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.

I’m in remission… most likely

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.

Two weeks ago I posted about going in for a bone marrow biopsy. This was done because my PET scan showed possible cancerous activity in my pelvis. The rest of my PET scan looked good and it would have appeared chemo worked 100% if it had not been for that spot on my pelvis. To ensure I am in remission my oncologist ordered a bone marrow biopsy for me. My experience of going through the bone marrow biopsy can be read here. Truth be told I hope to never go through another bone marrow biopsy.

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.