Why I stopped maintenance treatment early

My memory issues had me feeling like I was losing floppy disks.

In April, I had blogged about my regularly scheduled maintenance infusion being delayed a month. My next maintenance infusion never happened. Due to publishing issues, I have not blogged since then and decided now I would catch everyone up on why I stopped my Rituximab maintenance infusions. 

Ongoing memory issues

Through my blog over the last year, I have posted many times about memory issues. Actually, of all the side effects from lymphoma and chemotherapy, memory issues by far are the most problematic for me. Ever since going through chemo, I have had problems with short-term memory. And it isn’t just a thing where I’m not paying attention. It’s also not a situation where I will remember later on. A lot of conversations I have had with family and friends disappear after I have them. It is not every conversation, but enough to be quite concerning. 

A final visit with the neurologist

I’ve visited with a neurologist a couple of times over the last year. The last of these appointments occurred in April. Up until this time it was believed my memory issues were being caused by the maintenance drug I had been taking, Rituximab. He noted this is not a common, or even uncommon, side-effect of Rituximab. But he did say with drugs such as Rituximab, it is not unheard of for a patient to have very rare side-effects which are not generally seen in other patients. It is his belief that my short-term memory loss could in fact be a side-effect of Rituximab. His recommendation was to stop the use of Rituximab and look at alternatives.

Meeting with the oncologist

In May, I had the appointment scheduled for my maintenance infusion of Rituximab. Before the injection was expected to begin, I had a meeting with my oncologist. I spoke with her about my short-term memory loss. Also, the input from the neurologist was taken into consideration. It was my oncologist’s recommendation to stop maintenance to see if the memory loss would become better.

At that time, I had about a year and a quarter of maintenance infusions. The original plan was to have two years of maintenance. We hope the infusions I could receive are enough to keep the lymphoma at bay for a good number of years. Going into this, we knew maintenance wouldn’t get rid of lymphoma cancer altogether, but it has been shown to prolong remission for many people. Hopefully, I received enough dosages to be in remission for a good decade before needing more invasive treatment (such as chemo or CAR-T cell therapy).

Three-month follow-up with my oncologist

Last month I had my three-month follow-up with my oncologist. She, of course, asked if my memory issues had been getting better. I should have been prepared for the question. But honestly, I was caught a bit off guard. As I looked back at my summer, I realized there seemed to be very few memory issues. I can’t recall any embarrassing situations that came about because I forgot a whole conversation. And being off maintenance, I feel better than I have in ages.

My wife did mention she thinks I still have some memory issues. She might be right. But they don’t seem to be anywhere near what they used to be. In fact, my current memory issues are few and far between and seem to be more of a chemo-brain type thing than a full-blow side-effect of Rituximab. As time goes on, I’ll have to try to figure out a way of seeing whether my memory issues have gotten better.

Goodbye to maintenance

I must admit I’m not sad to be done with maintenance. Going into maintenance I was willing to put up with the side-effects and lowered immune system with the hope it would continue my remission. Had the side-effect kept to feeling weak and flu-like symptoms I would have continued on maintenance all the way until its two-year conclusion. But these memory issues really had me worried. A great fear of mine is that these memory issues would stay with me for life. There is a possibility that continuing on Rituximab would have done permanent damage to my memory. Permanent memory issues just to possibly extend my time in remission just didn’t seem worth it.

Song of the day: Say Goodbye

There are a lot of songs about leaving something behind and saying goodbye. The song I chose for saying goodbye to maintenance comes from Kid Rock. The following lines went into my head while thinking of saying goodbye to Rituximab:

comes a time we have to face it
maybe it’s just time to say goodbye

Say Goodbye, Kid Rock

Bonus Song: Fooling Yourself

This song from Styx often comes to mind when I plan significant changes in life. I particularly like this live version found on YouTube.

Maintenance infusion delayed one month and neurology appointment will be over the internet

The last time I blogged was almost two weeks ago. This delay has mostly been due to being busy with work. I work in a tax preparation office and have been busy blogging for that, though. At that time, I mentioned my maintenance infusion of Rituximab as canceled due to my wife being a presumed case of COVID-19. I now have a new appointment set up for my maintenance infusion next month. Also, the neurology appointment I have scheduled for next week is now going to occur remotely. 

First, an update on my wife

Before talking about my upcoming appointments, I would like to let everyone know my wife seems to have recovered. Her fever broke about a week ago. Her breathing is still strained, but not near as bad as it was. The current breathing issues could very well be more related to spring allergies than COVID. That is one less stress with her having recovered!

Maintenance scheduled for the first week of May

Barring any health issues, I now have my next maintenance scheduled on month after it initially should have taken place. As I noted previously, my oncologist is concerned about my memory issues. She may change me over to a different medication. I will see what happens when I have my actual appointment. As of right now, the appointment is scheduled. The hospital has not stopped Rituximab infusions due to the coronavirus outbreak.

Neurology appointment next week.

