'Fun' with Ferritin Not a Laughing Matter

Time for a guessing game!

Pick which one is true. You can pick more than one.

One of the best days of my life was when:

1. My first son was born
2. My second son was born, after a year of trying, in what I learned was approaching a problem called second child infertility
3. I finally got a daughter
4. I went into remission
5. I went into remission for a second time after relapsing
6. I passed the magic five-year mark after my last stem cell transplant
7. I learned my ferritin level was normal

Guess what? They are all true. You probably figured that one through six were worthy of celebration. Lucky seven probably didn’t occur to you. That’s because most people, including me, don’t give a thought to ferritin unless it’s high or low. Mine was very high, around 8,000 nanograms per milliliter. Normal for women is 11 to 307.

Ferritin, you say?

No, not a ferret. Ferritin, a protein that stores iron. An overload of it was sitting on my liver, the result of all the blood transfusions I had during my three and a half months in the hospital after my fourth stem cell transplant. These high levels ran the risk of damaging my joints, heart, liver, and pancreas.¹

Something had to be done. That something was drinking a gross (and expensive) medicine called Exjade (deferasirox). After my doctor prescribed it, we waited to see if my insurance would cover the price that the drug maker, Accredo, charged. I don’t know why it cost $8,114.90 per 30-day supply, but that’s what it was.

We got the approval. Exjade binds to the iron and carries it out and away in a process called chelating. For the next six years, this was my routine: Dissolve five pills in water every day. Drink on an empty stomach. Feel queasy. Wait 30 minutes before eating. It was so hard on my stomach that I sometimes had to take breaks. I remember trying to find ways to distract myself in that 30 minutes. Sometimes I would vacuum – anything to take my mind off the nausea.

In addition to taking Exjade, I did something that I found exceptionally weird. To help speed the process, I got “therapeutic phlebotomy,” which involves having a pint of blood drawn and discarded every couple of months. It was weird to lay in a room where people were giving blood while I was giving blood to the trash. I also had to avoid iron-rich foods such as spinach and strawberries. And when buying vitamins, I had to look for those that did not contain iron. This was not easy.

Number 7 of good news days

I thought about this period recently when chugging Metamucil, another nauseating drink. A doctor had said it could help with some digestive problems I am having. It was not the taste so much as the consistency that brought those unpleasant memories back. But with the memory of having to do it came the memory of getting to stop.

And that brings me to number 7 on my list of good news days.

In my blog post of Oct. 24, 2015, I wrote that a nurse called and “said the prescription had come up for renewal and Dr. Alyea said I was done! I think my ferritin level was 742, close enough to normal.” (Dr. Alyea was my doctor at that point.)

In a post from a couple of months later, I was happy to report that I was eating spinach salad. I accompanied it with a photo of the previously forbidden spinach and strawberries. It must have tasted super good, and, without a doubt, much better than the Exjade I had taken for so many years.