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.
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.