Day 1

My trip started off with bloodwork and vitals Monday, April 1, Day 1. My counts were not taken again until the morning of the collection process. The blood is also put through a battery of tests for infectious diseases, including HIV and hepatitis. Later, I headed to the apheresis unit — where they were just moving in that day — for a quick assessment of my veins. The nurses recommended a jugular catheter rather than lines in my peripheral veins. They said that the patients they see on Gleevec are typically taking an average of about 5 days for the total collection, and your peripheral veins can be shot long before that. I had wanted a jugular cath anyway because I had heard of a few people who had trouble with their arm veins.

Day 2

The next day I had an appointment with one of the bone marrow transplant doctors at OHSU. We reviewed my medical history and discussed the rationale for doing a stem cell collection. I had consulted with the Hutch in Seattle shortly after my diagnosis in March 2000 and launched a worldwide search for a bone marrow donor. However, no one matched, nor did my parents or siblings. If my disease accelerates to the point that I need a transplant, I would have no suitable donor. One option, however, would be an autologous transplant — I could be my own donor. My stem cells would be collected, then stored, and, when — if — needed, transplanted back into me, hopefully free of leukemia cells.

Since December, I've had two bone marrow analyses that have showed I'm in complete molecular remission (by PCR testing). That means the number of leukemia cells in my body is undetectable by standard methods. And that means it's a good time to harvest, or collect, my stem cells, since, theoretically, they should be free of leukemia cells. That would, in theory, increase my chance of survival if I had to do an autologous transplant. OHSU generally recommends pursuing a stem cell harvest if you don't have a matched donor and have had two consecutive negative PCR tests.

However, some transplant experts do not think an autologous transplant will work for CML patients. Even the doctor I saw at OHSU was very skeptical. He even encouraged me to double-check that my search through the Hutch had not suddenly turned up any matched donors. (In fact, I have since transferred my search to OHSU just to streamline the process.) Doctors are so skeptical because most CML patients who do an auto transplant do relapse, because in reality, the leukemia cells haven't been completely wiped out. Some sneak through, and they eventually cause a relapse. My health insurance company considers auto transplants for CML experimental, saying they just are not proven to work. A friend was told flat out by Dana Farber Cancer Institute that they will not do stem cell collections for CML patients because auto transplants do not work for CMLers.

The transplant doctor I saw at OHSU was not that optimistic about Gleevec itself, either. It reflects the conflict in the medical community about Gleevec vs. more traditional treatments, such as interferon and bone marrow transplants. Of course, interferon did not work for me, so that is not an option, anyway. When you have no bone marrow donor and interferon doesn't work, you have to seek out the other options and hope for the best. The doctor was concerned that Gleevec patients could start relapsing years down the road. And who knows, we might. Gleevec has not yet been proven to increase survival. (As a side note, this same doctor told me that it's generally "easier" for CML patients to eventually relapse than for patients with solid cancers, such as breast cancer, apparently because of those quiescent, or hidden, leukemia cells. They're like stealth bombs in your body. This doctor had just seen a CML patient relapse 18 years post-transplant, the longest he'd ever heard of.)

All the more reason, I believe, to have the stem cell collection if you don't have a matched donor. The doctors say an auto transplant would only buy you time, and you would relapse and die anyway. But they are basing that on today's knowledge. Who knows what treatments and transplant protocols will be available if I needed an auto transplant 10 years from now.

So, skepticism aside, I opted to go ahead with the collection.

Day 3

On Day 3 at OHSU, I saw my regular doctor there, Dr. Mauro. He was much more optimistic about Gleevec and the rationale for having a stem cell collection. He also suggested it was wise to have a stem cell collection in the event that someone relapsed from an allogeneic transplant and faced a DLI (donor leukocyte infusion). He said the subsequent DLI would be much harsher than an auto transplant. Leave it to Dr. Mauro to buoy my spirits.

Days 4-7

On Day 4, I picked up my Neupogen prescription and my sister gave me the first injections. Because the dose is large, it is split into two syringes. I also was given a prescription for Vicodin because the Neupogen can cause bone pain as your marrow cranks into high gear and produces more stem cells. After three more days of self-injecting (I took over from my sister), I experienced only moderate back pain and a stiff, painful neck — certainly nothing bad enough to justify popping Vicodin. My mother, sister, and I even went sight-seeing and hiked to the top of Multnomah Falls one day.

The Neupogen is a growth factor, also known as G-CSF. It helps stimulate your bone marrow to produce more stem cells and move them (or mobilize them) to the peripheral blood, so they can be collected. There is now a time-release med available, called Neulasta, so check with your doctor to see if it's a good alternative for you.

Day 8

On Monday, April 8, Day 8 of the adventure, my family (now including my brother-in-law) woke before the crack of dawn so I could report to OHSU at 6:30 a.m. for placement of the jugular catheter (also called a temporary central pheresis catheter). As CMLers know, it's extremely difficult for most of us to get up at that hour, so this was just an insult! And to add injury to insult, we sat around for a couple hours anyway because most of the staff in the interventional radiation department was at a conference. One of the nurses gave me my fifth Neupogen injection (this was a surprise to me, as I had heard it was only for four days) and in the process gave me a very large hematoma on my left arm. She also attempted to place an IV in my left arm but failed to get a vein, but then found a good one in my right arm. Both sticks left huge bruises (later, we learned that was a sign that my platelets might not be functioning properly, even though the counts are actually normal). My white count at that point was 21.2, up from 4.2 on Day 1.

I opted not to have any sedation for placement of the catheter. The recovery time is longer if you are sedated, but even worse than that — afterward you'll be wheeled in the hospital bed to the apheresis unit, where you'll have to do that day's collection still decked out in the lovely hospital gown. No thanks. Besides, I figured if I could do bone marrows with nothing but some lidocaine, this shouldn't be a problem.

