Well, look at that - I kept my promise. After my last post came after my longest stretch ever without a post, I am blogging again less than 24 hours later - the shortest time ever between posts. OK, I know it's all because so much has happened during the last few weeks that I couldn't fit it all into one post, but whatever. Details, details...
Anyway, as I mentioned in my last post, in the last few weeks while all the radiation stuff has been going on, I've also had two Herceptin treatments. The first one, back on August 25th, was the first time I'd seen Dr. Sara since my surgeries (he was traveling during my previous treatment and I saw another doctor that day in his absence).
Dr. Sara remarked on how well I'd recovered from surgery and said Dr. Attiyeh had told him he'd almost never seen anyone have to stay in the hospital for only two days after the kind of liver surgery that I had. I said, "Well, I'm an overachiever, what can I say?" :)
After the typical exam, where Dr. Sara and Deborah mentioned that my scars looked good - and that usually liver surgery results in a big horizontal scar that looks like a hockey stick, so I was lucky to have my vertical one - we sat down to talk.
Dr. Sara went over my the pathology results from both of my surgeries. Of course, Dr. Rosenbaum Smith and Dr. Attiyeh had already gone over these with me, so there were no real surprises, but when I'd seen Dr. Rosenbaum Smith she hadn't had the final report yet, so Dr. Sara went over that with my parents and me.
As Dr. RS had said, there was still quite a bit of cancer left in my breast, and I did have positive lymph nodes - 8 out of 11 to be exact. I didn't really understand the significance of the number of lymph nodes so I asked Dr. Sara if everyone has the same number. He said no - the number can vary greatly. Most people have at least 10, and some people have as many as 50. And just because I only had 11 removed (all that Dr. RS had found) doesn't mean I didn't have more at one time - the cancer could have destroyed some lymph nodes along the way.
The results showed that the chemo I'd had before surgery had had a significant effect on the cancer, but not a complete effect. Not that we expected that - we knew from my scans that there was still cancer in the breast.
One other significant thing that the pathology report did show was that 35% percent of the remaining cancer was estrogen-receptor positive. Dr. Sara said he was very pleased to see that because it meant that he would be able to give me Tamoxifen, a drug that is given to breast cancer patients who are hormone-receptor positive for five years following treatment. I've read that it can reduce the risk of a recurrence by up to 50%. Now, my original biopsy results did show that I had some estrogen resceptor positive cells, but the percentage was not exactly known - it said "10-30% percent, mostly weak". Now, we know that the percentage was high enough for the Tamoxifen to hopefully be effective. Dr. Sara also said that this was good because the estrogen receptor negative cancer tends to be more aggressive, so hopefully that means any cancer that might remain is less aggressive (meaning slower growing).
As for the liver, just as Dr. Attiyeh had said, there was still a very small amount of cancer cells found in the liver, but it was greatly reduced from what my original scans had shown, and the part that was removed had clear margins.
Dr. Sara gave me copies of both pathology reports, and I have to say they are kind of funny and kind of weird to read. Half of it I don't understand, of course, but there is a section where the "specimen" is described and it says things like "the specimen is received fresh" (ew) and "situated central on the skin surface is an unremarkable nipple" (well, exCUSE me!). Also, the masses which I presume are the remaining tumors are described as "tan" and the previous biopsy site appeared "bright orange" - who knew?
Anyway, after going through the reports, Dr. Sara said that the results - especially the fact that I had positive lymph nodes - led him to decide that I should get more chemo. There is still a risk that there could be microscopic cancer cells lurking in my body, just hunkering down until they one day decide to start colonizing. Dr. Sara said that if these results had appeared post-surgery in a patient who had not had chemo first, they would definitely give that patient chemo. And since we are being aggressive with my treatment and pulling out all the stops to cure me, not just treat, he recommends that I have more chemo.
This did not come as a shock to me. During my previous Herceptin treatment, when I'd seen another doctor while Dr. Sara was traveling, I had asked if I would need to go on Tamoxifen. When I asked this the doctor and Deborah had said that that would be up to Dr. Sara - whether he would give me more chemo or put me on Tamoxifen (turns out it will be both). It was kind of said in passing, but I caught it so I already had in mind that more chemo was a possibility.
Now the next round of chemo will not be the same as the first. Dr. Sara said that they have to change up the drugs they give me because after a while chemo regimens sort of "run their course" and are not as effective. It's hard to say for sure, but it's possible that either the chemo I had before had run its course, or that the cancer remaining was resistant to those drugs all along.
So, this time I will be getting a new drug (not new, but new to me) called Navelbine. Dr. Sara said he chose this drug over some other options (including Adriamycin, which I'd read about and knew as a nasty one - it's called the "red devil" because of its red color and harsh side effects, so I'm glad I won't be having that) because Navelbine is known to have a compound effect when given in conjunction with Herceptin. As Dr. Sara put it, Navelbine plus Herceptin is more effective together; i.e. 1 + 1 = 3, not 2.
