Earlier today, the IV injected me with my latest maintenance round of Rituximab. When speaking to my oncologist, she noted it was a year ago that I had my first round of maintenance. That means I am technically halfway through my maintenance experience. In this post, I will briefly summarize how my last year of maintenance has gone.
Today was once again a non-event. There was one highlight. Since my wife is working at the tax office, she was not able to bring me to today’s infusion. Instead, I was fortunate to hang out with a friend who was generous to bring me. Well, at least for the parts I was able to stay awake.
I did speak with my oncology doctor, and she let me know my hemoglobin numbers are concerning. Later this week I will post about that. There are some changes I’m probably going to have to work harder on specific life changes. She also talked about my short term memory issues and said if they continue or become dangerous (such as when driving), we may look at other options.
There was one significant change today compared to other maintenance infusions. To get into town this morning, I had to drive through whiteout blizzard conditions. I did not want my friend to do that to bring me home. So instead of resting at home like I usually would, I am now at the office working. Well, not working since I am a little dizzy when moving around. But, I can write, and so I thought a blog post or two on my various blogs was in order. I am happy I don’t have brain fog as bad as while I was going through full chemo.
Happy to be halfway through
I am thrilled to be halfway through maintenance. While I have had some side-effects, I don’t see any of them as being deal-breakers. Short-term memory loss is concerning. But that seems to ebb and flow alongside maintenance infusions. And I don’t mind the “wrong” feeling that occurs after each maintenance cycle. I will put up with these mild side-effects if it means more time with my wife and kids! But I will say I am also delighted that I am now on the downhill side of maintenance infusions.
Song of the day: One Year of Love
I’ve been in a real Queen mood lately. When writing a post about being on maintenance for one year, this classic Queen song came to mind. And actually, it is the love for my wife and kids that is making me want to do maintenance.
Bonus Song: Me & Paul
Today’s bonus song has nothing to with today’s post.
Earlier this week Paul English died. He was the legendary drummer for Willie Nelson and quite an interesting character. The track Me & Paul by Willie Nelson chronicles some of the adventures the two artists had together. RIP Paul English.
Actually as I contemplate the lyrics of this classic song I think maybe the song is related to today’s post:
It’s been rough and rocky traveling But I’m finally standing upright on the ground After taking several readings I’m surprised to find my mind’s still fairly sound
A loyal reader of the blog asked if I would do a post about whether I drank alcohol while I went through chemotherapy. The short answer for me is no. But this wouldn’t be much of a blog if I gave quick answers! In this post, I will explain why I didn’t drink during chemo and what I can drink now that I am on maintenance infusions. Further, I should note that most other chemo patients I’ve spoken to about this topic seem to have different answers about whether they do or don’t drink while going through treatment.
My alcohol use before chemo
I should probably briefly mention first that I did very little alcohol drinking in the year leading up to chemo. At the time I didn’t know I had cancer, but I knew there was something very wrong with me. I had problems breathing and was seeing doctors for what was suspected to be a pulmonary issue. At that time I could not drink beer at all. I would get an upset stomach with just one beer. If I had more than one beer my stomach would start to hurt badly. I could drink liquors such as my drink of choice whiskey. But even then I drank very little because of very low energy levels.
No alcohol use during chemo
While going through R-CHOP chemo, I did not even try any alcohol, whether it be beer or liquor. I don’t believe the oncologist said I couldn’t. Basically, I didn’t feel like drinking alcohol. The fatigue and other symptoms I generally felt didn’t leave me feeling like I could drink alcohol.
Out of curiosity, I just looked in the “Guide to Chemotherapy” given to me by the oncology staff. In there it says:
Small amounts of alcohol can help you relax and increase your appetite. But alcohol may interact with some drugs so that they don’t work as well, or it may make the side effects worse. Be sure to ask your doctor if you can drink beer, wine, or any other alcoholic beverages.
A Guide to Chemotherapy by American Cancer Society
My advice to anyone wanting to drink alcohol while going through chemo is to speak to your oncologist beforehand.
Alcohol use now that I’m on maintenance infusions
I have been on maintenance therapy infusions of Rituximab for about a year now. After about two months of being on maintenance infusions, I did try drinking alcohol again. First, I tried a beer. Not only did it still impact my stomach, but it seemed worse than before. After drinking half a beer, my stomach started to hurt badly. I don’t know if it is a side-effect from chemo, a side-effect from maintenance, or a side-effect of something else I don’t know I have. No matter what the leading cause is, I’ve decided not to try beer again any time soon!
Now liquor I’ve found doesn’t impact my stomach. I don’t appear to have any adverse side-effects from drinking whiskey, rum, or vodka. Actually, I seem to have some pretty good tolerance for drinking liquor, probably due to the weight gain I experienced during chemo. Generally, I don’t drink more than a couple of mixed drinks. But I have found I can drink quite a lot without adverse effects.
If in doubt I would ask a doctor
For anyone reading this wondering if they can or can’t drink alcohol while going through chemo or maintenance, I would say to ask your doctor. Speaking for myself, I haven’t read anything that authoritatively says alcohol use should be avoided. But I know many of the drugs we take are hard on the liver and kidney; therefore, they may interact poorly with alcohol. At the same time, however, life is short! It seems even shorter when you have a cancer diagnosis.
