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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Here we go again....

I had a PET/CT on May 1st, which showed 4 small active spots on my liver. Dr. Kaplan described them as the size of "salt and pepper". The good news is they're small, and the bad news is the hormone treatment I was on didn't work, so I'm back to chemo.

Even though I wasn't surprised (because my cancer marker numbers have been going up), I had a small tantrum in Dr. Kaplan's office. I told him I didn't want to go back to chemo, but if I had to, I'd like to wait until the kids go back to school in the fall (I knew I was being silly, but Dr. Kaplan didn't think it was funny).

He gave me 3 options. The first was to go back to abraxane because I did so well on it the first time. I stopped receiving it because I didn't need it anymore, not because it wasn't working, so it will likely work again. I understand that, but I didn't like that option because I'd need a new port-a-cath, plus I'm well aware of the side effects and I'm not ready to go back to them. And I kind of like my hair.

The second option was also an I.V. chemo that has fewer side effects, but being "down" a couple days a week and losing my hair are on the list.   Next, please......

I decided to start with Xeloda, which is an oral chemo I take twice a day at home. Its an interesting drug. It doesn't become active until its gone through the blood stream and "finds" the cancer cells.  Once inside the cells, it converts to 5 FU (no kidding - it stands for Flourouracil) and attacks the cancer cell's production of DNA and RNA, thus (hopefully) killing the cell. It does affect other cells, but the effects aren't as widespread as with I.V. chemo.

As expected, the main side effect of Xeloda is fatigue, which will get worse with each cycle. Another common side effect is "hand/foot syndrome" which causes burning, redness and peeling. I'm taking megadoses of vitamin B6 and have lotions which are supposed to help, but unfortunately I did get painful blisters on my feet at the end of the first cycle. As a result, I'm already on an extended break from chemo (an extra week) while my feet heal. When I start taking it again, I'll be on a lower dose. I'm hoping that allows me to continue on this track.

Because I take it every day for 2 weeks and then have one week off, the effects will increase over those two weeks and my week off will be a true recovery week. One "good" thing about abraxane was that I felt pretty good at the beginning of my week off, because it had already been 7 days since my last treatment. On the other hand, if the side effects aren't as bad with Xeloda, I won't need as much recovery. Time will tell.

My next scan will be in August, but I'm not sure what will happen if my cancer marker number continues to go up. Dr. Kaplan did say we have time to figure it out because the tumors are so small. If the Xeloda does its job, I'll probably take it for at least 3-6 months after the scan. If it's not working or I don't tolerate the new dose well, I'll switch to "Plan B", whatever that is.

To be honest, I'm not happy. I'm not happy that it's only been 2 years (a little less) since I stopped chemo and the first remission is usually the longest. I'm not happy that the side effects may impact our summer. I'm not happy that I have to tell people the cancer is back. Even though this is a "lighter" version than the first time, it's not news that anyone wants to hear and I don't like putting people in the position of figuring out how to react.

I've been struggling with these emotions and trying to figure out the best way to handle them (and the recurrence in general).  Dr. Kaplan asked me how I was doing and I said, "Better, but I'm still questioning my treatment decision and wondering if I should be complaining about blisters as long as Xeloda does its job."   He told me I'm doing everything right and he knows that I'm a Warrior who pushes through as much as I can. I'm not sure I believe that, but it was just what I needed to hear.

I did cross Occupational Therapy off my list last week. I still have some things to work on, but I can finish the final steps at home. I saw the orthopedist last week and he said, "It's hard work to get over a broken wrist, isn't it? But you did it and there are worse things." Yeah, I know.

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The fun never ends.......

After 9 weeks in a cast and 2 weeks in a brace, I finally have my arm back. Mostly.

I had the pins removed in the doctor's office, and although the first two came out easily, the doctor said the third one was going to be difficult and we could either go back to to the operating room or he could continue and it would hurt. It did hurt and I still have mild-moderate nerve pain in my thumb and through my palm and wrist. By the way - he gave me the "pins", which look more like nails. No wonder they bothered me!

I have some mobility back, but my wrist is weak (I can't carry a cup of tea with my right hand) and there are things I still can't do (turn a doorknob, use a spoon correctly). I started Occupational Therapy two weeks ago, which is helping. I'm thankful that the clinic is close by and I like the therapist.

In medical news:

My cancer marker numbers have been creeping up, but they increased even more over the last three months. Those numbers, combined with my last scan which showed a "questionable" spot on my lymph node, led Dr. Kaplan to change my oral medication from Tamoxifen to Arimidex. Arimidex is still a hormone treatment, but it works in a slightly different way than Tamoxifen. It has been shown to work well for women who are exactly where I am now (were on Tamoxifen and then had a recurrence), which is reassuring. The major side effects are bone thinning/osteoporosis and increased cholesterol, which will be monitored. Minor side effects are fatigue, moodiness and sleep disruption. I'm still adjusting to it, but I have fewer side effects than when I first started taking it (I'm on month 2). The drug takes 9-12 weeks to work, so my next scan is scheduled for May 1st.

I'm a little concerned because Tamoxifen usually works for at least two years, and sometimes much longer (10 years!). I'm short of that at 21 months, but Dr. Kaplan said that's not an indication of how well I'll do on other treatments. To be honest, I have trouble believing that. I find my mind wandering to "what ifs" and making (not-so-funny) jokes about hoping I won't have to go back to chemo until September, because it will be easier when the kids are in school. And saying that I can't go back now because my hair has just reached a decent length. And I don't want matching port-a-cath scars. I still have a red line from my port removal a year ago. I know I have to trust Dr. Kaplan and continue with my mantra, "Today is Good". Because it is.

The kids are doing great and enjoying school. Olivia loves gymnastics and the boys started swimming lessons again. We're going to a Mariner's game this month, which will be the boys' first "big game".

Happy Spring to All!

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Although a lot has happened since I last wrote, this will be a short update because I'm typing with my left hand. Many of you know that I went for a walk on the 31st, slipped on an icy area and broke my wrist. I had surgery on the 18th because it wasn't healing properly. I know I'll be happy I did it, but who knew 3 little pins could cause so much pain?

From the beginning, I've had a cast that goes past my elbow, which limits what I can do. From big things like driving, to making myself pretty with hair and make-up, to taking the cap off the toothpaste. I think (hope!) everything will be easier when I get a short cast on January 28th.

I stopped receiving Avastin in December because my kidneys needed a break. I now go in for blood work and see Dr. Kaplan every 6 weeks and I'll continue to get scans every 3 months. As I told Dr. Kaplan, "Its great that I won't have that strong drug in my system.            But, its also nerve wracking!"

I wasn't sure if I'd be able to have my January PET scan with a bulky cast and continued discomfort, but my wrist felt a little better (pre-surgery!) and I was able to have one in mid-January. There's a small spot on one lymph node, but it's unclear what it is, so for now it will be monitored. Everything else looked good. If Dr. Kaplan isn't worried, then neither am I.

I'll write again when I can use both hands!

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