While I was at the Cancer Center on Monday for my last Herceptin infusion, I also had an appointment with Dr. Li. I had called him the previous week to discuss my nausea associated with Tamoxifen. He decided I should come in and see him to discuss. Luckily, he was able to squeak me in before my Herceptin appointment, so I didn’t have to make a special trip.
I was in a new room this time – a special one, it turns out.
An escape ladder in the corner – for just in case!
This room had a ladder to the roof in the corner. Just in case you need to make a run from bad news? Who knows. It was amusing, though.
Dr. Li hadn’t heard of anyone feeling nauseous on Tamoxifen. I asked if there was another drug or a different formulation that I could take, but that wasn’t an option because I was pre-menopausal. There was the option to make me menopausal, through surgery or monthly injections. However, after reviewing my cancer characteristics and reminding himself that the cancer had come back <1% estrogen positive and ~20% progesterone positive, he decided it wasn’t worth it. The benefit I’d get from the treatment wouldn’t outweigh the costs of the treatment. He advised me to try the Tamoxifen again, but if I still felt nauseous, to just not take it. Now I need to decide whether or not I want to retry the Tamoxifen and take it for a few months. Do I really want to feel nauseous for that long on the possibility that it will go away and I have to take the drug for years? Such decisions…
Monday I called two of my doctors, which meant I was on the phone five or six times with one office or the other. Miss Adventure asked me why I was on the phone so much on Monday, and I had to explain to her the inefficiency of calling doctor’s offices and leaving a message with the nurse who calls you back to find out what you want and then needs to talk to the doctor, so they’ll call you back again…. Needless to say, the phone kept ringing.
I called Dr. Kang first. I wanted to find out when I could schedule my exchange surgery. I’m teaching in the fall again, so I’d like to be able to work around the surgery. From what I’ve read, I’ll only need a couple of days to recover from the surgery. If I can get the surgery on a Thursday or Friday, I won’t have to miss any teaching days, but who knows what his hospital schedule is. The nurse called back saying Dr. Kang wanted to see me to see if he could schedule the surgery before October. Really? Something happening faster than expected? That would be totally awesome. Now I just need to get this scab on my scar healed before I see him in August.
The second call was to Dr. Li’s office to talk about my Tamoxifen prescription. I’d stopped taking it because of the nausea. The nurse’s initial comment was just to take an anti-nausea drug along with the Tamoxifen. No, I don’t think I’ll be taking one drug to minimize the side effects of another drug that’s offering me minimal benefits for the next couple of years. The end result (after several phone calls) was Dr. Li wanted to see me because “nausea isn’t a typical side effect of Tamoxifen.” Great, now I’m all worried that the nausea is caused by the Tamoxifen interacting with cancer cells somewhere inside me. How to solve that problem – do a little research on the internet. Turns out, nausea is a side effect in 10-15% of women who take it. Some people just live with the nausea for years. In others, it seems to go away after a month or so when your body adjusts to it. I’m willing to try it for a month or two to see if the nausea subsides. We’ll see what he has to say when I see him on Monday.
The last time I saw Dr. Li, he decided to start me on Tamoxifen, which I would be taking for 10 years. I was not too pleased about this long-term drug taking, especially since my cancer was estrogen negative and only weakly progesterone positive. I did fill the prescription, but I didn’t start taking it right away. Instead, I did a little research on the internet (of course). I did find a couple of reasons that the Tamoxifen prescription made sense. The main reason is that cancer tends to be very heterogeneous. The pathologist can only test a bit of the cancer, and it’s highly possible that a different part of the cancer would be sensitive to the hormones. Tamoxifen tends to have minimal side effects, so the cost-benefit analysis usually comes out on the side of taking Tamoxifen.
So, I let the prescription sit on the counter for a week or so, but I started taking it a couple of weeks ago, along with some iron pills. In retrospect, I should have only started one new drug at a time. I started feeling mildly nauseous, pretty much constantly, and I wasn’t sure if it was the iron or the Tamoxifen. Time for some experimentation. First, I stopped the iron pills, but not the Tamoxifen and the nausea was still there. OK, not the iron. Next, I stopped the Tamoxifen and sure enough, the nausea went away. I’ll try taking the Tamoxifen once more to see if the nausea comes back. Somehow I think it will, at which point I’ll be calling Dr. Li to change the prescription. If I was only taking the drug for a short time, I could do it because the nausea isn’t too bad. However, I’m not going to spend years feeling slightly nauseous, and I’m not going to take another drug to make the first drug not make me nauseous.