Song of the Day: Mas Tequila
When thinking of liquor, the first thing that came to mind is this excellent party song from Sammy Hagar. Personally, I’m not a fan of Tequila, but I love the heck out of this song.
Bonus Song: Whiskey in the Jar
The Thin Lizzy version of this classic Irish drinking song is one of my favorite songs to listen to at the bar. Actually, I tend to sing along as well when I’ve had a whiskey or two. I also happen to love the Metallica version of this song, but the Thin Lizzy version is still the best, in my opinion.
Bonus Bonus Song: Friends in Low Places
This Garth Brooks song is probably one of the greatest songs to sing with a group at the bar. A drinking bingo night the wife and I went to was basically shut down for almost ten minutes while the bar sang this song. That was a good night…
Yesterday I was supposed to have my latest maintenance infusion of Rituxan (Rituximab). That did not happen after consulting with the oncology CNP and oncologist. My memory issues have not improved, and they decided to schedule an MRI for me instead. In this post, I will briefly discuss my memory loss and upcoming MRI.
Memory loss is not improving.
I’ve noticed memory loss issues for quite a while now. Over a year ago, I mentioned it in my post about brain fog (chemo brain). Since that time, my short-term memory problems have not improved. I think they have become worse. It has gotten to the point where my kids don’t even like to tell me about anything coming up because they figure I will forget it anyhow.
My memory loss has also become one of the reasons I try to avoid too many people. It gets frustrating trying to talk to people with the knowledge that I might be forgetting conversations from earlier. I’ve turned in to the person that repeats the same story over and over again. Even worse, I’ve become the person that can’t be trusted to remember anything. It gets quite frustrating.
Nothing seems to work for improving memory loss.
I’ve noted before that playing logic games helps out with the thinking portion of brain fog. Sometimes the fog is so thick I can’t write a single blog post. But after playing logic and brain games for a little while, the mist will open up enough for me to think straight. As far as I can tell, playing games does not help with my memory loss. I’ve also tried memory and other brain games. Nothing seems to work.
Of course, part of the problem is I don’t know just how often I am suffering from memory loss. There are times where friends or family members will bring it to my attention. And of course, there are times I am sitting somewhere trying to remember what I was going to do. But I can’t help but wonder how often I am experiencing short-term memory loss and don’t realize. How am I supposed to know I forgot something if I don’t remember there was something to forget?
I am getting an MRI of the brain.
When I had my consult with the oncology CNP yesterday, I brought this up. My wife was there back up what I was telling the CNP. I think my wife is even more worried about my memory issues than I am. It can’t be easy for her to be married to someone going through memory issues.
The CNP and oncologist met about my memory loss and decided against having me take my Rituxan infusion. Instead, I would be scheduled for an MRI of the brain. They want to try to narrow down what is causing the memory loss. This short-term memory loss could still be part of my brain fog from going through chemo last year. It could also be a side-effect of the Rituximab.
There are other possibilities unrelated to chemo that could be causing my memory loss. It is possible cancer has spread into my brain and is causing issues. I doubt this is the issue, but it is a possibility. There are also possibilities I can’t think of, which an MRI may be able to spot. I believe the main reason I’m getting an MRI is to make sure these other possibilities are not causing my memory loss.
MRI on Monday
My MRI is scheduled for Monday morning. Some date after that I will have an appointment with a neurologist as well. I’m not nervous about either appointment. Personally, I think my short-term memory loss is still a side effect of the brain fog caused by chemo. But I have researched enough cancer stories now to know that there are other possibilities, and I suppose it isn’t a bad thing getting more information about my brain health.
PS. I also found out I will be taking my port out. But that is a post for another day.
Song of the Day – Let’s Make a Memory
Talking about memories brings this classic Roy Orbison song to mind.
Bonus Song: Check My Brain
The bonus song is a little harder rock than I usually post on this page. I can’t help but think of this Alice in Chains song when thinking about going through a brain scan.
Two days ago I had my fifth round maintenance therapy. I’ve had some followers of the blog ask me to write about my latest round. They wish for me to compare my current experience to that of my first round. Hopefully sharing this will give those going through maintenance, and family members of those going through maintenance, an idea of what ongoing treatments are like.
Maintenance always starts with a vitals check.
Every maintenance always begins the same way. The nurse will check my weight. This part of maintenance is the part I dread the most. While going through chemo, I gained a lot of weight. Going through maintenance, I have been unable to lose much of that increased weight. I know I should be happy due to the number of people who suffer massive weight loss. But this is still one of my most significant stresses, and no matter how much I try, it doesn’t seem I can lose weight.
The nurse then brings me into a room and checks my vitals. My blood pressure, oxygen, and temperature are the main vitals checked by the nurse. I never really worry about this part. My vitals are usually right in the range they need to be. Actually I this part of the appointment annoys my wife. She has high blood pressure and has never had readings as good as mine.
During the previous round of maintenance, my port worked with no problems. This past success led me to believe the port would have issues this time. What I mean by the port having issues is that blood will not ‘return’ when the nurse tries to draw blood through the port. Any time the port doesn’t work, I have to sit in weird positions and move my arms and neck around in the hope that blood will return through the port. Sometimes that works. If not, I get about a dozen syringes of a cleaner sent through the port to open it up. That usually eventually works. But it takes a lot of time, and each time the port doesn’t work I want to have the dang thing taken out and use a regular IV for now on. Technically since I am no longer doing regular chemo, I no longer need the port. It is just a lot more convenient to use than an IV.
