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.

My lungs are clear!

Two weeks ago, I had a clinic visit with my oncologist. I’ll deal with most of the visit in another post. But for this blog post, I want to highlight one thing that happened during my visit. For the first time in probably a decade, I had a doctor tell me my lungs sounded clear. That was such a joyous thing to hear I thought I would share the good news.

Going back two years ago, I did a post asking if I should have discovered my cancer sooner. Throughout that post, I continually mention the fact I was having problems. Actually, my breathing problems go back at least a decade. Whenever I go to a doctor, I would be given instructions to lose weight, stop smoking, and have bronchitis. Now I have known this whole time that I should lose some weight and that smoking is horrible for my lungs. But I also knew something else was going on. This was not a simple case of bronchitis continuously recurring. 

Finally, in 2018 I found a doctor that believed something more was going on. He started me on the process of seeing a cardiologist and a pulmonary specialist. Of course, my problem ended up being cancer, which had spread into my lungs. But I am still very appreciative of that doctor for believing I had something more going on than being an overweight smoker.

Now fast-forward to today. I finished chemo about a year and a half ago and completed my maintenance infusions earlier this spring. In that time, my lungs seemed to have been healing. I have noticed that I can walk long distances, including up hills, with little problem now. That’s not bad considering that just two years ago, climbing a set of stairs would leave me breathless. My oncologist telling me that my lungs were clear was the icing on the cake of the good feelings I’ve had breathing lately.

From now on, I am losing weight. So far this summer, I have been able to lose about one to two pounds a week. I haven’t made a lot of progress on quitting smoking yet, but honestly, I’m more focused on losing weight. Hopefully, my body will continue to heal, making it easier for my immune system to fight off the lymphoma when I fall out of remission. No matter what, though, I am very thankful to be breathing!

Song of the Day: Breathe

Doing a post about breathing makes this classic Pink Floyd song come to mind. It really does feel good being able to breathe again!

Bonus Song: Feeling Good Again

I’ve featured this great song from Robert Earl Keen a few times. And I’m going to do it again. This song really sums up how I feel about being able to breathe again. This is a live version of the track I found on YouTube.