Background Information

Why am I doing this?

Oh to be young and have breast cancer… ok, that might not sound idyllic to the average person, but try being young and having non-Hodgkin follicular lymphoma. Don’t get me wrong—I’m sure breast cancer will kill you just as dead as NHL, but, God forbid, you find yourself cursed with breast cancer-- with a breast cancer diagnosis, there is this huge, well developed (um, no pun intended) community of support and information. Before facing any side effect or choosing any treatment, simply google “breast cancer” and you’re buried in information.

After 4 years or treatment and 3 different chemo cocktails, my doctor was suggesting a bone marrow transplant. Except for the couple of weeks after chemotherapy, I’ve always felt so healthy. Pursuing the bone marrow route felt like I was volunteering to make myself sicker. Then, my husband found the Zevalin website.

Zevalin and Bexxar are basically radioactive rituximab. The hype promised a chance at a lasting remission after only a week long treatment with no side effects. Here’s the thing, outside of the Zevalin website and a few published studies, there’s not a lot of info out there on Zevalin, and zero information on what the Zevalin experience is like for the patient. So, TA DA, I’m doing this to minimally relieve frustration levels for the next person who walks in these shoes.

Disclaimer

I have no medical training. In fact, the pseudo science and paranormal evidence written into the X-files TV series sounds plausible to me. YOU SHOULD NOT TAKE ANY ADVICE FROM ME on anything really, but definitely not on your cancer treatment decisions. However, if you choose to go the Zevalin route, hopefully this will give you an idea of how you’ll feel for the next couple of months.

Who am I?

My name’s Janeen. I just turned 36 (yikes). I have a perfect daughter (really—she’s smart, beautiful, funny and she’s only 2. I can’t imagine how amazing she’ll be as an adult), a handsome and infuriating husband (Eric), a fat dog (Frank) and a stupid [but attractive] cat (Jose). I live and work in Chicago.

My disease

On our first anniversary, Eric and I popped open a bottle of champagne and broke open a pregnancy test. Eric ended up drinking alone; I was pregnant. Eight weeks later, I woke up in a pool of blood. After hours in the ER, a night in the hospital, surgery and multiple ultrasounds, we found out I had lost the baby and I had cancer—non-Hodgkin follicular lymphoma “stage 3 or 4” [until recently, I refused a bone marrow biopsy because, as I understood it at the time, the results wouldn’t impact my treatment options. Hence, my exact staging was unknown].

I’ve had six rounds of CHOP-R in the Winter/Spring of 2005/2006, three rounds of RICE in spring of 2009, and a couple of rounds of a European chemo cocktail in the Fall of 2009. I also did 2 years of rituximab maintenance.


Zevalin pre-reqs

To be eligible for Zevalin treatment, you can’t have any bulky disease (defined as tumors greater than 2.5 cm across), and the smaller your tumors are, the better your chances are for a lasting remission. Further, your bone marrow has to have less than 25% cancer infiltration.

After my last round of chemo, my largest tumor was 1.7 cm across. On September 30, 2009, I finally gave in and succumbed to a double bone marrow biopsy (yeah, ouch). One sample showed 3% infiltration and the other sample was 5%.