The good news is that Navelbine is not so bad with the side effects. I will not lose my hair again, I will not have that "icky" feeling I had for a few days after chemo last time, and I will not have the dry mouth nastiness again. Also, I will not need any pre-meds, like Hydroxizine or the steroid Dexamethasone that I had to take last time, which helped contribute to some of the side effects I felt.
(As a side note, speaking of my hair... it has been coming back at a good pace over the summer. Here is a picture of me and Claire on Labor Day weekend:
Not bad, huh? As you can see, I definitely have more hair than her now! I probably never would have asked to have my hair cut this short, but I don't mind it at all. And it makes it pretty easy to get ready in the morning which is a nice bonus!)
OK, back to the chemo. There are two main side effects that I probably will experience with the Navelbine. One, it will probably affect my blood counts, which means I will need to be monitored because if my counts are too low, I won't be able to get the next treatment until they are up again. Also, I could need a shot to boost my counts if necessary (I've heard about this before - it's called Neulasta). And of course, low blood counts means that I could be at an increased risk for infection, so just as before I need to be careful about staying away from people who are sick (especially in the winter when colds and flu are rampant).
Secondly, neuropathy is a common side effect of Navelbine. This means numbness or tingling in the fingers and toes. Neuropathy was also a side effect of my previous chemo, which I thankfully didn't experience, but Dr. Sara said that my body has been through a lot, so it's very possible I will have it this time around. But it is not permanent, and goes away when treatment is complete.
One requirement when it comes to Navelbine is that they need a "good vein" to administer it, because it can cause skin and tissue problems if it leaks out while being given. This means that I need to get a portacath. A portacath is a little device that's inserted under the skin in the chest and is connected to a large vein in the neck. With a port there will be no more sticking my hand and arm trying to find a vein - everything will happen through that port. Deborah said mine will be a "power port" meaning I could have blood drawn through the port, get infusions and an IV "push" (where it goes in really fast), get contrast for PET, CT and MRI scans - everything.
I am OK with getting a port. I know that my veins are pretty shot at this point, compounded by the fact that I'm down an arm, and so this will eliminate any stress I've had about getting IVs since my "6-needle-stick" day. Plus, in a book I read earlier this year written by breast cancer survivors, one of the survivors was told by her doctor prior to chemo that she would need a port. She was very much against this because she lived in Florida and often wore bathing suits or low-cut shirts and quite frankly the port in the chest would cramp her style. (Ridiculous, I think, but I guess what's important to people can vary greatly.) So she refused to get a port and started getting her chemo through an IV. By the fifth treatment, the chemo burned through her veins and she described it as the most painful thing she'd ever experienced. After that, she got a port. So, um, yeah, I'm going to listen to the doctors on this one!
The schedule will be determined once we know how the Navelbine affects my blood counts, but most likely it will be "two weeks on, one week off". Week one will be Navelbine + Herceptin, week two will be Navelbine only, and week three I will be "off". Also, the Navelbine is given through an IV push, which means it goes in really fast - it's not like the other chemo where I sat in the chair all day while I had three different infusions. So, I should be able to go back to work afterwards, which is good.
Now, originally the timing for my treatment was going to be: radiation to the spine, radiation to the breast, then 5-6 months of chemo. However a couple weeks ago Dr. Sara's office called me and told me he wanted to speak with me, but I didn't have to come in, it could be over the phone. Of course, I immediately freaked out because I had just had my first MRI a few days before and I was scared that he was calling to tell me it had shown something new (and bad) that we didn't know about before. But if it could be done over the phone it couldn't be that bad, right?
When I finally talked to Dr. Sara - which didn't end up happening until the following day - he told me that he'd spoken to Dr. Rosenbaum Smith and Dr. Evans and they had collectively decided to switch the order of my treatment. I would still have the radiation to the spine first, but then I would have chemo and then I would have the radiation to the breast.
The reason is that the greater danger is the possibility of cancer cells lurking in my body, rather than the possibility of cancer cells lurking in my breast. The radiation is a local treatment - meaning it only treats the breast, while chemo treats the entire body. So, my docs decided it was best to get the chemo first and not wait another 6-7 weeks after the spine radiation to start the chemo.
Of course, this now means that I need to get my port sooner rather than later, and in fact I am all set with an appointment on September 29th. Getting a port is minor surgery - I will be put to sleep, although it is not a general anasthetic but rather similar to the drugs that are given when people have a procedure like a colonoscopy. I won't remember anything afterwards. The procedure itself takes about 45 minutes, and once I wake up I can go home (though someone needs to take me home since I'll probably be a little out of it). I will have a bandage on my chest where the port is and also a small one on my neck. I won't be allowed to shower for three days (ugh) while it heals, but after that having the port will not restrict me at all - I can even swim with it in!
So getting my port is next on my list, and after that chemo will start again on October 8th. I do not view needing more chemo as a setback. As I've said all along, I will do whatever it takes. So even though it means my treatment will be extended, it is OK with me. Whatever it takes!