We should know better by now ...

We should know better than to make assumptions about the meanings of test results before we've talked to the doctors ... they're the ones with the years of medical training after all! The tumor markers we were worried about were not a cause for concern for my doctor at all. He said that usually they wouldn't even check tumor markers until after four treatments, but he wanted to check them after two, just to be sure they weren't skyrocketing. I'm not sure where we got the idea that they should have dropped quite a bit (wishful thinking, perhaps?), but it isn't the first time we've assumed incorrectly and worried ourselves needlessly. Maybe someday we'll learn not to do that to ourselves?!?

My white blood count was low yesterday (as expected), so I got a neupogen shot to bring it back up. I also scheduled a brain MRI for Monday to get a look at the pituitary tumor. I'll get results next Thursday, and depending on what it shows, we'll go back to see the neurosurgeon at U of Chicago. I discussed things with my radiation oncologist last week, and he thought that it sounded like something he could treat with stereotactic radiosurgery (a highly focused beam of radiation given in one dose rather than fractionated over several days or weeks like the radiation I had to the chest wall after my mastectomy) if it started causing symptoms (vision problems, headaches, etc.). I'm not having any symptoms currently - the headaches have disappeared, so I'm hopeful that the MRI will show that the tumor has shrunk again. But if not, I think we have some good treatment options to consider.

I will get one more Taxol/Carboplatin/Herceptin treatment on March 10th and then I'll get another liver MRI to see how that treatment is working. I'm starting to get some neuropathy (numbness & tingling) in my fingertips and the bottom of my feet, so I'll only be able to tolerate a few more treatments before I have to discontinue Taxol. Hopefully, the TCH will do its job and knock down the liver tumors before that happens. My radiation oncologist also said that if most of the tumors on my liver stay small and stable, and just the one is growing, I could be a candidate for radiofrequency ablation on that one tumor. So we're hoping for the best with this treatment, but I'm encouraged that there are still several options available to me going forward. One step at a time, though ... I try not to worry about the future too much because as Alan said ... it rarely turns out the way we think it will anyway!

21 Feb - It Never Goes Quite Like You Think

Got another cancer curve-ball yesterday: Sarah called and got her tumor marker results and instead of going way down like we expected (because Taxol-Carboplatin is one of the strongest chemo combos), one number held steady and one went up a bit.
We're not really sure what to make of it yet. CA27-29 went from 95.2 to 91.6 (normal is <14) and CEA went up from 49.1 to 58.4 (normal is <2.5). This may not mean that the chemo isn't working, but it definitely introduces some doubt. We haven't talked to the oncologist about it yet but expect that we'll need another set of tumor markers and an MRI of Sarah's liver to better understand what the deal is before making any treatment change decisions. More to follow next week. Nothing can be done for the next two weeks because Sarah has to recover from this past Monday's Taxol-Carbo dose before we can do something different - that gives us some time to talk it through with the docs.

20 Feb Update

Time for a long-overdue update tonight...
Sarah and I had a great Valentine's Day - got to go out together for dinner and just enjoy each other's company for a while. Then this last weekend was pretty full for Ben and me: we went to the Indian Guides' winter camp-out (yes, we slept in heated cabins!). There was plenty of snow so we had a blast sledding and doing general winter stuff outdoors!
Sarah and I went in to see the UC neurosurgeon and also a UC radiation oncologist and both agreed that if we could manage the anxiety over Sarah having a possible brain met, we should wait until another scan shows us how this pituitary growth is reacting to the latest chemo. That next scan (a brain MRI) will be done in a few weeks so we will gather the experts once we have the results. Also, we discussed treatment options with Sarah's main oncologist and we much better understand the risk of this met spreading: since this pituitary met (?) formed near small "end-of-the-line" blood vessels, it is unlikely to spread to other areas of the brain via the bloodstream which is one of the few main modes of spread. It is expected to just grow or shrink at its current location at the pituitary. Future brain mets, if any, would have to come through the main blood supply from the body rather than from the pituitary growth. This was a great relief to both of us and lowered the sense of urgency on brain surgery, especially if the growth is being controlled by chemo.
Also, Sarah just got her 3rd treatment of Taxol/Carboplatin this Monday and is managing through the first few days of "chemo week." She seems to be weathering it ok except for fatigue in the evenings. Thankfully, very little nausea this time. This is also the cycle when tumor markers were run, so we should get those results tomorrow (Wed) and have some indication of how effective this chemo is so far. We're hoping for low numbers!

Ben's new smile

Ben finally lost his first front tooth! It had been loose for weeks and was barely hanging on when we convinced him to wiggle it out tonight. He was so proud of himself ... he showed everyone at our church's pancake supper tonight. You can see the new gap in the picture above.

We've got a huge winter storm bearing down on us tonight. It will most likely be a snow day tomorrow, which means I won't make it to my appointments at U of Chicago. I talked to my oncologist yesterday, who surprised me with his enthusiasm about the latest blood test results. He thought it was great news that my prolactin levels are normal again and that it indicates that the chemo is controlling the tumor ... no need to do anything at this point. He feels strongly that I should not do radiation and that we can keep an eye on things with MRIs and repeat prolactin levels. He also told me that the chemo I'm doing does cross the blood/brain barrier (I could swear I've been told and read that it does not ???). Anyway, it looks like I will have to wait another week to talk to the neurosurgeon and get his opinion. But I just remembered that I have a check-up with my radiation oncologist scheduled for next Tuesday (an appointment I made 6 months ago!), so I am looking forward to bringing him up to speed and getting his opinion before I go back to U of C.

As you can see, things are pretty confusing around here right now, but I think it is slowly becoming apparent that the tumor on my pituitary is most likely a breast cancer met. Brain mets have been my biggest fear all along, and now it seems I've been living with one for almost a year (probably longer). Thankfully this one hasn't spread and isn't causing any of the scary symptoms that many brain mets do. So I think I'll hold off on freaking out and count my blessings for now :)