin syndrome which I thought I experienced a few months ago. I am seeing both my primary care doctor and my hepatologist this week and will bring this all up with them both. I would like to see another painkiller substituted for the tramadol and perhaps another sleep aid substituted for the trazadone. I am not sure which way the doctors will want to go but I am tired of feeling this way and need a change.
Sunday, October 3, 2010
The latest Viral Load Results – Sort of
When I checked the mailbox Saturday, I saw the envelope with my latest test results. Two weeks ago when my last test numbers came in the mail, I did some serious magical thinking. I implored nature to be on my side, I beseeched luck and karma and I chanted to myself all the way into the house. This time, the site of the envelope made me queasy. I was so close to undetectable last time and want so much to finally be undetectable with this test, that fear was the main emotion I felt. I want good news. I want the prize and I don’t know how I will react if the numbers don’t back up what I want to happen.
I take the envelope into the house, tear it open and scan down the page past the white and red blood cell results to the RNA quantitative numbers. There I see this statement: “test cancelled, coding error, resubmitted to LIS.” I have been either in the RO5024048 study or in Standard of Care chemotherapy for 10 months. During that time I have had over 40 separate blood draws with hundreds of tests done on the blood. Never during all that has a test failed, been cancelled or had faulty results. But this week, when I may see the result I have been waiting for since I got bounced out of the study by the viral breakthrough, something was wrong with either the blood or the test. To say it is torture would be an insult to those who have actually undergone torture, but mental agony, yes indeed.
I will call my nurse on Monday to check if the test was redone and there are any updated results, but I have the sickening feeling that I won’t see any updated viral load numbers until the results of the test scheduled for this coming Wednesday come back in a couple of weeks.
When you are in chemotherapy your focus tends to narrow. Test results become the mileposts by which you judge your progress. They are regular points of data that you use to chart the fight against your disease. You have cycles of drug taking, cycles of side effects and cycles of results that mark your life. Missing test results have a serious psychological effect on your treatment in the same way that missing drug doses have a serious physical effect. This was the week I was going to celebrate (or weep with fear that the chemotherapy wasn’t going to be effective). Instead I am left hanging for another two weeks until I find out whether it’s hope or fear.
On the bright side, the Giants won the Western Division today and are going to the post-season. So life really is good after all…
I take the envelope into the house, tear it open and scan down the page past the white and red blood cell results to the RNA quantitative numbers. There I see this statement: “test cancelled, coding error, resubmitted to LIS.” I have been either in the RO5024048 study or in Standard of Care chemotherapy for 10 months. During that time I have had over 40 separate blood draws with hundreds of tests done on the blood. Never during all that has a test failed, been cancelled or had faulty results. But this week, when I may see the result I have been waiting for since I got bounced out of the study by the viral breakthrough, something was wrong with either the blood or the test. To say it is torture would be an insult to those who have actually undergone torture, but mental agony, yes indeed.
I will call my nurse on Monday to check if the test was redone and there are any updated results, but I have the sickening feeling that I won’t see any updated viral load numbers until the results of the test scheduled for this coming Wednesday come back in a couple of weeks.
When you are in chemotherapy your focus tends to narrow. Test results become the mileposts by which you judge your progress. They are regular points of data that you use to chart the fight against your disease. You have cycles of drug taking, cycles of side effects and cycles of results that mark your life. Missing test results have a serious psychological effect on your treatment in the same way that missing drug doses have a serious physical effect. This was the week I was going to celebrate (or weep with fear that the chemotherapy wasn’t going to be effective). Instead I am left hanging for another two weeks until I find out whether it’s hope or fear.
On the bright side, the Giants won the Western Division today and are going to the post-season. So life really is good after all…
Friday, October 1, 2010
The End Of The Season – Baseball, That Is.
Fantasy Team Disappoints, Actual Baseball Exhilarates
The Vincent Black Shadows, a fantasy baseball franchise operated by your correspondent for the past 25 years in five different fantasy leagues in three different cities in two different time zones, are limping to a sixth place finish in the Tri-Tip League of Santa Barbara. It was a year that saw the team crippled by injuries, players traded out of the National League and players underachieving due to sloth, pigheadedness and the insistence of playing while injured.
The Shadows pitching staff was particularly disappointing. Young pitchers failed to develop (Paul Maholm, Chris Volstad). Veterans regressed (Aaron Harang, David Bush). Speculative signings failed to pan out (Sean Gallagher, Sammy Gervacio).