I think everyone’s getting a bit tired of chemo wiping me out every three weeks. Tempers have been a bit short and it’s been hard to see the good choices these past few days. It doesn’t help that the weather has changed and it’s no longer fun to go out and play. Good thing Miss Adventure has her gymnastics and Mr. Curiosity has started soccer so they have some physical outlet.
I did realize I would not be at my best since this weekend and made plans for something fun for the kids. They got a sleepover Saturday night and spent the entire next day at the friends’ house. This gave me some much-needed down time to just rest. I find it very difficult to rest before I’m tired, but my body really appreciates the consideration and chance to recuperate.
The Tuesday after chemo turns out to be mentally a very difficult day. Any time I’ve felt like I’m never going to get better and I’ll be stuck feeling awful forever, it turns out it’s the Tuesday after chemo. This time I was more prepared and decided it would not be a school day for the kids. I did not need to hassle them on top of my internal negative monologue. I also planned for the kids to go to a friend’s house for dinner. That was my lifeline. All day, as I was irrationally annoyed at every little thing, I just kept reminding myself they would be leaving at 4:15. Sadly, even when I know I’m being irrational, I can’t stop myself from doing it.
The Wednesday after chemo is always my “high nausea day” so today my mother came down to help me. I did such a good job at preventing the nausea and resting before it was a problem that I thought I was clear today and didn’t need an afternoon on the couch. I was soon disabused of that notion. Turns out, resting is a good idea and keeps the nausea at bay just fine. If I try to do anything else, though, the nausea comes creeping back.
But, that should be the worst of it for this time, and there’s only one cycle left! Five down, one to go! I’m thinking endgame here!
Alternate title: The iron infusion seems to be working
One thing I find fascinating about the time after chemo is how alike and yet not the side effects are. The major side effects seem to ebb and flow in a similar pattern, but each time has had unique aspects to it. Let me give you some examples.
The first time around, I was completely exhausted in the week following chemo. I’m sure it was a combination of I wasn’t as careful to rest (because I didn’t know what the fatigue would feel like) and the chemo drugs were doing quite a number on my cells. Regardless, I was tired, and as an added bonus, not hungry for several days. The second time around, I wasn’t near as tired (my kids being out of the house for several days probably contributed to that as well as me taking better care of myself), but my mouth just tasted nasty all the time.
This time around, I’m even less tired (I haven’t napped, although I have laid down to rest my eyes at times), but I don’t really have the energy to do much of anything. It’s a weird dichotomy flipping between I’m not tired enough to nap, but I’m not energetic enough to do anything but sit on the couch. Frankly, I’ve gotten bored the past two days and that just means I think more about the low-level nausea that’s pretty much constant, and I feel icky. (In case you’re wondering, icky is a technical term, thank you very much.)
StatsGuy did manage to put it in a positive note – the Venofer infusion I had at the end of chemo has probably given me a boost of energy that I didn’t have the past two times. Instead of sleeping through the icky feeling, I’m awake during it. Too bad I don’t have enough energy to actually DO something. Oh well, I did make myself a note of things I could do that didn’t take much energy, so I’ll have to try to check something off that list tomorrow instead of just being bored.
Chemo was five days ago, and I’m starting to come out from the fog of fatigue. We had an hour and a half chemo education class before I even went through chemo, but it’s hard to believe any of those side effects will actually happen to me – until they do, at which point I just want to feel not sick.
I’ve been making the comparison of chemo to pregnancy – there’s all these potential changes that you’ll experience, but you’ll probably only experience a subset of all the possibles. Everyone warns you about all of them, though. At this point, the hardest to deal with has been the fatigue. The day after chemo was great – no problems whatsoever, and my energy level was normal. I tried really hard not to push it too hard, since I knew I was working on borrowed time. Fatigue was the one side effect the doctor kept mentioning, so I knew it was coming.
Chemo minus two days was when the fatigue set in, and it’s just now lifting, four days later. My body wasn’t tired so much as my mind and my head was tired. My eyes would feel like they were crossing, I was so tired. If I could get up the motivation to do something, I’d feel fine during the activity, but I’d want to go to sleep as soon as I was done. Reading or even watching TV seemed too taxing to me as well. Laying on the bed, listening to a podcast or radio show was about my speed, and by 9pm, I was ready for bed.
Today, I have felt a bit more energetic, which is great, but I’ve also had a bit more nausea. It was 2:30 before I felt like I wanted a nap, and I actually got a few things done this morning (like laundry). By late afternoon, though, my stomach was telling me to sit quietly on the couch. At least I had enough energy to do some reading for a change, and the Compazine finally seems to have taken the edge off the nausea. I don’t think the dog is getting a walk this evening, though. He’s all snuggled up on his bed anyways, so I’m not feeling too guilty for taking a night off.