I met today with the Lymphoma specialist at Yale, Dr. C. The quick summary is that nothing has changed, but we learned a little more about this lymphoma and about treatment options.
Our big question (and one that I know is out there among my readers) was, "Why should we do this waiting thing? Why not treat it now?"
The answer is that this type of low-grade, less-aggressive lymphoma doesn't repsond well to conventional therapies like chemo and radiation, at least not when it has spread beyond one area. Mine has spread. Radiation seems like it isn't an option anymore for that reason. Chemo might take it out, but the lymphoma would likely come back. So there's no point in taking the time, expense, and potential side effects of a conventional therapy if I'd just have to do it all over again. We can hold off because I'm feeling OK right now, not showing other outward symptoms, and generally living a "normal" life at the moment. And while it's a stage 3, spread to several points in the body, only the lymph node near my hipbone (the one I had biopsied) is really "hot" right now. The others are fairly faint (though present) on the scan.
When it does come time to treat, we can possible try some other therapies like bone marrow/stem cell transplants (that's where my generous brother comes in), which have worked decently. He talked about another interesting therapy that's being used more: a lymph node is removed, then chemo wipes out the lymphoma, and then while the immune system is recovering, they take the lymph node sample and make a vaccine from that, then inject it, forcing the immune system to find a way to fight off the lymphoma when it returns again. Still in trials, but again, looks promising. Interesting stuff.
The final reason for holding off is that once you try a therapy, even if it works temporarily, you usually can't try it a second time, should the lymphoma come back. So not using up a treatment for now means more options later ("more arrows in our quiver" as he put it).
It could be months, or even years, before the lymphoma progresses enough to need treatment. And that's another reason for waiting: when I need a treatment, these treatments might be more advanced, with more likelihood that they'll work. Lymphomas tend to be among the most often studied cancers, so there are lots of possibilities out there that people are working on.
We also asked about the nature of this lymphoma. It is possible, he said, that this could at some point transform from a low-grade to a higher grade, more aggressive lymphoma. That would require different possibilities for treatment. But we'd likely catch it quickly, given that I'll be examined monthly, and if I feel any changes in my health, we can begin exploring what's going on right away with more specific tests.
Dr. C is a professor at Yale Med School, so he's going to discuss my case today with the other oncologists, residents, and interns in the department. One of them may come up with something different for a treatment, but it's not likely that we'll do anything different. As he put it, "If you ask 10 oncologists for an opinion, you'll probably get 12 different answers." So I don't know if, at this point, we'll go for a third opinion. Maybe once it's time to start a treatment, whenever that might be, we'll go to Dana Farber and see if there's something more cutting edge happening. But for now, it seems like we'll kkep on watching and waiting.
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Before I saw Dr. C, I met with a resident or fellow, who took my medical history and asked me a bunch of questions. Pretty standard questions, that kind of "How are you feeling today?" or "What brings you in here today?" variety.
But what he asked was, "What is concerning you most today?"
I answered, "Well, what concerns me most is that I appear to have cancer."
He kind of stared at me blankly for a few seconds, and then said, "I guess I should have asked that differently."
Yes, Dr. Chuckles, you should have.
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For those of you who have asked, we enjoyed Rent Saturday night. It featured Anwar Robinson, the cute voice teacher from season 4 of American Idol, in the role of Tom Collins. He was decent, considering it was his first acting job. They all had good voices, though I think the guy who played Roger was great (can't remember his name, but he was the first South African Idol winner. As Randy might say, Dawg, that dude could blow).
I think, though, that if I had seen it when it first came out, I would have been at an age to appreciate it more. The bohemian, anti-establishment message was a little lost of me. I found myself thinking, "You're cold because your landlord padlocked your building because you haven't paid your rent in a year, and now you're squatting in your old apartment? I have a good idea -- get a job."
Ah, how things change when you hit 40, have kids, and get tenure.
(Who was it that said, "The tenured die a thousand small deaths"? Actually, it was me. Like any good professor, I love to quote myself.)
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Dr. C also did another blood test. He's going to call sometime about what his colleagues have to say. So maybe I'll have something more soon. Check back tomorrow, maybe Wednesday.
Hi Bob:
ReplyDeleteSo, when you saw Rent, did you have a chance to take Anwar aside and let him know how disappointed I was at his lackluster performances toward the end of his Idol season? Cute don't get you everything, you know.
Glad to hear about the treatment details. That helps me understand the "waiting" a bit better (I was not in the "let's wait" camp until you explained it).
Kelly
(only known as "Professor Ritter" here due to my account ID for school. Too lazy to create something else)
Bob -
ReplyDeleteThanks for keeping us all up to date. Sounds like more good news. O.K. new (vs bad). The alternative treatmentts sound intersting.
The offer to use me as a bone marrow donor still stands. Besides knocking this NHL out, you may stand a good chance to latch on to my dashing good looks, and boysih charm.
The only condition is that they give me an i.v. of Jim Beam (or Old No 7 at the least).
Mike
(your older, and eternally charming brother)
i don't like Dr. Chuckles, twit,anywho you can have my bone marrow if need be also :),thanks for the update, keeping you in our prayers always.
ReplyDeletexxooChristine, Joey, Aunt Theresa, and Nikko
uncle bob, you can have my bone marrow too, im getting to be a pro at iv's and stuff so im sure that will be easy..i love you
ReplyDelete-nicole
Nicole,
ReplyDeleteI appreciate the offer. Thank you.
My fear, though, is that if I have your stem cells, I'll end up with a weird love of emo music, and I'd be a worse driver than even your father. On the other hand, my texting skills will increase, and I may end up with six pack abs.
So I'll have to think about it....
I like the way this entry worked because the meeting with the "specialist" at the end is the professor wisecracking tenure who teaches Dr. Chuckles how to ask q's...very cool, Wildo
ReplyDeleteyou know, having unreal texting skills and a 6- pack wouldnt be bad at all! also, im a pretty good driver..i got my licence on saturday :-)
ReplyDelete