So much for the pituitary plan ...

I got a call yesterday from the endocrinologist's fellow. They took some blood while I was there last Wednesday to run their own hormone level tests and got the results this week. My prolactin levels were normal as were all other hormone levels. This was before I started taking the Dostinex (drug to lower prolactin levels if this were a prolactinoma). So that pretty much rules out the possibility of a prolactinoma, and they think it is most likely a breast cancer met. It could still be a non-secreting benign adenoma, but there is no way to know without having the surgery. I think they are leaning towards met because it seems to be shrinking and growing, possibly due to chemo (though chemo is not thought to cross the blood/brain barrier??). The endocrinologist doesn't think I need to have the surgery right away since I'm not having any symptoms (blurry vision, severe headaches or wacky hormone levels). He wants to see me in 6 months. The neurosurgeon wants to see me next week and wants me to meet with a radiation oncologist. I suspect he will recommend having the surgery now that a prolactinoma has been ruled out. I'm not sure why he wants me to see the radiation oncologist, but I guess I'll find out next Wednesday. I'm waiting for a call back from my medical oncologist to get his opinion, but I know that he does not think this is a breast cancer met. So he'll probably recommend against having the surgery. I don't know what to think, but I will wait to get all the opinions before making a decision.

In other news, I had treatment #2 on Monday. This round has been a bit easier with the fatigue and less grogginess, but the nausea is back, though not too badly. Steroids kept me up most of Sunday night, but I've managed to make up for most of that sleep over the past two nights. I lost huge hunks of hair in the shower on Saturday, so I'm back to the bald look:



It's not so much fun being bald in the middle of winter in Chicago. Temps today started at 2F with a wind chill of -19F! Currently it's up to 11F with a wind chill of -4F. So I have to wear a hat at all times, even while sleeping, but I do save time in the shower and after with no hair to wash/condition/dry/style :)

For now, we are going to sit tight and wait for all the opinions to come in on the pituitary tumor. It seems that the surgery is inevitable, but I don't want to rush into it and compromise the systemic treatment for the liver tumor, which I feel is a bigger threat to my health at this point. The surgery is "minimally invasive", but it's still brain surgery! We'll post another update once I get through all the doctor's appointments next week. Thank you all so much for all the support ... it really helps to know so many people are thinking of me and praying for me!

24 Jan - The Pituitary Plan

Yesterday I went with Sarah to see a neurosurgeon and an endocrinologist down at the University of Chicago Cancer Center and both agreed that Sarah's pituitary adenoma was not an immediate threat and that we have the time to try a drug treatment. She started on Dostinex today (twice a week pill with few side effects) and she'll go on with that for six weeks (in parallel with her chemo) and then do another brain MRI to see how the pituitary growth has changed. At that point we should know if Sarah will ultimately need to have the growth surgically removed.
Sam and Ben are doing fine. Ben's still playing cello and I actually will be swapping his instrument out for one in the next size up since he's grown a bit since last October. He's playing Twinkle Twinkle pretty well. :)

22 Jan - Overdue Update

Here's a quick update since it has been a while since the last post - Sarah came through the first Taxol-Carboplatin treatment fairly well. No significant nausea after this first one, but definitely fatigue which usually set in hardest near the end of the day. Sarah also felt "groggy" for a week. She's feeling fine now as we wait for the next treatment.
Sarah also saw a neuro-oncologist last week and we'll be seeing a Neuro-surgeon this Wednesday to discuss what the treatment options are for her pituitary macroadenoma. Because her prolactin levels were not super-high (although above normal) and the other hormone levels were normal, the adenoma is either a typical benign "non-secreting" pituitary growth or it's a breast cancer met (which is much less likely). Options will probably range from no treatment and periodic MRI checks to biopsy and/or removal through neurosurgery. We'll know more over the following weeks...
On a much less dramatic note, I had Lasik eye surgery last Friday and it went great. I could see 20-20 the next day and my eyes are healing up nicely - great to be free of glasses and contacts after all these years.
I'll post an update after we've talked to the neurosurgeon.

Starting a New Treatment and More Health News

The new treatment is starting today, and it is a long one! I will have to be "in the chair" for nearly 7 hours! So I thought I'd try my hand at some blogging and give an update on the latest news from cancerland. I had been having mild headaches for a few weeks ... didn't think much of them at first, but I started to notice that they were always on the left side of my head, moving from above my eye to the top of my head. I mentioned them to my doctor last week, and because the cancer had progressed in my liver, there was a chance it could have progressed elsewhere (like my brain). So he sent me for an MRI of my brain and pituitary last Thursday.

When I got a message that my doctor had called me at home this morning right before I was to come in for treatment, I knew they had found something. Fortunately, there are no new spots on my brain .... whew! But the tumor on my pituitary has grown considerably since the last scan (three months ago). It is laying on my optic nerve, and although I am not currently having any vision problems, it could cause problems in the future, so I am going to go see a neurosurgeon to discuss medical and surgical options. Although the radiologist's report says that "the marked interval enlargement since 9/2007 is highly suggestive of pituitary metastasis", my doctor assures me that it is "extremely, extremely, extremely unlikely" that it is, due to the fact that it is a solitary tumor and it's been there for at least 9 months with no new brain tumors or lesions developing. I have contacted a neurosurgeon at the University of Chicago (one of the top 10 cancer centers in the US), who specializes in neuro-oncology and pituitary tumors. Seems like I'd be in good hands there ... I am waiting for a call back, but I'm going to have my oncologist call them and see if he can get them to put a rush on it.

I've got about one more hour to kill (good thing they have wifi here!) and then we'll see how hard this treatment is on me. As Alan said before, I will lose my hair again (maybe the third time is the charm?) and fatigue is a given. Muscle aches and possibly neuropathy in my hands and feet. But I'm willing to do whatever it takes. Although the news on the brain MRI wasn't what I was hoping for, it could have been much worse, so I'm counting my blessings. And with the every three weeks schedule, I don't have to come back to the onc's office until next Thursday for blood work. That will be the longest I've gone between visits to the onc since I started back in May ... gotta count the small victories where I can find them, I figure :)