The position player side of the roster entered the season weak in power hitting. My plan to leverage my excellent farm system (Starlin Castro, Jose Tabata, Devaris Gordon) as trade bait to acquire sluggers from other teams was scotched by the unexpected early promotions of Castro and Tabata to the big leagues. Adding to my loss of trade leverage were injuries to two key players (John Baker, Mark DeRosa) and the trade to the American League of another (Conor Jackson) leaving my team with holes I could not fill.
Even with this bad luck, I was still in the hunt until late July. I was unable to negotiate the needed trades however, and even my prescient signing of new Milwaukee closer John Axford and the late season additions of Kevin Corriea and Joe Blanton could not generate the necessary momentum for a run at the money. The foundation for next year’s team is very solid, but it is cold comfort indeed here at the tail end of my third year in a row finishing out of the money.
I like to think that the brain fog produced by Hep C and interferon contributed to the Shadow’s disappointing season by impairing the decisions made by the team’s “baseball people.” In fact, now that I think of it, I went symptomatic right about the time that the Shadow’s began their decline…
Major League baseball, on the other hand, has been a delight. My old home team, the Twins are in the playoffs, the Texas Rangers managed by one of my favorite people in baseball, Ron Washington are in the playoffs and Your San Francisco Giants, with a win tonight against the Padres, will win the National League Western Division Championship. The postseason is almost upon us and I have several rooting interests and a friend who has scrambled around and secured tickets.
I am optimistically awaiting my latest viral load results, and the Giant’s game is starting up on the TV and life is good enough for now…
The Vincent Black Shadows, a fantasy baseball franchise operated by your correspondent for the past 25 years in five different fantasy leagues in three different cities in two different time zones, are limping to a sixth place finish in the Tri-Tip League of Santa Barbara. It was a year that saw the team crippled by injuries, players traded out of the National League and players underachieving due to sloth, pigheadedness and the insistence of playing while injured.
The Shadows pitching staff was particularly disappointing. Young pitchers failed to develop (Paul Maholm, Chris Volstad). Veterans regressed (Aaron Harang, David Bush). Speculative signings failed to pan out (Sean Gallagher, Sammy Gervacio).
The position player side of the roster entered the season weak in power hitting. My plan to leverage my excellent farm system (Starlin Castro, Jose Tabata, Devaris Gordon) as trade bait to acquire sluggers from other teams was scotched by the unexpected early promotions of Castro and Tabata to the big leagues. Adding to my loss of trade leverage were injuries to two key players (John Baker, Mark DeRosa) and the trade to the American League of another (Conor Jackson) leaving my team with holes I could not fill.
Even with this bad luck, I was still in the hunt until late July. I was unable to negotiate the needed trades however, and even my prescient signing of new Milwaukee closer John Axford and the late season additions of Kevin Corriea and Joe Blanton could not generate the necessary momentum for a run at the money. The foundation for next year’s team is very solid, but it is cold comfort indeed here at the tail end of my third year in a row finishing out of the money.
I like to think that the brain fog produced by Hep C and interferon contributed to the Shadow’s disappointing season by impairing the decisions made by the team’s “baseball people.” In fact, now that I think of it, I went symptomatic right about the time that the Shadow’s began their decline…
Major League baseball, on the other hand, has been a delight. My old home team, the Twins are in the playoffs, the Texas Rangers managed by one of my favorite people in baseball, Ron Washington are in the playoffs and Your San Francisco Giants, with a win tonight against the Padres, will win the National League Western Division Championship. The postseason is almost upon us and I have several rooting interests and a friend who has scrambled around and secured tickets.
I am optimistically awaiting my latest viral load results, and the Giant’s game is starting up on the TV and life is good enough for now…
Monday, September 27, 2010
Less Anger, More Irritation
Today was more placid than the past several days. The book sale was over save for the cleanup. We made more money than we projected we would. Even though not nearly enough people showed up to help with the load out, it still managed to get done without driving any of us to total exhaustion. Close, but not quite all the way there.
The inner dialogue today was primarily one of irritation and disgust instead of rage and fury. That is a big win from my perspective. Even though none of the dialogue ever reaches spoken form to be judged by others hearing it, it still makes me feel better that, were it to slip out, it would not sound quite so insane as it would have this past weekend.
I still set up an appointment with the difficult Dr. K, my primary care guy to sort out the thyroid situation, as it could not hurt to know the score on those meds. He can check assorted plumbing as well so we will all know just how things look from the bottom up.
Still keeping the knives sequestered and the ammo separated from the firearms by stairs, but the trigger finger is much less itchy today…
The inner dialogue today was primarily one of irritation and disgust instead of rage and fury. That is a big win from my perspective. Even though none of the dialogue ever reaches spoken form to be judged by others hearing it, it still makes me feel better that, were it to slip out, it would not sound quite so insane as it would have this past weekend.
