Showing posts with label tamoxifen. Show all posts
Showing posts with label tamoxifen. Show all posts

Saturday, November 9, 2019

What a relief

I did run that 10K race today. I will confess I was extremely anxious this morning before the race started. Having already hurt myself running when I shouldn’t have, I was afraid I might be making the same mistake. I wasn’t going to wear the chest strap heart monitor, but Kent pointed out that if I ended up with cadence lock and my heart rate looked alarming, that would be not so good. So I wore it and fretted before the race started because my heart was racing from nerves. Also it was really cold with a wind that just cut through my clothes.

Enough about that . . . I’d set three goals for this race:

  1. Be smart and walk if my heart went nutty.
  2. Break one hour again
  3. Run at an average pace of 9:30 min/miles. 
I considered the last two goals to be probably out of reach since I haven’t been able to train the last three weeks. But a closed mouth doesn’t get fed so I set those goals anyway.

Long story not so long, I hit them all. I ran an average pace of 9:29, broke an hour and best of all had no heart rate issues. I mean not a one. My heart was Steady Eddie the whole way. AND in a pretty crowded 10K race of over 600 people, I placed third in my age group. Now that was a very unexpected and nice surprise!

Today marks five weeks off tamoxifen and I’m also seeing the other common side effects dwindling away. I’m still going to get those cardiac tests, they’re scheduled, and I would rather make sure all’s well with my ticker. Plus I’ve hit all my deductibles this year and I’d rather not start next year with expensive tests. In fact, I hope for a very boring year for my health (and Kent’s too).

Wednesday, October 30, 2019

A follow up to the heart rate stuff

I saw my medical oncologist’s physician’s assistant yesterday—first time I’d met her. Somehow the message I’d sent through the portal and was why the MO’s office set up that appointment yesterday, didn’t make it into why I was there. Frustrating.

Anyway, I recapped things with the nurse and then the PA:

Runner for decades, three things have changed in my world in the last few months. About 10 days after starting the tamoxifen, I started having heart rate spikes while running. Tamoxifen was the only thing I could stop and maybe see if that’s what caused the issue, even knowing that it’s got a half life of four to six weeks (meaning it sticks around that long after stopping the medication). Heart rate is better but still spikes but I also still have three of the very common side effects from tamoxifen.

Both the nurse and the PA asked how high my heart rate had spiked—176, 189, those were the two I shared. The PA said ok clearly that’s off because your pulse just now was 48. YES. THAT’S EXACTLY WHY I’M CONCERNED.

You can see this
morning's spike
For now I’m still not taking the tamoxifen. She said that indeed it can take four to six weeks for the drug to leave, and I’m just now at three weeks. She strongly recommended a stress test, so I’ve pinged my primary care physician for a referral.

Neither the PA or I expect any heart issues to show up; I’ve got no family history to speak of, and I’m in really good shape. But then again, I will never say never again. I also have no family history of melanoma, or breast cancer . . . and here I am.

Yesterday’s run was great: no heart rate spikes, decent times for what was intended to be an easy run and I even did negative splits. I tried running again this morning since we have snow coming later today, which will probably mean no running tomorrow. Within 10 seconds, my heart rate was up to 160. So things are slowly getting better but not fully resolved.

Saturday, October 12, 2019

And I'm done

I did not expect side effects from the tamoxifen to kick in at such a low dose. But as I mentioned earlier, I've been having heart rate issues on my runs. Today's run if it can be called that was the worst so far.

I'm training for the next 10K race on November 9 and today's run should have been an easy 7 miles, keeping my pulse nice and low. Everything else felt great: lungs, legs, even the left pec was behaving. Unfortunately even before I finished one mile at a super slow pace, my heart rate spiked to 176.

I've been running with a Garmin for a couple of years, and a FitBit for three years before that so I know how my heart behaves and this? Is not it.

So I'm done with the tamoxifen. I'll take my chances on recurrence without the drug and focus on that 40% risk reduction offered by exercise and weight.


Tuesday, October 8, 2019

About those side effects

I’m on week four of tamoxifen (with another four years, 48 weeks in front of me if taken as planned). I’m taking just a quarter dose of what’s normally prescribed, and that’s on purpose. I haven’t had good experiences with drugs that interfere with hormones and hoped that a slow ramp up to the full 20 mg would mitigate any side effects.