As luck would have it though, my port worked! This was two times in a row my port worked with no issues. Maybe my port knew I was looking to get rid of it and decided its time to behave. It is quite possible the retraction that had been there has disappeared completely. Whatever the reason my port is now functioning properly. The nurse was able to draw blood with no problems.
As luck would have it though, my port worked! Two times in a row my port worked with no issues! Maybe my port knew I was looking to get rid of it and decided its time to behave. The retraction that had been there may have disappeared altogether. For whatever reason, my port is now functioning correctly. The nurse was able to draw blood with no problems.
Time to visit with the nurse.
After the blood draw, there is a wait while the lab does its testing to make sure I can receive my maintenance infusion. During that time I meet with either the oncologist or the CNP. Both of them have my utmost respect and trust. In this case it was the CNP’s turn to try getting the truth out of me. I say that because I don’t always mention all of my symptoms. During those times, my wife will pipe in and happily let the nurse or doctor know what I had failed to say.
During this visit, I let the CNP know my symptoms after the previous round. MY latest symptoms include a couple of days of absolutely no sleep; which was likely caused by the steroids. Then I would have a flu-like feeling throughout my body for about a week or two. For the rest of the eight weeks I would have low energy and a constant cough. The low energy and cough seem to get better the week before getting my next maintenance infusion.
After letting the CNP know I hadn’t had any other notable event, my wife spoke up. She mentioned a few weeks ago that I had banged my heel very hard and that I had possibly broken it. I explained I don’t think it had broken, just very badly bruised. Neither my wife or the CNP seemed impressed that I failed to have it checked out. But having enough of these types of injuries, I already knew what I had to do. Plus, I have had so many scans over the last year I didn’t want another x-ray. I will admit though; my heel hurt pretty badly this previous weekend walking around the convention center in Sioux Falls all day every day.
The nurse then talked to me about my sleeping issues. I won’t go into that in this post and will instead do a separate post about it in the future.
A surprise visit from the oncologist.
I usually don’t see the CNP and Oncologist during the same appointment. In this case, the oncologist came in to let me know my numbers had mostly looked good from the blood draw. She has concerns that my hemoglobin continues to go higher each appointment. My rising hemoglobin counts will be another topic I will save for a future post.
It is also possible the oncologist made an appearance because I had a camera crew following me this day, and they wanted to have her in some of the video footage. I had a camera crew with me to shoot a marketing piece for the hospital. Since I am so open about my experience on this blog, I had no problems letting them film me.
Time for the pretreatment drugs.
After the initial vital checks and interrogations, I am then led to an infusion room. These pretreatment drugs are used to prevent the normal reactions many patients have while receiving the maintenance drug Rituximab (Rituxin). First, I am given two Tylenol caplets and injected with Benadryl through my port. A saline bag is started and will continue to drip for the rest of the appointment, and I receive a small pretreatment bag of steroids via my port. Most people who use the Tylenol, Benadryl, and steroid mix seem to have few if any issues going through maintenance.
My vitals are rechecked before proceeding with the actual maintenance infusion. IT is at this point I start getting very tired. Apparently I am very susceptible to the “may cause drowsiness” portion of Benadryl. The rest of the appointment goes very quickly for me because I am going in an out of sleep.
Finally, the actual infusion of Rituxin
At this point, I finally receive my infusion of Rituxin. The infusion is split into two steps. First, they drip the Rituxin into my port slowly for a half hour. By going slow, any allergic reactions can be observed and dealt with immediately. A nurse will also recheck my vitals to ensure nothing is going wrong. As usual, there are no problems with this initial injection of Rituxin.
The rest of the Rituxin bag is then infused into my port over the next hour. I rarely remember this portion of maintenance due to the Benadryl. This time, in particular, it felt like about five minutes instead of a full hour. I don’t remember it this time, but I know they also check my vitals one last time. My vitals must have been OK because I was then released.
As usual, maintenance was a nonevent.
Maintenance day is pretty boring. Usually, it is just my vitals getting checked a lot, speaking with the oncologist or CNP, and then having all the drugs forced into my body. Part of me is happy maintenance is a nonevent. I’ve spoken with patients that had terrible reactions to Rituxin. The worse case I’ve heard of was a cancer patient whose throat closed, and heart started beating irregularly. Luckily nothing like that has happened to me when receiving Rituxin.
Hopefully, sharing this will alleviate any of the fears for other people who are about to go through maintenance. For most people, it is a nonevent. The only person I think maintenance treatment is hard on is the loved one that comes along for the appointment. In this case, my wife is the loved one there with me and watching over me as I sleep through the infusion.
Song of the day.
Today’s song is only marginally related to the post. When I writing about a possible broken bone the line ” Muscle and blood and skin and bones” came to my mind. I love this classic song from Tennessee Ernie Ford. Luckily I am now self-employed so I don’t have to worry about owing my soul to the company store..
My song of the day really had nothing to do with today’s post. So I thought I would make my second song even less related to today’s. The Highwaymen is the greatest super-group ever to have been assembled and this song was their crowning achievement. Even though this song isn’t related I often find myself singing this song. In particular I will sing “But I am still alive”. Actually, maybe this song is related…
A constant theme from my cancer experience has been a lack of quality sleep. The lack of sleep has definitely impacted my personal and professional life immensely. Actually the reason I haven’t really blogged in the last few weeks is because I have felt too tired to do so (of course the other reason is I am working on creating a new podcast and a new video series). In this post I will briefly explain my current sleep habits. Later this week I will highlight how my personal and professional life has been impacted. Sharing this may help some other cancer patients in similar situations understand they are not alone.
