I am now scheduled to begin the stem cell harvest process on April 1. No joke. My insurance company has said it will approve (read: pay for) the consultation, lab workup, infectious disease testing, G-CSF injections, and, finally, the harvesting at OHSU. I expect to be in Portland about two weeks for the whole process.

While I hope my stem cells will never have to be transplanted back into myself, I am grateful that I have, for now, reached remission, and am able to harvest and then freeze my stem cells should I need an autologous bone marrow transplant.

I know that it's a chance many people do not have.

It's been nearly a year now since I started taking Gleevec. The usual side effects persist, plus the errant few that offer a middle-of-the-night surprise. Most recently, I have been having excruciatingly painful muscle cramps throughout the night that just paralyze me with pain. Oddly, this is a side effect patients generally experience early on in their Gleevec experience (and milder), and it typically subsides over time. Mine doesn't seem to want to do that.

But the thing with Gleevec, of course, is that the more people who take it, and the longer we are on it, the more side effects we are beginning to see.

Oh, here is a bonus for those of you paying attention: My insurer will cover travel, lodging and meals during my stem cell harvesting process. That's because it's considered to be part of a bone marrow transplant process.

No, silly! My insurance company did not volunteer that payment information. I had to ask if it would reimburse me for some of these expenses. Only then did they tell me they would cover those expenses.

March 19, 2002

I had my seventh or eighth (I'm already losing track) bone marrow biopsy yesterday in preparation for a trip to OHSU for a stem cell harvest.

Unfortunately, that might not happen.

Although I received specific verbal approval for the harvest from my insurance company, Anthem Blue Cross (in a phone conversation that it recorded), and then later written authorization for "evaluation, follow-up care, lab tests, diagnostic tests and all procedures related to potential bone marrow transplant," my case manager told me today that she made a mistake. She said she did not have the authority to issue that approval.

The problem is that my insurance company considers autologous transplants for CML to be experimental. And the only reason for a stem cell harvest is in case I eventually need an auto transplant, if my CML progresses. The problem for me is that despite an exhaustive worldwide search by the Hutch in Seattle, I have no suitable donors for an allogeneic transplant; an auto transplant would be my only hope.

My case is now being reviewed by an oncology consultant to Anthem, and I expect to hear by March 22 if the harvest is approved or denied. If it's denied, I can file an appeal, and I will, of course. I don't know if the insurance company has the right to rescind a written approval for treatment, and I plan to fight it if it tries.

Meantime, I am beginning to know just how "John Q" feels.

March 22, 2002

It was a rocky week. Lots of frantic phone calls and emails to my doctors and my insurance company to make sure the approval for my stem cell harvest comes through.

After realizing the huge error they had made, my insurance company sent my case out to a third-party oncology consultant (they refused to identify the company but did admit the company is paid under contract by Anthem) for an "emergent review." My insurance company also refused to give me a letter in writing stating that they were rescinding their previous written authorization of the stem cell harvest. Apparently they weren't sure it was in their "best interests" to put more information in writing. I also had requested copies of the audio tapes of my conversations with my case manager, who initially authorized the harvest, but it's highly doubtful I will ever get those tapes.

I also did not get any answers about the right an insurance company has or doesn't have to reverse itself when it's already authorized a procedure.

In the end, it was good news, though. I learned about 3:30 that the consultant did authorize the stem cell harvest. Now, I'm waiting to get the authorization in writing.

Unfortunately, another potential problem cropped up in the meantime. OHSU insisted that I bring with me reports on the cytogenetic and FISH anlayses of my latest bone marrow. Well, we didn't have that done, as we thought the PCR was sufficient, especially with OHSU itself doing that. It looked like I would have to go back for a second bone marrow biopsy in the same week. Again, after a flurry of phone calls and emails among me, my doctor's office here, and several doctors and laboratory staff at OHSU, the researchers are going to see if they have enough left over from the PCR sample to also do the cytogenetics and FISH.

I hope so. At this point, I don't need another pain in the behind.

The Backstory

I was diagnosed with Philadelphia chromosome-positive chronic myelogenous leukemia after having my first bone marrow biopsy on March 9, 2000, at age 33.

