Friday, November 24, 2006

In the grey zone - posted by Pierre

Hmmmmm, interesting development.

Laura and I went in to see our oncologist (fancy cancer doctor) yesterday to go get a better sense of where everything is at. He had some interesting things to say. A quick recap:

-when we saw a specialist this summer (before the big biopsy surgery) he was fairly certain Laura had Hodgkin's lymphoma
-after the biopsy, the early indications was that it was not Hodgkin's, but rather B-cell lymphoma (aka non-Hodgkins), but they wanted to send off the biopsy to BC to get further testing, but in the meantime they started Laura on chemo to treat non-Hodgkins

Now the tests are back from BC and they can't say which it is, Hodgkin's or non-Hodgkin's. Our oncologist even spoke to 2 of the top oncologists in Canada, asked tons of hemotologists, and even checked research and papers, with no answers but this: grey zone lymphoma.

That is the best they can explain it (but you'd think they could come up with a fancier name). There are overlapping characteristics of both Hodgkins and non-Hodgkins which usually just doesn't happen, at least not to the degree that you couldn't see definitive, tell-tale signs that shows it to be one or the other. Thus the "grey zone". It is in between Hodgkins and non. This is very rare. In fact, there is barely any research on it and our oncologist said they would be watching her case closely and writing about in medical journals. If you do a search on Google (the knower of all!) for "grey zone lymphoma", you get a few pages, but they almost all are related to a single short article/research study done with 21 cases. No other info. As such, it is hard to know what we are dealing with.

As one of the specialists put it "I would favor that this more likely represents Hodkin's lymphoma based on experience more than anything else." The other specialist concurred. So they have switched her chemo to treat Hodgkin's. It's a whole different cocktail, so we are back at square one with the treatment.

She will have 6-8 rounds, and will have to go in every 2 weeks. The side effects are supposed to be a bit harsher with this type, so we will see how she reacts to it. Then, after those 6-8 rounds, they will probably do a PET scan to see how it is going. My assumption is that they will know better how accurate their "hunch" was by how the cancer is reacting to the chemo.

Fortunately, or unfortunatey, the rarity of this means that their is little to no information. They can't give a prognosis, or tell if it is aggressive or not. We are not worried about it as it's hard to really know if the news is good or bad. So now we just wait some more!