Current sleep status (or lack of sleep status)
Currently I get only about three to four hours of sleep a night. Additionally, each week I will go one or two nights with no sleep at all. My current sleep issues seem to stem from multiple causes. First, I seem to have lost the ability to fall asleep. And secondly, I have a cough that won’t go away; which in turn wakes me up if I do happen to fall asleep.
As to not being able to fall asleep I have tried many cures. People have shared with me what works for them and I have tried almost everything that has been suggested. The only real thing that seems to work is to become so exhausted that my body has no choice other than to fall asleep. Part of me believes I also have problems going to sleep because I know I will be up shortly anyhow, so why bother trying.
Which leads to my cough. Since being on chemo, and now Rituximab (my maintenance drug), I have a cough that won’t go away. Sometimes I can go up to an hour without coughing. Then at other times I cough at least every five minutes. Laying down seems to make the coughing worse. Due to this I now sleep on a recliner, so I can keep my head and chest higher. This doesn’t really seem to help much at all. But I continue to do so because I feel I keep my wife awake all night when I sleep in the bed. I’m probably going to give up on the recliner idea and go back to sleeping in bed however. I fear if I spend too much time away from the bedroom it will make my wife feel she is somehow to blame; which is completely the wrong signal I want to send.
Results from the pulmonary doctor
I have gone through two sleep studies. Recently I had an appointment with my pulmonary doctor about my cough and sleep study results. He noted that on average I get about 9 non-breathing events per hour going through the sleep study. However when I entered REM sleep I would get about 66 non-breathing events per hour. He noted this is very dangerous and is the reason I was prescribed a CPAP. Since staring to use the CPAP he has noted I only get a few non-breathing events per hour, that is whether or not I am in REM sleep. So the CPAP seems to be doing what it is supposed to. But at the same time it has not fixed my other sleeping issues, other than to make sure I stay in REM sleep a little longer. I will admit I do feel better rested using the CPAP, even if the overall amount of sleep I get is not much longer.
Other than the breathing while sleeping, none of the tests or scans ordered by the pulmonary doctor have yielded any results. There are some minor lung issues that have to do with being a lifelong smoker. But nothing he is seeing would explain my constant cough.
Currently I believe the cough is just a side-effect of the maintenance drug Rituximab that gets infused into my body every eight weeks. Actually for about two weeks leading up to my maintenance infusions the coughing does seem to become less. Then about five days after my infusions the cough begins to get worse. I have spoken with other cancer patients who are experiencing the same side-effect with Rituximab. Since the maintenance infusions will likely keep me in remission longer, I guess I’ll just put up with this annoying side-effect.
Up next: how lack of sleep is impacting my life
In this post I briefly shared the current status of my sleeplessness. Later this week I will share how this lack of sleep is impacting my personal and professional life. This will likely be in two posts. Hopefully sharing my experience may help other cancer patients understand they are not alone. And maybe I’ll receive a sleep tip I haven’t tried yet that might actually work. I look forward to day when I am no longer tired of of being tired.
Song of the day
Today’s song really doesn’t have much to do with the bog post. Recently Ric Ocasek, lead singer for The Cars, died and I thought I would post one of my favorite songs from them. I’ve never been a huge fan of The Cars, but they definitely had some good songs. Plus I think this is great example of an 80’s music video.
The bonus song also has nothing to do with today’s post, other than the fact pulmonary doctors deal with lungs. This classic/weird song from Jethro Tull is just timeless. I like this version because I shows Ian Anderson in action.
Bonus, Bonus song
Jethro Tull has another song that comes to mind when talking about lungs and breathing. Plus this is another chance to see Ian Anderson in action.
Last week I was in the cancer center for my fourth infusion of Rituximab. This brings me up to half a year of being in remission. Since I did a post after my first round of maintenance infusions, I thought it would be appropriate to blog about the side-effects from this latest round.
Lack of sleep is still the main side-effect
My whole cancer experience has been an ongoing tale of sleeplessness. About a month ago I wrote about my sleep issues and included this chart showing how much sleep I get (or don’t get).
The above chart shows I really don’t get enough sleep. Now compare that to the chart below. This new chart shows all of last week and this week up until today (Friday):
It would appear I am getting more sleep by the pure numbers. My average seems to have increased to almost five hours per night. However that isn’t really true. My maintenance treatment was on the 7th of August. Notice how the 7th through the 10th (Saturday) have no sleep recorded. This was not a glitch of my fitbit. I really didn’t get any sleep those nights. Then for a few days I got very little sleep. Finally for the last two nights I got a good six hours. This has been great getting that much sleep, but I know it is probably unlikely to happen a third night in a row. Plus I didn’t have any sleep at all on Wednesday, which was prior to my two good nights of sleep.
My wife will probably read this and think “but I remember him sleeping those nights”. Well, no, I wasn’t. I tried to sleep and acted like I was sleeping. Mostly it was in the hope that pretending to sleep would make actually fall asleep. It didn’t work. One morning when she was sneaking around hoping not to wake me I actually had some headphones on listening to a audio book. I was desperate and trying anything to get sleep.