I have a follow-up appointment scheduled with my neurologist next week to discuss my memory issues. Since Sioux Falls has become a hotspot for COVID-19, I was wondering if this appointment would still happen. Well, earlier this week, a staff member from the neurology clinic called and asked if I would be OK making a telemed appointment. I let her know I was more than happy to utilize a remote meeting. Sioux Falls is a three-hour drive from my house. It only makes sense to participate in the appointment remotely, especially with this whole coronavirus thing going on.

More posts to come next week

I’m looking forward to seeing how a telemed appointment works out. I’ll do a post about how the whole telemed experience went. There will also be another post about the results from the neurologist. Finally, this upcoming week I will have a post up about going times I have to go out in public during the coronavirus outbreak.

Song of the Day: Too Much Time On My Hands

Luckily, I have been busy working remotely for the tax office. That has kept me pretty busy. But, even with the tax deadline being extended, I now have a lot less work to keep me busy. I have a feeling this Styx song will be going through my head while I’m isolating at home with my family.

Bonus Song: Fooling Yourself (The Angry Young Man)

I thought I would stick with Styx for another song. If you haven’t noticed, I am very into music. This particular song was my personal theme-song when I decided to quite a job some decades ago and changed the direction of my career. That was a great move, and I have no regrets.

Actually, this isn’t all of Styx. This video has Tommy Shaw (of Styx) singing this song with a youth orchestra. I love the things that can be found on YouTube!

My maintenance infusion was cancelled

No pokes for a while!

Since finishing chemo in December of 2018, I have had maintenance infusions of Rituximab every eight weeks. Next Wednesday, I was scheduled to have my next round of maintenance. However, with all of this coronavirus stuff going on, I wondered if maintenance infusions were even considered important enough that the hospital would keep doing these infusions. Also, my wife is presumed to have COVID-19, and my household is under quarantine for two weeks. In this post, I will briefly discuss whether maintenance is essential and what my oncologist had to say about my maintenance infusions going forward. 

Is maintenance essential?

I belong to a few online support groups for lymphoma patients. It seems that different oncologists have different opinions about whether maintenance is essential when a global pandemic is going on. The clinic I go to appears to treat this as an essential procedure. I got my notification from the clinic confirming the appointment yesterday. I did contact my oncologist after getting that notification, but honestly, I forgot to ask her whether maintenance infusions were considered essential. Most of my time speaking with her was about other issues (expanded upon in the next section).

If you or someone you are caring for is going through maintenance, I would suggest calling the oncology team and finding out if they are still doing maintenance. I’ve spoken with many who live in communities with the rapid spread of the coronavirus. In those cases, maintenance infusions have generally been postponed. I think the term “essential” for medical conditions can change rapidly depending on the current coronavirus spread in an area.

The conversation with my oncologist

In yesterday’s post, I noted my wife is presumed to have COVID-19. Most of my phone conversation with the oncologist revolved around me quarantining myself away from my wife. She recommended I avoid her as much as possible and wash my hands regularly. Additionally, she wants me to wear a mask when I am around my wife. Basically, she wants me to be under quarantine away from my quarantined wife (my words, not hers). It is almost like I’m going through chemo again. 

During the conversion, my oncologist noted that my immune system is compromised. It could be horrible for me to get the coronavirus. I’ve seen many lymphoma patients going through maintenance wondering if they have to be concerned. After speaking with my oncologist, I get the impression that we should be very concerned! Our immune system is not going to work as good as a healthy person’s immune system.

One other topic during the conversation with my oncologist was my memory issues. I affirmed that once again, I seemed to have memory issues. They seemed to begin about five days after receiving the Rituximab infusion and lasted for at least two weeks. Actually, now that I think about it, the memory issues lasted longer than two weeks. But they seemed to start getting a little better after two weeks. I’ll have to remember to tell the oncologist that. 

The reason my maintenance was canceled

Since my wife and our whole household are under quarantine for two weeks, I knew next week’s appointment would not happen. What I didn’t know is if the oncologist would want to do it the week after, or cancel it altogether. What she decided to do was cancel the current appointment and follow up with me in a month. At that time, she will get an update on my status and my wife’s condition. If there continues to be community spread in Brown county, she might push any further maintenance even further into the future. Even so, due to my memory issues, I may be utilizing a different drug than Rituximab for ongoing maintenance.

I get at least a month off maintenance

Part of me is happy I get to another month without a maintenance infusion. Maybe I’ll start to feel better overall. But another part of me is quite unhappy about missing this maintenance infusion. I can’t help but wonder if changing my maintenance schedule will give the lymphoma cancer cells a chance to reorganize and start spreading rapidly again. I know my wife is terrified about me missing a maintenance infusion. All I can do is hope this time off maintenance doesn’t have any long-term repercussions.

Song of the day: I Want To Break Free

I have kind of a love/hate relationship with my Rituximab infusions. On the one hand, I love that the injections may keep cancer at bay for longer. But on the other hand, I hope to feel closer to normal now that I won’t be doing maintenance for at least another month. So I thought this great Queen song was in order:

Bonus Song: Red Barchetta

Since my song of the day had to do with breaking free, I thought I would share a classic song from Rush that epitomizes freedom for me. To me, Red Barchetta is not about a car, but rather about the feeling (no matter how temporary) of pure freedom. Below is a brilliant live version of the song.