I had scans last week to see how my most recent cycles of chemotherapy had worked, and they were basically static. There had been two spots with small nodes that are cancerous on the last scan - one in my chest, one near my liver - that had shrunk just the tiniest amount after my most recent cycle of chemotherapy. But, everything looks about the same.
It's disappointing, but not shocking. I am sad, but I was significantly more panicky when I didn't yet know, and was waiting for information. I feel better now that there's some semblance of a plan.
I spoke with my oncologist in Chicago, and we advanced a conversation we had already begun about the options in the event of this type of result. One choice was to proceed directly to the transplant, but ideally, I would be in a complete remission going in, in order to minimize the disease burden on the donor cells. So my doctor has suggested a "bridge" to the transplant, in the form of one more cycle of therapy: a brand new drug called SGN 35.
SGN 35 is an antibody that attacks only the unique Hodgkin's cells. This means that it is minimally toxic to the rest of my body, and that it will not be an aggressive therapy. It's administered once every three weeks, and in theory, I should feel very well between treatments.
It's so new that it's not yet FDA approved because trials are just concluding. But my oncologist has gotten permission for me to get the therapy on what's known as "a compassionate use" basis. The drug is administered one time every three weeks. I will have a minimum of three doses, depending on how well it works. It will be administered in Chicago, but if all goes as planned, I will be able to go back and forth between Chicago and DC and continue more-or-less as normal. Here's some additional information about how the drug works from a blog that includes some helpful links. I've also found a press release announcing a paper and presentation on the drug which I think puts things into easily-understood terms.
So it looks like my plan has changed again, and the transplant has been delayed again. I am wrapping my head around it all, but truthfully, I am mainly experiencing relief to 1) have a plan again - even if it's just for the short term and 2) have a couple of months when I'll, at least theoretically, feel better. I've spent the last months feeling sick, trying to simultaneously function normally, and cope with only being able to plan for a week in advance. Few things frustrate me more.
Seems safe to say that for at least the next 10 weeks, I will be coming to Chicago every three weeks for the treatment. I am hopeful that I will be able to start this regiment soon, perhaps even while I'm home for Thanksgiving. As soon as everything is set, I will let you know. I'm deeply looking forward to getting some time at home and give thanks for everything I have to be grateful for.