I’ve tried many things to try getting sleep. But it seems that for about a week following maintenance treatment that my already poor sleep schedule will become even worse. To keep my spirits up I just keep in mind that maintenance treatments should keep me in remission longer. A little lack of sleep due to maintenance treatments is a small price to pay for keeping cancer at bay.
Getting irritated about my irritability
Just as with the first round of maintenance, during this round I experienced some definite irritability. I don’t know if it is due to the steroids I’m given, or the fact my body just doesn’t feel right. No matter what the cause it seems to get worse each round. I find myself spending the week after maintenance trying to avoid people so I don’t fly off the handle at anyone.
There have been a few times in the last week I wasn’t able to refrain from snapping at people. Unfortunately it is usually my wife or my boys that are the receiving end of my irritability. They will feel hurt afterwards and left wondering what they did wrong. In all reality they probably did nothing wrong. It was just me being irritable for no reason at all. Luckily I have a great family and they seem to forgive my sudden irritable outbursts.
Just not feeling right
I mentioned above that I just don’t feel right after maintenance. This is a hard one to explain. Part me feels like I have light, almost flu-like, symptoms going throughout my whole body. But even that isn’t the right description of how I feel. All I can say is that the week following maintenance I feel “wrong”. Somehow every part of my body feels like something is physically wrong. But there isn’t any pain or anything like that. Perhaps it is all in my mind. Luckily that side-effect seems to last just under a week.
A year and a half of maintenance infusions left.
Lack of sleep, irritability, and feeling “wrong” are the main side-effects of maintenance I seem to experience. Technically I am a quarter of the way through my maintenance infusions. That leaves me with a year and a half of infusions left to go. Yes, even with these side-effects I plan to continue maintenance therapy. I’ve blogged previously about why I decided to go ahead with maintenance therapy, and still believe it is the right thing to do. I’ll just continue to put up with any side-effects in the hope I can gain more quality time with my family.
Today’s song: Behind Blue Eyes
I’m a big fan of The Who. Quite often during the past week I’ve had these lyrics stuck in my head:
No one bites back as hard On their anger None of my pain and woe Can show through
Those lyrics seem to have taken on an extreme meaning for me the week following maintenance. My family and neighbors may think I snap a lot during this time, but they have no idea just how often I am biting my tongue to keep the anger from showing.
Bonus song: Who Are You
I thought sticking with The Who would be appropriate for this post. Actually I often ask myself this question after going into a fit of maintenance rage.
Bonus Bonus Song: Basket Case
This song keeps coming in my mind during maintenance week as well. Maybe I should talk my kids rock band into learning it. Its a great song, even if I’m not keeping it my head for the right reasons…
It has been just a little over a week and a half since I had my maintenance infusion of Rituximab. Overall I would say maintenance has gone well for me. But I have experienced some side-effects. In this post, I will share how the last week and a half has gone for me.
Lack of sleep is back in full force!
In the post about my maintenance treatment, I mentioned taking a four-hour nap afterward. Unfortunately, that seems to be about the longest I’ve slept over the last couple of weeks. That night I slept for only a couple of hours. At the time I hoped my lack of sleep was due to having taken such a long nap. I also believed the steroids given to me during the maintenance infusion might have caused the sleeplessness. Both of those reasons could have been true for that night, but wouldn’t explain my sleeplessness since.
Since maintenance I seem to get about three to four hours of sleep a night. Every four or five days I seem to sleep about six or seven hours, most likely my body trying to catch up on sleep. I did have sleep issues prior to maintenance, but at that time I was back up to five or six hours of sleep every night. It is possible my sleep apnea is getting worse. This week I actually go back for a second sleep study to get a CPAP machine set up in order to help me sleep. I’m not really looking forward to sleeping with a CPAP machine. But then if it actually helps me sleep better at night I’m all for it.
Irritability came back!
As part of maintenance therapy I was given a steroid. According to my chart, the steroid given to me via IV was dexamethasone sodium phosphate, also known as Hexadrol Phosphate. This was also the steroid used during my chemo infusions. The only difference between maintenance and chemo is that I no longer have to take the prednisone steroid. But just like during chemo I experience some extreme irritability for a couple of days.
Previously I blogged about the rage experienced while on prednisone. I was much less full of rage this time, but there was still a definite irritability. For a couple of days I seemed to get annoyed and almost angry every time the boys fought. As a parent I know the boys will fight for no reason at all. Yet on one of those days I had a large confrontation with my youngest son that left me apologizing to him for a couple of days. Hopefully the kids understand I was not quite myself on those days.
Since my last round of chemo, I have experienced the chills occasionally when going to bed. I hadn’t really thought too much of this due to the fact it is very cold outside and it didn’t last very long. On a typical night prior to maintenance I would experience the chills for about five to ten minutes. After maintenance therapy, I now experience the chills for about forty-five to sixty minutes per evening. The chills always seem to come when I am going to bed. Nothing I do seem to get rid of them.
I’ve spoken with other lymphoma patients that have experienced the chills after chemo is completed. There doesn’t seem to be a unifying reason as to why some of us experience the chills. One common reason given is that chemo causes early menopause. Since I am not a woman I don’t really think that applies to me. Part of me wonders if it is not due to the rituximab. Rituximab is the common drug I used both during chemo and during maintenance therapy. And the chills is a common side-effect of the drug. I’m hoping as time goes on this particular side-effect will either go away or at least get reduced.
