Friday, September 20, 2013
Ugh.
I had a scan in August which showed that two of the tumors had responded to Xeloda, but the other two hadn't.
Dr. Kaplan, James and I had a long talk about my options. Dr. Kaplan again said his first choice was for me go back to my original chemo, Abraxane. I was open to that, but he also presented two treatments that were more appealing. I chose the I.V. chemo Navelbine, which has fewer side effects than Abraxane. They include:
-Decreased white and red blood cell counts, so I'll likely be giving myself shots again
-Bone pain
-Nausea
-Hair thinning (20% chance of hair loss)
-Fatigue (of course)
There are others, but those are the most common.
I got a new port-a-cath and started treatment on September 6th. I didn't want a port, but I'm actually okay with it. I appreciated that the surgeon took the time to remove some of the scar tissue and put the new port on the same side as the old one used to be. The surgeon said he preferred to keep the scars on the same side (I'm not sure why - maybe in case another procedure needs to be done on the left side?) and I'm happy that I don't have a matching set of scars.
My first treatment went fine. I had two of my favorite nurses, which made it easier to return. I got some hugs and one nurse said, "Its great to see you, but I'm sorry I have to see you", which sounds about right. Navelbine takes 30 minutes to administer (including the pre-treatment med and the saline flush), which is great. My last treatments alternated between 90 minutes and 2 hours. Navelbine is given by "push", which means the nurse uses a syringe to directly put the drug in to my port. Abraxane was a "drip", where the bag was hung and the drug dripped through a tube in to my port. There will still be days of long waits at the lab and longer waits at the treatment center, but treatment will go quickly once I get started. Sounds good to me!
I'm thankful that I asked the nurse how much of the pre-treatment steroid, Decadron, I was receiving, because she said twice as much as I used to get. Decadron helps with nausea, but also caused my weekly "down days" (36-48 hours) and I couldn't imagine getting twice as much. It took a while to reach Dr. Kaplan, but it was worth the wait because he reduced the dose. I was queasy and a little "off" for 2 days, but I think that was a good trade off for receiving less of the steroid. I was proud of myself for being assertive and getting (less of) what I needed. Dr. Kaplan said if I do well at this dose, he's willing to reduce it again. That would be nice!
Something I forgot about was that I can't sleep after I receive the steroid. I got some chores done at 2am, but eventually it wasn't fun to be wide awake in the middle of the night. Dr. Kaplan suggested Tylenol PM to help me sleep next time, which should help without giving me a "sleep med hangover" the next day. I also forgot about the odd leg pain I get, which has already started.
When we talked to the kids about my treatment, they seemed to take it in stride and only have a vague memory of the last time I had chemo. Olivia was relieved that I wasn't going to lose my hair (knock on wood), because she equates that with being "really sick" and she made no secret of the fact that she didn't like how I looked, even with a wig. The boys said, "Okay" and moved on. I was happy when all three kids asked questions later, because I was afraid they were going to internalize it or be afraid to talk to me about it. In some ways its good that they're older and in school full time, but they also have more activities, need more help with homework, etc. I'm sure we'll figure it out.
Dr. Kaplan doesn't know for sure, but there are two potentially worrisome things about this latest development. The first is that it appears that my "hormone receptive tumors" have already become hormone resistant, which removes an entire class of good drugs that I can benefit from. Its also possible that only some of my tumors mutated, which is why I had an uneven response to the Xeloda and could make the tumors hard to control in the future. On the other hand, they might not have changed at all and Abraxane happens to be one of the drugs that all of the tumors respond to evenly (which is why it's been Dr. Kaplan's first choice). I'm not going to play this game much longer (and I suspect Dr. Kaplan won't let me), so if the Navelbine doesn't work, I'll probably go back to Abraxane.
One step at a time.......
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