Sunday, May 17, 2015

Nothing But Neutropenia

Thanks to Tamara for leaving a comment on my last blog and thus reminding me to update all those wonderful people who have been good enough to follow my journey and pray for me.

As of February, I am in remission for lymphoma. There's already a Leukemia and Lymphoma Society, so I guess if I'm going to start something for people like me, it will have to be the Leukemia and Lymphoma Club. I know at least one other person who could qualify for it, and that person also had a third cancer, breast cancer, before her leukemia and lymphoma bouts.

My remission has been confirmed several times.

Which brings me to the reason it has been confirmed several times.

After round 4 of my planned 6-round R-EPOCH treatment, I got an infection, then the flu.

I muddled through all that with a little barfing, a couple emergency room trips, some lying around in the hospital, and losing ten pounds. I hate having to rebuild my shoulders and thighs back to normal, and now leukemia, pneumonia, and lymphoma have all made me have to do it. Ah, well.

The real problem is that after the month of sickness in February, my neutrophils never recovered. That's the part of our immune system that fights bacteria. I wasn't making any, and no one knew why. My other counts stalled out, but they weren't dropping. The neutrophils, however, dropped to zero and made no effort to come back without booster shots (Neupogen).

My doctors at Vanderbilt were "at a loss." No explanation whatsoever.

I went home at the start of March to eat chicken soup, rest, and hope the doctors could figure something out.

I was getting my blood checked here in Memphis (3 hours from Vanderbilt in Nashville) with a local hematologist. He told me, "I've seen this before. Only twice out of hundreds of lymphoma patients, but it's a reaction to Rituximab. It's temporary, and we just need to wait it out.

He put me on a 3-day per week regimen of blood checks and Neupogen shots, which kept my neutrophils hovering between 500 and 1000. A reading of 1000 is bad, and 500 is right at the border of "neutropenia." If I'm neutropenic, I can't eat anything raw, I have to wear a surgical mask everywhere I go, and take extreme precaustions to avoid illness.

I did that all of March and April before I finally asked the hematologist how long he expected this to last. One of his patients recovered in days, and the other took six months.


There are studies backing up this hematologists theory. In fact, one metastudy I read suggested that up to 25% of lymphoma patients who receive Rituximab have "Late Onset Neutropenia."

It was very hard to determine from the metastudy how long the neutropenia lasted on average. It has been almost 4 months, more than 10 weeks, and over 70 days since I had a Rituximab dose. It's been so long that I don't even remember if my neutropenia was "late onset." I know was neutropenic during my flu bout in late February, so I suspect I haven't been making neutrophils since the last round of chemo.

Vanderbilt is tired of waiting I think. On Monday, the doctor called from there to give me the results of a marrow biopsy they have me to make sure I was really in remission. I was on my way in to the local hematologist's lab when they called. I took the call, said I wanted to go to Vanderbilt and see them again, and I was told, "Don't do any more blood checks this week. Don't take any neupogen shots, and come out here next week."

Next week is tomorrow. We'll go to Vanderbilt at 9:45 (leaving home at 6 am) to get blood counts check and talk with the doctor there again. The last time I was there, for the marrow biopsy just last week on Wednesday, my neutrophils shot up to a normal level, which was a real surprise. We were excited, but when I got back to Memphis, they tested me Friday (a week ago) at 500. On Monday I was at 300, and I haven't had a Neupogen shot since. If things haven't changed, I'll be at 0 (zero) tomorrow. If I have any neutrophils at all, it will be a terrific sign of finally recovering.

So I'm still in waiting and watching mode, despite the remission.


  1. I haven't had much time to comment on the blog...thanks for always posting. A month ago my mom left Sloan Kettering and became an out patient while staying at the hope lodge in NYC. Her GVH did keep her in the hospital longer than we thought she would be there but the bone marrow transplant seems to have gone wellI know there is not a lot of comparisons for BPDCN But I know she will get better she is now home and goes to New York twice a week for infusions

    1. Yeah, GVH is really hard to predict. I was prescribed a steroid mouthwash for oral GVH today, and I'm over three years past transplant. I am glad to hear she is home!

  2. I understand about the steroids. My mom was on prednisone until today and they finally removed the picc line from her inner arm today. She still has to go to Sloan though every week but I'm really happy with her progress so far!

    1. Until today? How long ago was her transplant? I am still on steroids, though only a small dose, and I'm three years out.