PET Follow-Up

Before I get to the details of my appointment with Dr. R, I want to acknowledge my niece Nicole, who apparently had a very good time Friday at her junior prom. I haven't seen all of the pictures, but I did see a great one of her in the back of the limo, giving her hair a quick fix. I can't upload the picture to the blog, but you can see it on the photo sharing site. Try the link here.

Looking good, Nicole!

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I met with Dr. R yesterday. He gave me a few more details about the PET scan, but the overall picture was what he told me over the phone -- still stable. As I mentioned, the one node in the chest has gone from 2.3 cm to 1.0 cm since November. The one under my arm measures about 1.1 cm. He said anything under 1.0 is considered normal, so that one is just barely abnormal. He couldn't get a measurement in the hip areas; there are bunch of swollen nodes there (he called it a "grape cluster"), so it's hard to tell on the scan where one ends and one begins, plus it creates an irregular shape, and there's just too much math involved for either one of us to figure out a number for the size. Suffice it to say, it's still there, and it's still big.

But not big enough to start treatment yet. We talked about when that might be. I know some doctors will begin treatment when the nodes become "bulky" (the very technical term for "really big"), though even then they can disagree on just what "bulky" means. Dr. R said he would certainly consider bulkiness, as measured by a physical exam, though would also want to look at PET scan results, plus consider any B symptoms I may or may not be feeling, plus consider how I looked, physically. (As Fred Thompson and I know, NHL effects the devastatingly handsome.)He'd want to consider all of those factors before determining when to begin treatment.

So, he's pretty conservative that way, which I'm happy about. I have the luxury of time here. As long as things continue progressing as slowly as they are, I'm in no hurry to begin treatment. Every day waiting is a day toward new and better treatments being developed.

Dr. R's conservatism extends to his treatment plan, too. We talked yesterday about treatment options, so that when treatment becomes necessary, I have a sense of what will and won't work for me, and what the possible effects might be. I think it's better to have all of that information before it becomes necessary, so I can make an informed decision. (I shared this with the online support group; they praised me for taking charge of my own situation. Damn straight.)

Anyway, the current plan would be to probably start with Rituxin, on its own. Rituxin is the antibody that I've written about before. It targets a specific protein called CD-20 that is present on lymphoma cells. We lymphomaniacs affectionately call it "Vitamin R," and it has truly revolutionized lymphoma treatment. Many people have had success using just Rutuxin alone as an initial treatment (and it's almost always a part of the chemo mix). It has the advantage of having few nasty side effects.

If there needed to be a second step, then we would try chemotherapy, and there, we have a few choices. The standard chemo for more aggressive lymphomas (unilke mine) is CHOP, usually given as CHOP-R (CHOP plus Rituxin). It's a moderately heavy-duty chemo, certainly the most aggressive used for blood cancers. One of the drugs can cause heart damage (there are always long-term side effects with any chemo treatment), so it can only be used one time, usually in six doses, spread apart every two weeks. Therefore, CHOP wouldn't be our first choice. On the chance that my lymphoma did transform into something more aggressive, the CHOP would be necessary. So we would try to hold off on that option for when it was really needed. Instead, we'd try a less agressive chemo, either CVP-R or FCR. CVP is basically CHOP without the heart damage -- it removes the "H" drug. FCR takes the "C" from CHOP, adds another drug, plus Rituxin. Dr. R seems to favor FCR. I've read about CHOP and CVP, though I don't know as much about FCR, so I'll need to do a little research there.

We talked about a few other options, including antibodies that target other proteins; certain other CHOP variations; and RadioImmuno Therapies like Bexxar and Zevalin. The RITs, which I have said I am fascinated with, are currently approved for use as a post-CHOP treatment. There's a clinical study underway that is examining it as a first-line treatment, with very good preliminary results.

We didn't even get in to stuff like stem cell transplants and other, more experimental treatments (like those cool patient-specific immunizations) that are being used when everything else fails. No need to at this point. Even if I did need them, it would likely be years from now, and there will be a whole slew of different options available by then.

So for now, we'd probably start with Rituxin, and then get gradually more aggressive. I'm good with that.

I also talked to him about possibly being involved in clinical trials. As I mentioned last post, I'm open to the idea of trying something new. As I'm reminded all the time, the only way we can know whether a new treatment works is by trying it out. So we talked about phase III trials. This means the treatment has already been tried out to see what the side effects would be, so they are known to be safe. The third phase is to show whether or not the treatement works as they had hoped. So I'd be open to trying a new treatment, or a known-effective treatment in a new and different way, assuming it didn't cut off my options later on. Dr. R and I are both going to keep an eye out for anything that fits my criteria.

That's all for now. Follicular NHL is a marathon, unfortunately; I'll likely be dealing with all of this for a long time. But it's all very exciting and hopeful, I think, knowing that so many options exist. Isabel told the doctor I read medical journal articles about chemo treatments for my own entertainment. That's a slight exaggeration, but I'm at the point where I do enjoy reading them, because I find them exciting.

I'll never stop being a nerdy English professor....