For the procedure, my face and neck were draped completely, and then a small hole was cut out so I could see a little and breathe. The table was slanted so that my head was lower than my feet, which helps your jugular vein pop out a bit more and makes it an easier target. They sloshed betadine generously on my neck and chest. Lidocaine was injected for local numbing, and that itself hurt. They then made a small cut in my neck and inserted a guide wire into the jugular down to the right atrium, using ultrasound to see where they were going. The tract was then dilated with a larger guidewire down to the inferior vena cava. After further dilation, an 11.5 French Double Lumen 15 cm Duoflow catheter was advanced to the appropriate position at the juncture of the superior vena cava and right atrium. The cath was secured with several stitches and dressed. Fluoroscopy and X-rays helped make sure the catheter was placed properly.

Now, I must say that anyone who is uncomfortable experiencing pain might want to opt for the sedation (Versed and Fentanyl, I believe). Besides the pain, there were some momentary sickening sensations as the guidewires and cath were advanced; I could feel them moving. There was also lots of tugging, pushing and pressure. I was quite sore afterward, too, and it was very difficult to move my head (mainly because it felt like my chin was taped to my neck, which it was, I realized after looking in a mirror).

After the procedure, I heard a little "uh-oh" from one of the nurses in the operating room. It turned out that the double IV that had been inserted previously had not been properly capped. So the whole time saline was supposedly dripping into my veins, it was actually dripping onto me, along with my own blood. Although I didn't realize it because of the thick blankets, I was lying in a pool of saline and blood!

But after a quick change back into my street clothes, we were ready for the collection to begin, and we headed over to the apheresis unit.

The two nurses running the show there couldn't have been nicer, or more efficient. They had me quickly settled into a comfortable recliner and hooked up to the apheresis machine. My neck, however, was very uncomfortable. It was quite painful and difficult to move my head. One of the nurses "lectured" me about being sure to take pain medication if I needed it.

I felt nothing when the apheresis began. Your blood is simply pumped out of one of the lumens in the catheter and run through the apheresis machine. The blood runs through a spinning centrifuge machine where the stem cells, along with some platelets and a small amount of red blood cells, are removed. The rest of your blood is then pumped back in through the other lumen. As it's being run back in, the blood is warmed because the tube is wrapped in another tube filled with warm water. I did experience some tingling in my lips and feet — a sign of low calcium. The solution: Tums. Because my potassium was also low, I took potassium pills. A nurse practitioner took vitals about half-way through.

The procedure lasted about three hours. That part was a piece of cake. We actually had a pleasant time visiting with the other apheresis patient, also a CML patient on Gleevec doing a stem cell collection.

Afterward, we wandered over to the OHSU library so I could try to catch up on some email. But I was certainly pooped out by the end of the day and ready to relax on the couch back at the hotel.

As the day wore on, we noticed that my catheter site was trickling blood rather persistently. We didn't let that stop us from getting in a game of cards, of course. But as time went by, we were all getting a bit stressed and anxious that the catheter was bleeding a bit too much. Nobody was really saying much, but we all kept looking at it. Finally, around 10 p.m., with my dressings saturated and blood dripping onto my shirt, we decided it was time to pay a visit to the ER, so off we went, my sister and I. Luckily, even though the ER was rather crowded, I think the sight of my jugular catheter bleeding got us a bit of priority treatment, so we didn't have a long wait before we were ushered into a treatment room. But that's when the waiting began.

Unfortunately, the young resident really had no idea what was happening, as jugular catheters just aren't that common in the ER. His solution (after a long time spent trying to track down someone from radiology) was simply: yank out the catheter. Well, I wasn't having any of that, given what it took to get the thing in, and since I had more apheresis ahead of me anyway. So, my sister and I sat and waited and waited and waited, and meanwhile my catheter was trickling blood.

Finally, the resident's attending physician happened by the room, glanced in, and probably saw how pathetic I looked with blood soaking through the hospital gown. She took charge, got a special foam that helps platelets clot, and applied pressure to the site for a while, and the bleeding finally stopped. After all that, they then decided to do bloodwork. So we had to wait for those results to come back before I was discharged.

We finally went back to the hotel around 2:15 in the morning, to one very relieved mother and brother-in-law. I slept propped up on several pillows.

Day 9

The next morning, Day 9, we were back at the apheresis room at 8:30. The good news was that the day before we had gotten a call that this could be my last day of collection, when we'd expected about five days. That was a relief. It was another uneventful three hours. More Tums, more potassium pills, and then it was over. My blood pressure was a bit low afterward, so they encouraged drinking plenty of fluids (something I had avoided doing during the procedure since you cannot just stop to go to the restroom). We were all wiped out, yes, but happy that the process was largely uneventful.

After that, it was back to the Multnomah Pavilion to have a brief check on that bruising and get the catheter yanked. And the catheter really is yanked, but the pain is momentary. After getting bandaged up again, we were ready to go.

In the end, we collected 3.29 CD34+ cells per kg. My cells are being stored, indefinitely, in a liquid nitrogen freezer on the 14th floor of the Hatfield Research Center at OHSU, protected by multiple alarms and back-up systems.

I did find out that PCR testing detected a small amount of leukemia cells in my stem cell collection, which speaks to the debate over the usefulness of doing this procedure.

More information

Please bear in mind that this account relates only to my individual experiences. If you are scheduled for a transplant, your situation may vary drastically (you might be required to undergo intense chemo or radiation, for instance). To learn more about the procedure, check out these sites:

• Overview of Peripheral Blood Stem Cell Collection and Storage
• Peripheral Blood Stem Cell Collection
• PBSC FAQ
• Intravenous Catheter Primer
• One type of French Double Lumen (similar to my catheter)