Like many, I can see in retrospect that I hadn't been feeling up to par for a while before that. I had been running three or four miles a day the fall of 1999. But around November, I started getting worse, not better. In fact, I often had to stop and walk because I felt weak and I couldn't seem to catch my breath. I simply figured I'd reached a plateau and wanted to push harder to do better.

Then, in January 2000, I had a blood test, and my white count came back a bit elevated, in the low 20s (the normal range is about 4 to 10). Initially, I wasn't too concerned. A nurse even suggested that an infected earring site could be the cause. Blood tests were repeated, and again my white count was high, as was my platelet count. I began to get a bit concerned and jumped on the Internet to do some research. I matched up all my blood test results with possible diseases and concluded that they all pointed to CML. I also got a copy of my doctor's notes and saw a handwritten note on my blood report to refer me to a hematologist/oncologist. That's when I became more concerned and called around my area to find a hematologist who could quickly schedule for me a bone marrow biopsy. (I later fired that hematologist when I found gross mistakes in his doctor's notes, including results of a physical he had never actually conducted.) I got the results in late March, and as I had expected, it was chronic myelogenous leukemia.

My initial treatment was Hydrea, followed soon after by interferon, then the standard treatment for CML. Ultimately, I proved to be "interferon resistant and interferon intolerant." Basically, it wasn't working, and the side effects were so bad anyway I couldn't tolerate interferon. In the meantime, I had consulted at Fred Hutchinson Cancer Research Center in Seattle, Wash., and launched a worldwide search for a bone marrow donor, which has proved fruitless. I have a complicated HLA makeup and have no compatible donor.

Also in the meantime, I had put my journalism skills to use and gotten in touch with arguably the top three CML researchers in the world, including Dr. Brian Druker at Oregon Health Sciences University in Portland, Oregon; Hammersmith Hospital in the U.K., and M.D. Anderson Cancer Center in Texas. All three recommended a different course of action (Gleevec, transplant, and interferon). The latter two were not an option for me.

Unfortunately, at the time, Gleevec was available only in limited clinical trials, and I wasn't "sick enough" to qualify for a trial. Eventually, however, it became clear that interferon was not working, and I was accepted into the expanded access Gleevec trial. I took my first 400 mg. dose on March 19, 2001, almost a year to the date after my diagnosis.

On Dec. 20, 2001, I had my sixth bone marrow biopsy (and one of the most painful). The results were sent to OHSU for the most sophisticated analysis. On Friday evening, Jan. 4, 2002, my doctor at OHSU called to tell me that I was PCR negative — I was finally in complete remission, after two years. I am hoping to have a stem cell harvest this spring, to collect and store my stem cells should my disease progress and I require a transplant; I will be my own donor, if need be.

I am grateful that Gleevec has worked so quickly and efficiently for me, for now. However, there is concern that people can develop resistance to the drug over the long term, and some patients have relapsed, in fact. OHSU recommends taking the drug for at least two years after achieving PCR-level remission (complete absence of the Philadelphia chromosome). I am terribly saddened that some of my friends have not done well on Gleevec, and that their disease has progressed anyway, and that others have been unable to tolerate what can be nasty side effects of the drug (contrary to some mainstream media reports equating it to popping an aspirin a day). Only you and your doctor, based on your personal circumstances, can decide if interferon, Hydrea, Gleevec, or a new drug (arsenic trioxide, for instance) is right for you.

Today, I continue to take Gleevec, as well as Epogen, for the anemia Gleevec causes some people. Below, you'll see some photos of my bone marrow biopsies, various injections, and other moments. Before I had my first bone marrow, I was so curious what it involved, and I just couldn't find good information. I hope these photos give you a better idea of what it entails. And one more note: If you have to do regular injections, I recommend learning how to do them yourself, and also getting family and friends involved. I have had my mother, sister, brother, sister-in-law, and friends give me injections, and it's always been fun and interesting. Really!

If you have interesting and fun photos you want to submit, just email them to me, and I'll post them on my site for you to share.

— Jennifer