Not a lot of side-effects
I don’t seem to have a lot of side-effects from maintenance therapy. The main side-effects I have is lack of sleep, irritability, and the chills. Overall I can live with these side-effects if it means maintenance therapy can keep my lymphoma at bay longer. Plus I hope that as maintenance therapy goes on my body will just adjust better and the side-effects will reduce each time.
Today’s song: I’ll Sleep When I’m Dead
Today’s song comes from Warren Zevon. This track is called I’ll sleep when I’m dead. Since getting lymphoma my wife doesn’t like me to use the phrase I’ll sleep when I’m dead, but I actually have used it many times over the years. The song has some obvious references to living life to its fullest. But at the same time there are references to being stretched a little thin. So much to relate to in this song, especially when experiencing sleep issues!
Bonus song: Poor Poor Pitiful Me
Actually, this song isn’t about me at all. My constant companion throughout chemo and maintenance is Lucy. She is a nine-year-old Yorkie and is always at my side! Of course, just like any other dog she thinks her life is so rough, and I often sing this Warren Zevon song to her.
Today I had my first round of maintenance therapy with Rituximab. This is the first of many infusions over the next two years; I will have these Rituxin infusions every eight weeks. Earlier this week I blogged about my reasoning for doing maintenance. For today’s post I thought I would share my maintenance day experience. Many of us going into maintenance for the first time wonder what it will be like and I hope sharing my experience will help others.
Pretreatment blood draw and vitals check
This visit began just the same as my chemo appointments. First I had to get a few vials of blood drawn. Actually the nurse assigned to me today is new to oncology floor, so she put in an order for the lab to come draw blood from my arm. I didn’t say anything. But as soon as the lab tech came into my room another nurse came in and said “Ken, you know better. We use your port.” So then the newer nurse got her first opportunity to insert the IV line into the port on my chest. She actually did really good. The port on my chest sticks way out, making it easy to see the three dots marking where the needle gets inserted. Most important, she stuck the needle in fast so it wouldn’t hurt, just a slight sting which I’ve gotten used to from doing chemo.
Once the port line was installed she couldn’t get a blood return right away. Oh no, I thought, my retracted port is back. My port seemed to work good for blood draws during my biopsy, so I thought any port issues were a thing of the past. Luckily after a couple of flushes the port was allowing blood to flow back into the syringe. The nurse was then able to fill all three blood vials with no problems.
Then, just as during chemo, my vitals were all checked. The only vital kinda off was my temperature. I was running a temp just over 99 degrees. I have a sick kid at home right now and it makes me wonder if I might get what he has; oh goody! My blood pressure was a little bit high for me at 122/80. I guess I was nervous about maintenance therapy.
After the blood tests were complete the CNP came in for a short visit. She let me know all my blood counts looked good. The only number that was very high was my glucose. I’ve been trying very hard to cut down on sugar. But it is hard! I’ll just have to try harder! It is especially true I need to cut out the sugars because I need to lose the weight I gained while on chemo. Steroids and I don’t mix well!
The CNP also passed on some good news from my oncologist. After looking at the bone marrow biopsy results she determined I wouldn’t need to do the bone marrow rebuilding medicine called Xgeva anymore. I am really glad to be done with that shot. I one time forgot to take Claritin when getting an Xgeva injection and it hurt so bad I thought I would need an ER visit. That is a good tip for anyone taking Xgeva or Neulasta shots: Claritin works!
The pretreatment drugs
Just as when I had chemo, I had to take certain drugs before I could actually get my Rituxmab infusion. First I had to take two Tylenol caplets. As I was taking my Tylenol something occurred to me: I hadn’t taken more than a few Tylenol or Ibuprofen for over a month! The pain I would experience over the last year seemed to have subsided down to almost nothing! I had gotten very used to pain over the last year, but somehow I missed out on the fact it was nearly gone.
Then I had the saline IV bag hooked up. That stays hooked up the whole time when receiving IV drugs. After the saline drip was started I was given a small bag of steroids. It took about twenty minutes for the steroid bag I believe. Part of me hoped I wouldn’t have to need steroids anymore. I know from past experience that steroids make me very hungry and moody.
Finally I had a shot of Benadryl injected into my IV line. During one of my chemo visits a nurse told me I only have a half does of Benadryl. I can’t imagine having a full dose. That half dose almost knocks me out instantly and I’m in a blur for the rest of the visit.
From the research I’ve done on chemo and maintenance treatment the trifecta use of Tylenol, steroids, and Benadryl will prevent most of the side-effects of Rituximab for most patients. Luckily that seems to be the case for me. If I would have started to show side effects the nurse let me know they would likely have increased the Benadryl dosage.
The actual Rituximab infusion
Honestly I don’t remember much of the infusion experience. Like I said above the Benadryl seems to put me in a daze. The actual infusion took 90 minutes. The nurses did a slower drip for the first half an hour to ensure I wouldn’t experience any nasty side-effects. Then it was put out much quicker for the last hour. One of the nurses confirmed I was getting the 1,000 mg bag of Rituxin; which is the same as I had during chemo.
The only real side-effect I experienced was a drop in blood pressure. This was the same thing that happened to me during chemo. I can’t remember what my last reading was, but I know my bottom number was 50. If that is the worse side-effect I’ll have from Rituximab I can live with that.
