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 had a check-up with my oncologist on Monday just to see how things were going. I had bloodwork a couple of days before, which came back mostly fine. I am slightly anemic, so Dr. Li recommended I start taking iron pills. I’m not too thrilled about it, but considering my multi-vitamin doesn’t contain iron (I was really surprised about that fact), I’ll probably do it. I only need one a day (or maybe every other day), which should minimize its constipation effects.
I did ask Dr. Li what he was looking for in my bloodwork (beyond the general blood counts). He explained that he’s watching to make sure my liver functions and kidney functions aren’t damaged, which would show up with some abnormal results. He’s also looking for high calcium levels, which is often a sign that the cancer has metastasized (especially to the bones) and can be a big problem. Luckily, all those chemical values were normal.
The two bad news items all had to do with the length of treatment. I asked Dr. Li how long I’d have to keep my port after my Herceptin treatments were over. His response – one to (preferably) two years. That’s the time frame that the cancer is mostly likely to recur, so the typical practice is to just leave the port in so it’s already available for treatment. That makes logical sense, but once again I was disappointed by the amount of time it takes to be done with all this cancer stuff. One to two years with my port means I’m pretty much done with my hockey career, and that is not a good thing.
Bad news number two is Dr. Li is recommending I take Tamoxifen, for the next ten years. Again, intellectually, I understand why he’s recommending this course of action (it potentially decreases the recurrence rate of the cancer with limited side effects) but TEN YEARS? I just want to go back to my old life, and it’s not happening any time soon.
And, on top of all that annoying news (it’s not really bad news – evidence of cancer is about the only bad news), I had to sit for an hour waiting for my Herceptin treatment because a new person at the Cancer Center screwed up the pharmacy order. All in all, not one of my better days at the Cancer Center.
Had a quick check-up with Dr. Li this morning before radiation. This one was easy – I didn’t even have to bloodwork beforehand. We talked a little more about whether or not I should go on Tamoxifen. It’s not something that would happen until after I’m done with radiation (although in many places they occur concurrently). The benefit to me would be minimal since the main tumor came back only 1% ER/PR positive, and the lymph node was weakly PR positive at 20%. Dr. Li is leaving it up to me whether or not I want to take the drug. I’m leaning towards no because I already got pathological remission, and the cancer was so weakly positive for progesterone, which doesn’t get as strong a benefit as estrogen to begin with. I’ll have to look up some research to see what the experts have to say.
The other thing we talked about was the addition of another drug on the market for HER2 positive breast cancers. If I were going through chemotherapy now, Dr. Li would have added Perjeta to my therapy as well. I find it fascinating that it’s barely been six months, and yet the treatment is already changing. Of course, it’s another $10,000 drug, on top of the $8,000 Herceptin, and all the other treatment I’ve been getting. I am so glad I have health insurance, and I can see why people go bankrupt trying to pay for cancer treatment.
I have to do a followup with my gynecologist (do I have one of those?) to check on the abnormality found on my ovary way back at the beginning of the treatment (when I was getting all those scans). Otherwise, I don’t have to go back for four months! Last thing I did before I left was give Dr. Li my Little Pink Houses of Hope medical paperwork so I’m cleared for the retreat in May. Then, it was over to the radiation wing, where they were having all kinds of problems since one of their machines was down. Not mine, I was selfishly happy to notice.