I still set up an appointment with the difficult Dr. K, my primary care guy to sort out the thyroid situation, as it could not hurt to know the score on those meds. He can check assorted plumbing as well so we will all know just how things look from the bottom up.
Still keeping the knives sequestered and the ammo separated from the firearms by stairs, but the trigger finger is much less itchy today…
Sunday, September 26, 2010
Anger Management Revisited
I have noticed that anger management issues are cropping up once again as my chemotherapy drags on. In an earlier post, I talked about the first bout of it I had several weeks into the RO5024048 study. It’s coming back again, though with a decidedly different twist. I am not having problems dealing directly with irritating people, but I am having extended arguments with them in my head. I think this could be attributed to one of two side effects or a third cause that is due my current circumstances.
The first would be depression. I am on Celexa and do not feel that I am depressed. I remember what I felt like before I started on the antidepressants and this doesn’t feel like that. I am a bit tenser than I have been and I have a theory about that I am going to check out this week. I noticed that once I started on levothyroxine for my low thyroid function, I became more jittery than I had been before. There was a bit of an adjustment period when I started on antidepressants but that had leveled out a bit by the time I started on the thyroid meds. I then noticed a definite step up in nervousness when I started taking the thyroid meds. I wonder if my thyroid is working better now and my dose is too high and whether the thyroid meds might be interacting with the antidepressants to make me a bit too edgy. I am calling my primary care doctor tomorrow to set up an appointment to test my thyroid hormone levels and perhaps adjust my dose.
The second possibility is the mental problems that can be caused by interferon and ribavirin themselves. It is a known side effect of this combination of drugs that can include irritability, depression, aggressive behavior, suicidal behavior and suicidal or homicidal thoughts. I have not been thinking about killing myself or anyone else. I have indeed thought about letting a few individuals know what I really think about their attitude and behavior and doing it in no uncertain terms. I have imagined these (admittedly one-sided) conversations in vivid detail. I have not, however, actually done any of this and I have not noticed that my behavior towards others has become more aggressive. I am trying to keep a close watch on this and am going to wait for the results of the thyroid tests and any dose adjustments before I address the issue of whether my antidepressants need to be adjusted.
I do note that my behavior has become more decisive, but no one has mentioned that I have been abusive or angry toward them, and I have been asking for feedback if that happens. I find that in situations start to degenerate into indecisive dithering, I am becoming more apt to step in and tell people what to do. This does not seem to me to fall under aggressive behavior in the way they mean in the side effects description, but I am definitely wary of my reactions and behavior.
The third possibility is that some of this is the result of a long hard seven days of dealing with our organization’s biggest event of the year. I have been working longer hours than usual, in more crowded and chaotic circumstances than usual, doing more stressful work than usual. There is nothing like dealing with the sort of obsessive, picky and occasionally barking mad people that populate a used book sale to drive stress levels to the stratosphere. I don’t believe it is entirely due to this circumstance that I am noticing my inner dialogue moving more to “that stupid little prick” sorts of expressions than usual, but it must have something to do with it.
So until I get to see all my doctors about my meds, the knives stay in the drawers and the guns and ammunition on separate floors of the house…
The first would be depression. I am on Celexa and do not feel that I am depressed. I remember what I felt like before I started on the antidepressants and this doesn’t feel like that. I am a bit tenser than I have been and I have a theory about that I am going to check out this week. I noticed that once I started on levothyroxine for my low thyroid function, I became more jittery than I had been before. There was a bit of an adjustment period when I started on antidepressants but that had leveled out a bit by the time I started on the thyroid meds. I then noticed a definite step up in nervousness when I started taking the thyroid meds. I wonder if my thyroid is working better now and my dose is too high and whether the thyroid meds might be interacting with the antidepressants to make me a bit too edgy. I am calling my primary care doctor tomorrow to set up an appointment to test my thyroid hormone levels and perhaps adjust my dose.
The second possibility is the mental problems that can be caused by interferon and ribavirin themselves. It is a known side effect of this combination of drugs that can include irritability, depression, aggressive behavior, suicidal behavior and suicidal or homicidal thoughts. I have not been thinking about killing myself or anyone else. I have indeed thought about letting a few individuals know what I really think about their attitude and behavior and doing it in no uncertain terms. I have imagined these (admittedly one-sided) conversations in vivid detail. I have not, however, actually done any of this and I have not noticed that my behavior towards others has become more aggressive. I am trying to keep a close watch on this and am going to wait for the results of the thyroid tests and any dose adjustments before I address the issue of whether my antidepressants need to be adjusted.
