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Yes, that's right. I've relapsed.
There's some good news, in the midst of the bad. The pathologist's analysis of my core-needle biopsy sample has revealed only small lymphoma cells. The lab-coated geniuses peering through microscopes found no trace of the larger, aggressive cells that were present at the time of my initial diagnosis.
Dr. Lerner says this doesn't surprise him. Other patients he's had in the past, with the same "diffuse mixed large and small cell" grading, have been treated successfully for the aggressive component of their disease. The indolent, small cells, on the other hand, are always much harder to defeat – in fact, indolent lymphoma is considered "incurable, but treatable."
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Dr. Lerner conducts a physical examination, spending a great deal of time touching and probing my neck and armpits with his fingers (these are parts of the body where lymph nodes are close to the surface). I ask him if he can feel the same swollen nodes under my jaw and at the base of the neck he felt the last time I was in his office. He says he can't – but, this comes as no great surprise to him. Cancerous lymph nodes swell up, but sometimes they also inexplicably diminish in size.
Locating the tiny scar from the biopsy needle at the base of my neck, he probes that area. He says he can't feel the deep-down, swollen node from which the biopsy sample was taken (but then again, neither could the surgeon, Dr. Gornish, as I lay on the operating table several weeks ago).
So, what's ahead? The first order of business is another PET/CT scan. I'm due for one, anyway – more than three months having elapsed since my last one – so there shouldn't be a problem getting the insurance company to fund it. Second, I'll return to his office for another bone marrow biopsy – I'm due for one of those, too. Third, I'll take those scan results, along with the biopsy slides and pathologist's report, up to Dr. Carol Portlock at Memorial Sloan-Kettering Cancer Center in New York. (She's the lymphoma specialist I've been conferring with, for second opinions.)
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• (1) Watchful waiting – It's a slow-growing lymphoma, and I have no symptoms right now, so one approach would be to just wait and see what develops (this approach is more commonly used with older patients, rather than younger ones like me, but it could still be appropriate if the next scans continue to reveal only a few problematic lymph nodes, and if I continue to have no symptoms).
• (2) Aggressive chemotherapy – This would be treatment with a second-line chemotherapy regimen, with the usual grisly side effects. It would almost certainly wipe out all discernible traces of lymphoma – although it's debatable whether it would be more effective, in the long run, than the other options.
• (3) Stem-cell transplant – This is a form of second-line chemo, but the drugs are so toxic, they would take down my entire immune system. The doctors would harvest stem cells from blood ahead of time, freeze them, and use them to rebuild my immune system after the treatments are finished. The stem cells would come either from one of my brothers (allogeneic transplant) , or from my own blood (autologous transplant) . Stem cells from a sibling donor are more likely to wipe out the cancer, because there's zero chance any free-floating cancer cells could slip through the sieve – although they offer their own set of challenges.
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I ask Dr. Lerner about the radioimmunotherapy drugs, Bexxar and Zevalin. He says that, yes, one of those would also be an option:
• (5) Bexxar or Zevalin – Both these drugs are Rituxan with an added kick: a tiny fragment of radioactive material that piggybacks on each molecule of the medication. The Rituxan does its thing, targeting the CD-20 protein on the surface of the lymphoma cells and sending out its microscopic smart bombs to attack those cells: but, then, the little radioactive hitchhikers deliver their own payload as well, making it a one-two punch. Dr. Lerner's office is not set up to administer Bexxar or Zevalin, but he sometimes refers patients to Jersey Shore Medical Center, which is licensed to deliver these treatments. Bexxar and Zevalin are new drugs, he cautions, and it's still not clear what their long-term effects are. There's some chance the radioactivity could cause long-term damage to my bone marrow – and, since, at age 50, I'm looking ahead to many years of living with lymphoma, this is something he advises I weigh carefully.
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I also mention that, the first time I conferred with Dr. Portlock at Memorial Sloan-Kettering, she suggested I consider a clinical trial for a new cancer vaccine protocol. This clinical trial was limited to newly-diagnosed indolent lymphoma patients – so, once the MSKCC pathologist found aggressive as well as indolent cells in my tissue sample, that deal was off. Although vaccine treatments are not yet generally available, should Dr. Portlock be aware of another clinical trial for which I'd qualify, that would give me yet another treatment option:
• (6) Vaccine therapy – Cancer "vaccines" are quite different from any other kind of vaccine. They're not so much a means of preventing disease, as a way of treating it. If I were to qualify for vaccine therapy, a sample of my malignant cells would be harvested through another biopsy, and sent off to a laboratory. In the lab, a custom vaccine would be cultured from the malignant cells, which would then be injected back into my body at regular intervals, over a period of time. (The clinical trial I was briefly looking at made use of monthly injections over a two-year period.) The vaccine would essentially teach my own immune system how to fight off the cancer.
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He's just laying out all the possible options, at this point. This is an indolent lymphoma, so we have time.
I feel even more confidence in Dr. Lerner than I did before. He takes the time to explain things, and he seems naturally inclined to take a collaborative approach – not only with professional colleagues like Dr. Portlock, but also with his patients. He doesn't seem to let his ego get in the way: when there are multiple options to be weighed, he's not afraid to admit the complexity of the situation.
Stopping at the scheduling desk on the way out, I book a bone-marrow biopsy for Wednesday of next week. Later, after my return home, I get a call from one of Dr. Lerner's staff, saying that Atlantic Medical Imaging can squeeze me in for a PET/CT scan on Monday morning. A subsequent call from Atlantic confirms that my insurance company readily approved it, so we're good to go.
And how am I doing, in the midst of all this? I'm doing OK. From the time those swollen lymph nodes showed up on my last PET/CT scan back in March, the signs have been pointing to a relapse – so, it's no surprise. I've had plenty of time to get used to the possibility, and there's a certain comfort in finally emerging out of the fog of uncertainty. The fact that there are no aggressive cells in the tissue sample is good news, indeed – probably the best news I could have expected.