This is copied from two of my postings at LightTheNight.org. It is copied here because LightTheNight seems to be temporary, and my posts disappear some time in the spring of each year. The originals were posted on Sept. 6, 2011.
My sincere thanks to all of you who have given me encouragement, either through moral support or through donations to LLS.
Often, upon learning of my predicament of having a treatment but not a cure, one friend or another is astounded that I was resigned to live with it. Is there no cure? I say, yes, there is. It’s called Stem-Cell Transplant (SCT). But why am I not pursuing it? Well, it’s complicated…
Let me introduce you to Jeena (pseudonym). She’s middle age, married, with children. Earlier this year, she was diagnosed with AML, a different type of leukemia. The first letter of AML stand for Acute; this contrast that of CML (my type), for chronic. AML is more serious, more aggressive.
A mutual friend introduced her to me. Since the leukemia type is very different, I’m not at all familiar with AML’s treatment regiments and prognosis. I introduced Jeena to a bunch of websites, including the main site of Leukemia and Lymphoma Society, and its BBS, where a lot of patients congregate and share their stories and experiences. Unlike medical professionals, patients don’t hold back when they discuss their understandings and their issues, with their illnesses or their treatments. But Jeena doesn’t have the time or patience to read through all that. So I help her to dig for information.
Time is of the essence. Her doctor pressed her to start chemo ASAP. I encouraged her to brace herself, and go for it. But it didn’t turn out well. Chemotherapy, the traditional kind, relies on the drugs killing the faster growing cells more than the slower growing ones, in the hope that the faster growing cells are more likely to be cancer cells. But the drugs are poisonous to normal cells as well. In her case, the chemo sessions did not significantly bring down her white blood cell (WBC) count, although she did suffer from the side effects. After a few sessions, the chemotherapy was stopped.
Fortunately Jeena’s Cancer Center is participating in a clinical trial, and she signed up with it, after a couple of weeks of recuperation from the chemo. This was her best hope, and it delivered. Her WBC came down. The problem is, her neutrophil (one subtype of white blood cell) level was by now very low, making her vulnerable to infection. And what I worried about, I told her, was that there was no follow-up regiment. If (or more likely, when) the leukemia comes back, there was nothing else to try. So we discuss SCT.
SCT is the modern variation of bone-marrow transplant (BMT). In this treatment, the patient’s white-cell making stem-cells are killed off, through a combination of chemo and radiation. Donor stem cells are introduced, which eventually take hold in the patient’s body and repopulate it with white cells. The new white cells contain the donor’s DNA, and would find any leftover white-cell from the patient to be foreign and kill it. This is called the Graft-vs.-Leukemia (GVL) effect, which brings about a cure. One can also have a SCT from her-/himself. But because the stem-cells are one’s own, it could not cause the GVL effect.
To get a SCT, the first step is to find a good matching donor. The better matched the donor is, the better the prognosis. But the SCT donors are very limited, and Jeena wasn’t able to get a good match in the short time frame she had. Fortunately a couple of close matches were found with cord blood. (I’m not sure how this works—I thought usually cord blood is banked for the baby to use after s/he grows up.) Both were needed because the amount of stem cells in cord blood, although in much higher concentration than in adult’s blood, is limited due to the limited volume of the cord blood.
The next questions are when and where to do the SCT. One of the best cancer centers for SCT, or most other treatments, is Sloan-Kettering Memorial Hospital in New York City. Jeena very much wanted to do it there, partly because the center she’s using had had several issues in her treatment alone; I promised her that I’d go to meet her in New York City if she was to come for treatment. But Sloan-Kettering is in such a high demand that she had to wait for several months before they can operate on her. Yet she might not be able to wait.
You see, to be able to even start SCT, the patient must be in some relatively stable condition, such as in a remission. If Jeena’s leukemia comes back, there may not be another opportunity to do this. I’m usually not a big risk taker, but I encouraged her to go for it. The center is not her choice (it’s close to her home, but not of the reputation that she’d like to have), the match is not perfect, but the opportunity could be once in a life time. Literally.
She went for it. I don’t know if my discussions with her played any role in her decision.
Chemo and radiation treatment to kill off all her bone marrow took two weeks. She’s super-critical now. No defenses against infection. Isolation ward. The only people sharing her ward were those in similar plight, those without defenses. SCT. After about one week, it was found that at least some of the transplanted stem cells took hold. These were from one of the two sets of donor cord blood. This I guess is expected. When one set of the stem cells got successfully grafted, their progenies, the fully functional white blood cells, would kill off the other set of stem cells and all their progenies—as well as all of the leftover host stem cells or white blood cells.
Once the transplanted stem cells took hold, and Jeena’s white blood cell count recovered to near normal ranges (actually doctors care more about neutrophil count), she was discharged from the hospital. Hooray! But by now she started to experience the onslaught of Graft-vs.-Host Disease (GVHD).
GVHD is when the newly introduced white blood cells starting to attack the patient—think a newly imported army, which by instinct recognizes all local citizenry as foreign enemy, and starts to attack them. Her symptoms include high blood pressure (her diastolic pressure, the low number, is over 100), swollen neck, and upset stomach. These symptoms, although severe, are not unexpected, and are manageable. Jeena’s doctor prescribed heavy-duty steroid to tame down the GVHD, which unfortunately comes with the side effect of lowering her immunity.
So this is still a critical period. Jeena’s steroid is being gradually dialed down, as long as her GVHD does not flare up. But this cannot be done too slowly, otherwise her immunity is suppressed, and she’s in danger of succumbing to common infections that do not affect you or me. The use of steroid for immune suppression may be a life-long commitment. But that would only be a bad side-effect of a good treatment: a long(er) life is a precious gift.
So we celebrate, one step at a time.
ps: Your donation dollars at work. When I first saw the research published on main stream media, how I wished that the work was funded by LLS. Now I’m so relieved that it was.
pps: As of late August, Jeena’s condition is still improving. She now suspects that she’s not actually suffering from GVHD, but from an alergic reaction to her antibiotic medication. (She’s on immunosuppressant drugs, and at the same time on antibiotics as well as anti-viral drugs.) Hopefully the reactions will lessen with time, especially when she’s weaned of her meds.