Unfortunately that’s not what’s going on. This whole thing is further complicated by me starting Prolia 10 days before starting tamoxifen so teasing apart what’s causing what is a little difficult. Both drugs can cause muscle pain, joint pain and bone pain, all of which I have. But those didn’t start until about day 10 of the tamoxifen which is also when I noticed my heart rate getting too high while running (another tamoxifen side effect although apparently not very common) and also started having serious hot flashes.

I didn’t have hot flashes in menopause, I had more what I’d call warm flashes. But these are much more intense—sweat rolls down my face, I’ve soaked my clothes. They’re pretty intense.

But it’s the heart rate issue that concerns me the most because it’s affecting my runs. It’s not safe for me to run at my maximum heart rate for very long (it’s not good for anyone, not just me) and it’s been spiking that high a lot. Sunday’s “run” was mostly walking because my heart rate wouldn’t stay down.

I run because I love it, sure. But running also plays an important role in reducing my risk of this breast cancer recurring.  According to this study (summarized in this article), physical activity can reduce the risk of death from breast cancer by about 40%.

But what’s my risk?

I used this online calculator to run my results two different ways. The pathology report from my biopsy said that lymphovascular invasion was present, and the path report from my lumpectomy said it was absent.

Including the LVI, I have an 18% risk of recurrence in the next 15 years. When I reran the test using no LVI present, my risk is 11%.

Here are two more results using a different calculator, one with me taking tamoxifen and one without.

Taking tamoxifen


No tamoxifen

Let’s go with the worst-case scenario. If I have an 18% risk of death specific to breast cancer in the next 15 years, and I continue working out the way I normally do then my risk drops to 10.2%. Sure I could cut that 18% risk by 1/3 by taking tamoxifen but at this rate, I would lose the benefit from exercise.

As I told Kent, I don’t have a death wish, I have a life fully lived wish. I’ve scouted around the forums that have been so helpful to me and magnesium glycinate has helped others with the same sorts of side effects. I got some last night and started taking it. I’ll give the tamoxifen + magnesium at least a week. If things aren’t better, I’ll stop the tamoxifen and continue the magnesium by itself for a couple of weeks and then try again with the tamoxifen.

Sunday, September 22, 2019

Tomorrow is D Day

In April, when I was diagnosed with breast cancer, my medical oncologist laid out his preferred plan of treatment after I’d had surgery and radiation. Because I’d been diagnosed with osteopenia (later changed to osteoporosis by my endocrinologist), aromatase inhibitors were off the table. They weaken bones and mine are already compromised. So instead, he told me I would be taking tamoxifen, 20 mg a day for probably five years, maybe more.

I'm not at all excited about taking tamoxifen. It's got some well-known common side effects that would greatly interfere with activities I enjoy. I'm not sure how much I'm willing to tolerate there, to be honest, especially since tamoxifen reduces the risk of cancer recurring by less than 10% for me. Diet and exercise give me far more bang for the buck with a 40% reduction in risk. Still, I'm not as low risk as I would have hoped, and one of the pathology reports indicated I had some lymphovascular invasion. That isn't necessarily a sign that this cancer will return or metastasize some place else but it's something to keep in mind.

So I’ve wrestled with whether I’m up for going on this drug. And as I told my MO, I had already signed up for a 10K race—the Plaza 10K which was two weeks ago—and I didn’t want to go on anything until after that race.

He agreed to that delay, which of course I’ve scope creeped by adding in two more 10K races, which were all part of the Heartland 30K Challenge (you can read about the Challenge here and I'll write more about those races later this week). And in the meantime, I ended up going on Prolia a week ago last Friday. Again, I would have preferred to start that drug after these three races were over, but my hip hurts all the time where I broke it and I’m highly, highly motivated to save my bones from something I clearly have.

In the last 10 days, I’ve unfortunately experienced some side effects from Prolia. That’s a little discouraging to be honest. Joint pain where I’ve never had any joint pain, muscle pain too, dry mouth—nothing major but still annoying. But at least I know what the Prolia feels like on its own.

And now tomorrow I guess I’ll find out what the tamoxifen feels like. I’m doing the slowest ramp up in the world—I’m starting with 5 mg a day and I’ll see how that feels. If I’m lucky and don’t have any side effects, I’ll go to 10 mg. But slow and steady is my motto on this part of my cancer treatment.

Bought a fancy pants pill splitter just for this drug.