CT Results - The Good News and the Bad News

Hello, all. I finally got my results yesterday afternoon. I'm going to share here my post on the Hodgkins board detailing the results of that conversation:

Alright. My oncologist called me late this afternoon and gave me the lowdown.

The node that they said they couldn't feel and seemed to be gone is in fact 2.3 x 2.9 cm. So that was disappointing, because we got our hopes up, you know? The good news is that it is down from a starting point of 3.6 x 3.9, and they define "chemo responsiveness" as being able to get a mass down 50% or more from its original size after 2 rounds of ICE. They multiply 3.6 by 3.9 to get a starting point (14.04) and divide it by its point after the 2 treatments (so in this case, 6.07) -- so I'm more than past the 50% mark-- and with one mini and one full ICE....so they consider it a "dramatic" response. The thing is, with the mass at the size it is, they move forward with treatment. Which, of course, is a good thing!

Emory follows the treatment methodologies of Sloan Kettering, so for a person with my profile, they give a set treatment. My profile: in remission before end of ABVD (in my case, after 3 cycles), in remission for more than a year (in my case, 1 year and 2 months), having a relapse in one site only (as opposed to a systemic one), and being asymptomatic at the time of relapse. Sloan Kettering's treatment: 2 cycles of ICE, go to collection, radiate the affected area, then go to transplant. The oncologist (who, by the way, was enormously patient and sensitive with me) said that for patients with my profile, who received this treatment, the "cure" rate at 3 1/2 years out (that's as far as they've gotten) is 83%. So that was really encouraging!! (And not at all what I expected, to be honest.)

Although I was extremely responsive to ICE, they feel that radiation is the best course of action, since my relapse is not systemic, but rather isolated to just one spot. By radiating the area, they can target the single mass with no additional risk to my ability to produce stem cells for the transplant.

So, providing the PET scan I have next Wednesday is negative, the schedule now will be: lots of tests next Tuesday and Wednesday, including a PET on Wednesday; Neupogen and AMD3100 just prior to collection, which will occur the following week (in the interim, they'll switch my port to a temporary 3-lumen octopus one and then switch it back to a regular port for the month after collection); radiation for I think he said 4 weeks will commence one week after collection -- so like 2 1/2 weeks from now; then I'll go into the hospital for 6 days of high dose chemo before the transplant and stay in for the transplant and 2-3 weeks to recover my counts.

Conversely, if the PET is positive, I'll have the tests and go to collection before doing a round of some kind of chemo that's higher dose than ICE before starting radiation.

Of course I'm sort of reeling from what seems to me to be a new course of action. Lorraine remembers the oncologist at the original meeting referring to radiation. (The director -- it seems that I've been transferred to this member of his team who looked after me when I was hospitalized for ICE -- who knew? I guess I didn't get that memo. Not complaining, because I love this guy -- he's been very gentle and communicative with me, and he works within a pretty expert team, so I know I'm in good hands and a recipient of all of their collective knowledge and experience.) I don't remember hearing anything about radiation, but you know how it is -- that's why it's always a good idea to get more than your set of ears in the room.

I'm vacillating between feeling just so sad and disappointed and upset, and chewing myself out for being an ungrateful baby. I still am doing well (he said I'm "right on track,") and I still am, I'm told, going to end up in remission going into this, so I need to just open my mind and shut my mouth. If I get to the transplant a month later than I'd planned, then that's a small price to pay for getting set up for success going into this thing. Right? (These are the conversations I'm having with myself. )

Anyway, that's my update. What a freaking rollercoaster! I'll find out more on Tuesday and Wednesday -- those are the big test/teach days. We'll go to an SCT orientation and spend some time with my transplant nurse coordinator as well as the research nurse, who will talk to me about the AMD3100 study in which I'm participating.

I seem to have misplaced my inner Zen-master, but I'm sure she'll be back tomorrow. For now I'm sort of weepy and sad and scared and disappointed. Tomorrow will bring a new outlook though -- it's mind over matter, and I'll make up my mind to be optimistic again. After all, the man said 83%! Gotta love that number, right?

I'm doing a bit better today, but it's a little disappointing. On the upside, it will allow more time in my pool this summer!

More anon.