Thought I'd share another nice NHL article. This one was from the most recent Health section of the New York Times. The title pretty much says it all: "Non-Hodgkin's Lymphoma on the Rise, Along With Prospects for a Cure." It talks a little about NHL and how it is affecting so many more people than in the past, and how they can't figure out why. It also discusses some treatments and their promises. Nothing really new, but it has a nice, hopeful tone to it, so I liked it. It gets into Radio-Immuno Therapies (Bexxar and Zevalin), which I must admit I am becoming fascinated with. They're approved for use as a post-chemo treatment, but there are some clinical trials going on that investigate their use as a front-line (before chemo) treatment, with really excellent results so far.
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I go for my next PET and CT scans tomorrow morning. I wrote about this in January -- you may remember the experience as involving radioactive milkshakes, abdominal discomfort, and my shoulders falling asleep. I'm sure this seconf round will be just as much fun.
The purpose is to re-stage -- see how far (if) the lymphoma has progressed, to get a sense of just how fast (or slowly) it's growing. I won't get results until next week, when I meet with Dr. R. There are a few possibilities, though:
The scans could show it's regressing a little bit -- fNHL is known to wax and wane, get better and then get worse (and then better and then worse again).
It could show slow progression. The first PET/CT showed a very hot spot near my hip bone, where I had the node removed in January, and then some very faint spots in about five other node clusters. There could be more activity in any of those places. (Or less. Gosh I love this disease. It's like the Paula Abdul of cancers -- could be straightforward, or it could be slurring and stumbling like pain killer addict.)
It could also show aggressive progression, in nodes that are too deep to feel with a physical exam.
My guess? #2 -- slow progression. I can't help but feel those hip nodes every day or two, and some days they feel bigger, and some days they feel smaller, though it could be the scar tissue left over from the biopsy, or even fluid build-up in the space vacated by the removed node. I don't think I'm progressing too much, if at all; no other nodes popping up, and no B symptoms.
My guess is, even if there is some progression, Dr. R will recommend continuing to watch and wait. He seems conservative that way, which is just fine with me. One of the things I'll discuss with Dr. R next week, regardless of the outcome of the scans, is treatment options, for when they become necessary. As frustrating and stressful as watch and wait can be, it's nice to have the luxury of time -- time to read and learn and make informed decisions. I know lots of people with NHL and other cancers aren't so fortunate.
I'll think of all of you as I hoist my radioactive pina colada milkshake in the morning.
Bob,
ReplyDeleteWe'll be thinking of you and your nodes and hoping for another "wait and see" diagnosis.
I am sorry that the scans are so stressful - both mentally and physically. Despite our previous digression into medical marijuana discussions I am generally opposed to unnecessary medication. That said, recently two different friends were sharing stories about undergoing a minor but stressful outpatient surgery that they both had. One friend was given a very small dosage (about a quarter of a standard dose) of valium an hour before the procedure and the other had nothing. The one without the valium had a rough experience and pain that lasted three days and the other one reported being able to get through the procedure without a lot of anxiety and was on his feet in 24 hours without post-operative discomfort. The tiny amount of sedation given was just enough to take the edge off and not enough to turn him into a raging Johnny Cash-like pill popper.
Easy for me to be playing doctor here (or pusher) but I am wondering if you wouldn't experience as much muscular discomfort if you were slightly sedated and therefore more relaxed (if that is possible given the stressful nature of the tests.)
Just a thought.
Tom
Bob -
ReplyDeleteI agree with Tom. When I had my lithotripsy last month to break up my kidney stone, the Anesthesiologist (actually he was a nurse anesthetist, but I don't think I can spell nurse anesthetist) gave me what they called a "cocktail" of drugs to keep the edge off. Needless to say it worked, and knowing me, you know how "edgy" I can be at times. Obvioulsy, my choice would have been Molson Canadian in an iv drip, but he didn't seem to think that was an option.
I'd only advise that you take the sedtives under the dr's direction. I can't imagine that medical marijauna would lead to anything but school girl giggling fits, and you may not be able to hold still in the tube. Besides, if your tummy is growling, you don't want to get too relaxed. ;)
good luck
Mike
We'll be thinking of you Bob, and "cheers" to your little cocktail, hope you don't have a lot of discomfort,,good luck :)
ReplyDeletexxooChristine, Joey and Aunt Theresa & Nikko