After maintenance I took a nap
Today my brother-in-law was gracious enough to be my driver (the wife and I work in a tax office, bad time of year for things like this). On the way home I was still in a Benadryl daze. I ate my lunch and planned to take a short nap. Four hours later I woke up and barely had time to get my middle child picked up from basketball practice. Luckily that nap had completely gotten rid of the daze. It just happened to be a bigger nap than I had planned on.
Maintenance was really kind of a non-event
Even though this post ended up being over 1000 words long, I can’t really say much actually happened during my maintenance treatment. In this post I basically shared the whole experience. Hopefully seeing how much of a non-experience maintenance was for me will help others going into maintenance treatment. Going into these situations for the first time can be stressful and learning how it goes for others can help.
Today’s Song: Carry on my Wayward Son
I had a surprise visit from my oldest Son visit today while receiving my Rituxin infusion. He happens to work in the kitchen at the hospital. It was truly great having him come by and say hello. As I think about him this classic song from Kansas comes to mind. As he is growing into quite the good young man I see him experiencing the same bouts of confusion and self-doubt we all went through at that age. He doesn’t realize how good of a person he is really is. This song explains that well:
Bonus Song: Dustin the Wind
This is one of those inside jokes for us. When Dustin was a kid he used to think Dust In the Wind was actually Dustin the Wind and ask me stop calling him the wind when I would sing it. This is a great live/unplugged version of the song.
Later this week I start my first round of maintenance therapy treatments. Choosing whether to actually do maintenance infusions was tough for me. I’ve spoken with other lymphoma cancer patients who also struggled with whether to do maintenance infusions. In this post I will briefly write about what maintenance is and why I am choosing to do maintenance.
Maintenance therapy is sometimes given after initial treatment has put the lymphoma into remission (no evidence of disease). It is used to make the remission last as long as possible by suppressing any lymphoma cells that can’t be detected by scans after the main treatment has finished.
Chemotherapy is sometimes used as maintenance therapy; however, immunotherapy (treatment with antibodies) is the most common type of maintenance therapy for people with lymphoma.
In my research I’ve found many studies that show maintenance therapy does extend remission for a good number of people. One things maintenance therapy does not do however is extend the expected lifespan of lymphoma patients. Basically maintenance therapy extends the time between the bigger treatment options, such as chemotherapy.
Rituximab is the maintenance therapy drug I’ll be using
Currently Rituximab is the standard drug used for maintenance therapy. This drug is a type of immunotherapy, which means it uses antibodies for treatment. In particular Rituximab is a monoclonal antibody. When writing about my chemo regiment R-CHOP I included this explanation of monoclonal antibodies from cancer research UK:
Monoclonal antibodies target proteins on the surface of cells. Rituximab targets a protein known as CD20. CD20 is found on white blood cells called B cells. It is the B cells that are cancerous in the most common type of non-Hodgkin lymphoma.
Rituximab attaches itself to the B cells and marks them. The cells of the immune system recognize the marked cells and kill them.
I still think it is a very cool concept that a persons own immune system can be used to target cancer cells. Technically this is already supposed to happen, but sometimes the immune system just doesn’t attack cancer like it is designed to. Theoretically maintenance therapy will keep the lymphoma at bay if it begins to spread again.
My particular maintenance plan is to have an infusion every eight weeks for the next two years. That is a lot of sessions. Good thing I have my port!
Maintenance therapy sounds like a good thing, but it has a downside
The concept of maintenance therapy sounds like something every lymphoma patient would want to go through. Being able to push another round of chemotherapy farther into the future is a good thing. But maintenance therapy does have its downsides as well. Actually some countries don’t even offer maintenance therapy due to these downsides and the fact it isn’t proven effective for enough people.
bloating or swelling of the face, arms, hands, lower legs, or feet
blood in the urine or stools
body aches or pain
burning or stinging of the skin
difficulty with breathing
dizziness, faintness, or lightheadedness when getting up suddenly from a lying or sitting position
flushed, dry skin
fruit-like breath odor
hives or welts, itching, rash
large, hive-like swelling on the face, eyelids, lips, tongue, throat, hands, legs, feet, or genitals
lower back or side pain
pain or tenderness around the eyes and cheekbones
painful cold sores or blisters on the lips, nose, eyes, or genitals
painful or difficult urination
pinpoint red spots on the skin
pounding in the ears
slow or fast heartbeat
sores, ulcers, or white spots in the mouth or on the lips
stuffy or runny nose
swelling of the tongue or throat
tightness of the chest
tingling of the hands or feet
troubled breathing with exertion
unusual bleeding or bruising
unusual tiredness or weakness
unusual weight gain or loss
For anyone curious, that was was 52 common side-effects listed. That doesn’t even include the less common side-effects or other possible side-effects which have yet to actually be linked to rituxumab.
I noted above Rituximab was part of my chemo treatment, being the R part of R-CHOP. My very first round of chemo infusion had to be split into two days. The main reason for doing so was because Rituximab had to be injected very slowly the first time to see if I would react badly to the drug. I’ve heard stories from many lymphoma patients that will experience major side-effects such as their throat closing or major nausea. Before even taking Rituximab a dose of Benadryl is given to the patient, and even that is not enough to hold off side-effects for many people.
