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Reflections on Chemotherapy

Back in April of 2014, while looking for a cause of my periodic fatigue (which turned out to be gluten intolerance), I got diagnosed with Chronic Lymphocytic Leukemia (CLL). It's a form of cancer usually found in elderly people (though I was 37), and being chronic it's usually something you die with, not of. But I had no symptoms yet, so I was put on "watch and wait" status with regular blood tests, and I was given genetic tests to find out what kind of treatment would be recommended if and when I did eventually need treatment. Notably, the tests showed I had a gene that indicated I should get treatment immediately as soon as symptoms began... which is a nice way of saying, if I didn't get treatment immediately, I wouldn't stand a chance!

Fast forward to October of 2017. Having given up gluten, I had gotten my old energy back and was doing long-distance bicycling -- notably RAGBRAI 2016 -- and I was training for the first ever "Rush the Rails" event at what is now the Flint Hills Trail State Park when I noticed I suddenly felt as tired after 2 miles of riding as I had felt after 20 miles just a few days before. I knew my body well enough to know that wasn't normal. As it happened I had a regular blood test right about that time, and it came back showing hemolytic anemia: my white blood cells were attacking my red blood cells, and the dead cells were accumulating in my lymph nodes and spleen. Staging of CLL is not precise, but generally this is a stage 3 symptom indicating that someone with my genetics should get treatment right away. I went ahead and rode more than half of the 97-mile bike ride because the doctors said to go ahead, but between the fatigue and the soft muddy trail, it wasn't much fun!

My local oncologist recommended a pill called Ibrutinib that I would need to take every day, indefinitely. Although it sounds like it works great to keep the disease in check, the potential side effects sounded awful, and the price of the drug is astronomical. After a second opinion from a CLL specialist in Kansas City, I elected to start chemotherapy instead. There would be six treatments, 4 weeks apart, after which I could expect a remission of 5 years, plus or minus 5 years. During the remission I should feel healthy and need no medication, and by the time the disease eventually returned, I might have better treatment options. That sounded like a better deal to me than taking Ibrutinib forever.

So, after a barrage of tests and a lot of paperwork (most of which was handled for me by the cancer center), I started chemo in early December. Each month I got an anti-nausea pill (Akynzeo) and some Tylenol before an IV of Benadryl, a steroid, a big bag of rituximab (immunotherapy), and finally a smaller bag of bendamustine (chemotherapy). The following day I'd go in again for another bag of steroid and bendamustine, and the day after that I'd get a shot of Neulasta to help my healthy white blood cells rebound from the chemo. The only side effects I experienced were hiccups for about 2 days (I'm guessing from the steroid), flu-like symptoms from the Neulasta, and some fatigue toward the end of the month as my blood cell counts plummeted. I'd get a blood test right when I was feeling my worst and then feel better just in time for the next round. In retrospect it's hard to believe that I did this 6 times. It feels like maybe 3 or 4. It's kind of a blur. The final month (May), my side effects were much much less severe, which apparently is a common experience for patients who receive this particular kind of chemo. I had no hair loss, indigestion, loss of appetite, or the other symptoms people associate with the older types of chemo.

There are a few reasons why this was a good and convenient time for me to get treatment: We had already finished all our home improvements, so I didn't feel pressure to scrape wallpaper or repaint while I was feeling crappy. It wasn't gardening season, so there was nothing to do in the yard. And we hadn't yet started packing up the house to move away. Plus, some relatives and friends were able to come visit during my treatments, taking some of the pressure off of Jessie and keeping her company.

In other ways, though, the timing was bad. Jessie's spring semester was the busiest she's ever had -- on top of her full-time job and her part-time counseling practice and taking classes for her doctorate, she was fulfilling her internship semester by serving as temporary department chair while the regular chair was on sabbatical! So the stress of being a cancer caregiver was not a welcome addition to her responsibilities. The cost would also have been lower if we could have managed to delay treatment a few months, which brings us to the topic of insurance.