I do note that my behavior has become more decisive, but no one has mentioned that I have been abusive or angry toward them, and I have been asking for feedback if that happens. I find that in situations start to degenerate into indecisive dithering, I am becoming more apt to step in and tell people what to do. This does not seem to me to fall under aggressive behavior in the way they mean in the side effects description, but I am definitely wary of my reactions and behavior.
The third possibility is that some of this is the result of a long hard seven days of dealing with our organization’s biggest event of the year. I have been working longer hours than usual, in more crowded and chaotic circumstances than usual, doing more stressful work than usual. There is nothing like dealing with the sort of obsessive, picky and occasionally barking mad people that populate a used book sale to drive stress levels to the stratosphere. I don’t believe it is entirely due to this circumstance that I am noticing my inner dialogue moving more to “that stupid little prick” sorts of expressions than usual, but it must have something to do with it.
So until I get to see all my doctors about my meds, the knives stay in the drawers and the guns and ammunition on separate floors of the house…
Wednesday, September 22, 2010
Brain Fog x Fatigue = Say What?
The longer one takes interferon, the more significant the cognitive and memory deficits become. It’s a gradual process whose creeping nature means that you some definite “oh crap,” moments can pop up and catch you unawares. The farther into a task you go in any one day, the more like you are to be hit with a OC moment.
The organization I work for puts on a big used book sale every year. Picture a large airplane hanger with 550 banquet tables and 400,000 books open for sale for 5 days to a total of 12,000 customers. This requires some high level organization to pull off successfully, which is why the people who know us are annually astonished that we can do it.
It also means an early start the first day to make sure the logistics are all mapped out (literally) before the army of volunteers and the truckloads of tables and books start to arrive. I was there at 6:30 a.m. to mark out the floor of the hangar for table and book placement. This involves chalk, long tape measures and lots of walking; as in 20 trips up and down the 600 foot building and lots of side-to-side walking, and conferences, and rechecking, etc. By about 10:00 a.m, my dogs were barking and my brain was fogging. I noticed that I was having trouble reading my map and making calculations on my tape measure. I had to mark a 48-foot length of tables on the floor and I was standing at the 59 foot mark on my tape measure. I could not for the life of my figure out that 59 plus 48 equals 107 feet. I made enough wrong marks on the floor (which I did a bad job of scuffing out) that the volunteers had to track me down and make me show them where the damn tables were supposed to go. Suddenly, I just couldn’t think clearly. Taking a break helped a bit as did water, a snack and periodic rests, but once the brain fog started, the rest of the day was not a good one for our hero.
Twelve hours of sleep helped, but another long day the next day meant that I needed another ten hours of sleep today, a three hour nap in the afternoon and restricting myself to menial tasks around the house. Ten hours more tonight and I should be ready to exhaust myself again tomorrow.
Of course I will be most aware of my situation and be extra careful to rest adequately and not overextend myself in stressful situations, of course…
The organization I work for puts on a big used book sale every year. Picture a large airplane hanger with 550 banquet tables and 400,000 books open for sale for 5 days to a total of 12,000 customers. This requires some high level organization to pull off successfully, which is why the people who know us are annually astonished that we can do it.
It also means an early start the first day to make sure the logistics are all mapped out (literally) before the army of volunteers and the truckloads of tables and books start to arrive. I was there at 6:30 a.m. to mark out the floor of the hangar for table and book placement. This involves chalk, long tape measures and lots of walking; as in 20 trips up and down the 600 foot building and lots of side-to-side walking, and conferences, and rechecking, etc. By about 10:00 a.m, my dogs were barking and my brain was fogging. I noticed that I was having trouble reading my map and making calculations on my tape measure. I had to mark a 48-foot length of tables on the floor and I was standing at the 59 foot mark on my tape measure. I could not for the life of my figure out that 59 plus 48 equals 107 feet. I made enough wrong marks on the floor (which I did a bad job of scuffing out) that the volunteers had to track me down and make me show them where the damn tables were supposed to go. Suddenly, I just couldn’t think clearly. Taking a break helped a bit as did water, a snack and periodic rests, but once the brain fog started, the rest of the day was not a good one for our hero.
Twelve hours of sleep helped, but another long day the next day meant that I needed another ten hours of sleep today, a three hour nap in the afternoon and restricting myself to menial tasks around the house. Ten hours more tonight and I should be ready to exhaust myself again tomorrow.
Of course I will be most aware of my situation and be extra careful to rest adequately and not overextend myself in stressful situations, of course…
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