At the same time I’ve the stories of many patients on maintenance who have developed long-term health issues because of these infusions. The tiredness and beat-down feeling that comes from chemo seems to be extended by many people taking maintenance therapy. Some patients going through maintenance therapy will get sick constantly and appear to have compromised immune systems. I was actually just speaking with someone that had to stop maintenance therapy after two sessions due to their inability to work anymore. Maintenance therapy is not chemo, but it can be just as damaging to the body for many lymphoma patients.
There are other maintenance therapy drugs out there now. Plus, more are currently being developed. So far I haven’t ready about any without major side-effects. It seems to be a matter of finding the maintenance drug with the least side-effects for a particular person.
So why am I doing maintenance
After going through some of the downsides to maintenance therapy it would seem that nobody would willingly choose to go this route. But just like anything in life it is important to weigh the positives and negatives. I won’t go any further into the negatives, since I think the above paragraphs covered some of those well enough. Instead now I would like to focus on the positives.
First, maintenance therapy does help many patients go longer without treatments such as chemo. It is true that not all patients get a longer remission. But enough patients do that I feel it is worth the risk. If maintenance therapy is able to push my next treatment years into the future I find it worth it. By that time it’s possible a cure could be found for lymphoma. Or even if a cure is not found there may be newer and less invasive treatment options available. There have been a lot of advances in the diagnosis and treatment of lymphoma over the last twenty years. I would expect the next twenty years to see advances we can’t even conceive of at this time.
Second, not all patients on maintenance experience major long-term side-effects. Yes, Rituximab is a nasty drug with some very bad side-effects. But not all patients have the same experience. If I find that I am starting to experience some of the side-effects I’ve read about or heard from other lymphoma patients I will simply end maintenance treatments. Once maintenance treatments begin there is nothing that forces anyone to continue maintenance therapy in the future. This is one area of healthcare where we the patients can actually have some control over our treatment.
Finally, the main reason I am choosing to do maintenance therapy is because of my family. I want to be around to help my kids grow. I want to be there for Ashton as he is going through diagnosis for his health issues. I want to go to Lawson’s baseball games and support him as he takes a continued interest in music and starting a rock band. I want to watch Dustin grow as a young man and smile as he makes the same mistakes we all made as young adults. I want to be there with Mindy experiencing this all together. I took a vow that included “until death do us part” and I plan to make that as far off in the future as possible.
Actually when I first mentioned I was questioning whether to have maintenance Mindy gave me “the look” and the looked like she was going to cry. She acted as if I just said I was wondering whether to keep living. That isn’t what I said or meant. But she seemed shocked and almost angry with me because I wasn’t sure if I wanted to do maintenance therapy. That look had a lot to do with my decision to go ahead with maintenance. If there is anything at all I can do to possibly extend time in remission I will do so. Mindy is truly my soulmate and I want to ensure we have as much time together as possible.
Wednesday is the day
This Wednesday is the day scheduled for my first maintenance therapy. I will admit to having a little bit of nervousness about receiving this infusion. But since I made it through R-CHOP mostly OK (I am still very tired and weak two months later) I feel that Rituximab infusions should go OK. I just keep focusing on the fact I am doing this to hopefully extend quality time with my family.
Today’s song – Just Fishin’
Being around for my family is a big reason I am choosing to do maintenance. I think the song Just Fishin’ sums up part of my reasoning very well. This song from Trace Adkins really shows what is important: spending time with family and creating great memories.
Bonus song – Cats in the cradle
The bonus song is one I’m sure everyone knows. Part of the reason I want to do maintenance is so I can do things like play catch with my boys. I look forward to the day when I sit back and think “he’d grown up just like me, my boy was just like me”.
Yesterday I had an appointment with my oncologist. Going into this appointment my wife and I were hoping to hear that I am in remission. We kinda heard that. So I am very happy to say that I in remission. In this post I’ll go further into why I say I kinda heard I am in remission.
During yesterday’s appointment the oncologist let my wife and I know the results of the biopsy tests. All but one of the tests had been completed. They all came back negative for active cancer. That is great news and theoretically I am now in remission. There is still one test she was waiting for from Mayo. Even though she didn’t think that test would change anything, she was reluctant to actually say I am in remission. I guess I can understand she is just trying to be conservative. Yet at the same time the main biopsy test that most likely would have shown any active cancer showed negative. I’m sticking with that test and calling myself in remission until told otherwise!
Also during yesterdays appointment we discussed maintenance infusions of Rituximab. Starting February 20th I will start my maintenance infusions. This was a tough decision for me and I will cover in a different post why I decided to go ahead with maintenance infusions over the next two years.
I also found out during yesterdays appointment that the results of my sleep study were ready. It was two weeks ago that I had the sleep study done and I must admit I hadn’t thought a lot about it since then. The oncologist told me the sleep study showed I do have sleep apnea and that a second sleep study will need to be setup to get me properly set up with a CPAP machine. Oh goody… Oh well, maybe that will help me sleep better at night.
I want to end this post on a good note. As far as I know I am now in remission! This is a great way to start 2019 and I look forward to spending a lot of time with my wife and kids this year and for many years to come!
Bonus Song – Feeling good again
I’ve posted versions of this song a couple of times on this blog. Now I will do so again. I can’t help but feel good about being in remission! This is a very good unplugged version of the song; even if the lack of a steel guitar is noticeable.