I was covered by Jessie's insurance to the tune of about $300/month, but we knew Jessie would be changing jobs later this year, so I got individual coverage under the ACA for the 2018 calendar year. At the time I applied, I hadn't yet decided whether to get Ibrutinib or chemo, so I got a plan that would cover Ibrutinib for a $500/month premium, with a $6500 deductible and a health savings account (HSA). As soon as the HSA was open, I (with help from my generous parents!) maxed it out with a $6650 contribution. However, the first treatment in December met our joint deductible and out-of-pocket maximum for 2017, and the second treatment in January maxed out the new plan right away. The explanation-of-benefit forms have not finished coming in yet, but it's safe to say that Medica will never get back from me the amount they spent on me this year (over $120,000 so far).

But how much did it cost us? I want to share this because most people don't, and it's important to know. We had to pay about $33,436 in all. That includes the monthly insurance premiums and our out-of-pocket maximum both calendar years, plus a few tests that insurance did not cover. We would have saved about $6K if I'd gotten sick in January instead of October, but that couldn't be helped. I would strongly encourage anyone in the US who is eligible for an HSA to contribute as much as you can each year (tax free!), so that you'll have it on hand when you need it. Our medical system is bonkers, but it's the system we've got for now, so you've got to work with it. You may be healthy now, but that can change anytime.

The outcome of all this is that 6 months later, I'm feeling about 99% better. I have all my old energy but not yet the endurance. I even seem to be able to handle gluten better than I used to, which after all is where this adventure started. This is important: if I had not taken my symptoms seriously from the start, I would not have received treatment in time. If I had not taken the gluten fatigue seriously, I woudn't have been diagnosed with CLL until years later when my lymph nodes started swelling. If I hadn't cut out gluten and resumed an active lifestyle, I wouldn't have noticed the anemia when it started. And if I hadn't started treatment right away, I might not be alive now to talk about it. I know a lot of people who are in the habit of working on through their fatigue, discomfort, and pain. If I had been one of those people, I wouldn't be in remission now.

I want to say that I'm very grateful for my support network, especially Jessie, but also family and friends who checked in with us and made sure we were both doing OK, and fellow patients who shared their valuable experiences online. I'm grateful that I have a job that I can do from home, that the chemo mostly didn't interfere with my ability to work, and that my coworkers cut me lots of slack when it did. I'm grateful for the scientific research -- and for all the people who volunteered for medical studies! -- such that the doctors were able to precisely determine what treatment would work for me with minimal side effects, and for the confident competence of the local cancer center. I'm grateful to ObamaCare for helping me choose an insurance policy that fit my needs, without allowing them to exclude my "pre-existing conditions." I'm grateful that the insurance then covered most of the cost, and that we were able to afford the insurance and to pay for what it didn't cover. All in all I'm a very lucky man, and I wouldn't trade places with anyone! Thank you to those who were part of this adventure.

Comments

Very well-written Ben. Thanks a lot for sharing. We’ve messaged about this a bit, but our time courses with diagnosis of CLL have overlapped somewhat. I was diagnosed in 2013, at age 38. This June is my 5 year mark. I too have the hemolytic anemias, and when I had my most recent one in December we had to plan for more treatment. The original plan had been chemo similar to what you received, but in the work-up they found a new mutation that rendered the chemo less effective. So I started the ibrutinib in February (for me, the side effects have been fairly minimal - so don’t stress about it too much if you ever need it). The bummer is that at the moment the next line treatment would be bone marrow/stem cell transplant or possibly CAR-T therapy, which doesn’t have great efficacy yet for CLL. And the ibrutinib has a median response time of 2-3 years. So we wait here, hoping for more new developments. And thanks for opening up about the insurance aspect of things. As you point out, the costs are staggering. I am glad you have the insurance.

I wish you the very best in all the next stages. And may you have a very long and uneventful remission!

Warmly,
Brett