Why I’ve decided to do maintenance therapy

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.

What is maintenance therapy

Here is what Lymphoma Action ( a great site out of the UK) has to say about maintenance therapy:

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.

One major downside of maintenance therapy is the side-effects of the drugs used. Rituximab is the standard drug used. The Mayo website has a list of dozens of known side-effects from Rituximab. Here is just part of the list, showing only the common side-effects:

  • Black, tarry stools
  • bleeding gums
  • bloating or swelling of the face, arms, hands, lower legs, or feet
  • blood in the urine or stools
  • blurred vision
  • body aches or pain
  • burning or stinging of the skin
  • chest pain
  • chills
  • confusion
  • cough
  • difficulty with breathing
  • dizziness, faintness, or lightheadedness when getting up suddenly from a lying or sitting position
  • drowsiness
  • dry mouth
  • ear congestion
  • fever
  • flushed, dry skin
  • fruit-like breath odor
  • headache
  • hives or welts, itching, rash
  • increased hunger
  • increased thirst
  • increased urination
  • large, hive-like swelling on the face, eyelids, lips, tongue, throat, hands, legs, feet, or genitals
  • lower back or side pain
  • nausea
  • nervousness
  • noisy breathing
  • pain or tenderness around the eyes and cheekbones
  • painful cold sores or blisters on the lips, nose, eyes, or genitals
  • painful or difficult urination
  • pale skin
  • pinpoint red spots on the skin
  • pounding in the ears
  • seizures
  • slow or fast heartbeat
  • sneezing
  • sore throat
  • sores, ulcers, or white spots in the mouth or on the lips
  • stomach pain
  • stuffy or runny nose
  • sweating
  • swelling of the tongue or throat
  • swollen glands
  • 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
  • vomiting

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”.

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