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Jun 9, 2019 11:51PM
I really had a bug up my nose about tamoxifen. All sorts of reading prior to taking it showed that it has a pretty good track record of keeping cancer away. Then I came to BCORG and saw women who were taking tamoxifen daily and got a recurrence anyway. Hmmm. What is one to think of these very opposite outcomes?
If you take the tamoxifen and get cancer again anyway, how pissed off are you going to be?
If you DON'T take tamoxifen and get cancer again, how pissed off are you going to be?
These two questions, for me, made only one thing clear. THERE ARE NO GUARANTEES. There are statistics, best guesses. But nothing, NOTHING with this disease is carved in stone. So. How big of a gambler are you? Because that bottle of pills, they are chances. Rolls of the dice. You can take the pills, weather the side effects and do what you can to stack the odds in your favour - accepting that you might lose anyway. OR... you do NOT take the pills and accept that whatever happens, happens. Of course, even if you DO take the pills, whatever is going to happen, will happen.
I looked for research that said, "Every woman MUSt take 20mg every day otherwise she will NOT see any benefit from this drug. 20mg is the LEAST amount that will do any good." But despite everything I read never, ever,did I find the information saying that the lowest effective dose was ever determined. It wasn't. No research was done into HOW MUCH was NEEDED daily to prevent recurrence. They did find that at 60 and 40 mgs a day, women said screw this and quit taking the drug. The number of women refusing treatment because they felt so awful was very high - so they dropped the dose until women stayed on it - grudgingly - with hot flashes, aching bones, thinning hair and dusty vaginas....but they stayed on in larger numbers than before. So they settled at 20mg as the dose where the fewest women quit in utter misery. But that IS NOT the same as the lowest, effective dose.
There are some small studies saying that lower doses are just as effective. But these are small and inconclusive.
I don't enjoy feeling miserable, aching, sweating, going bald, having killer leg cramps, dribbling pee and a vagina that is as dusty as the Sahara in a windstorm. But I also did not enjoy the idea of doing nothing and hoping this cancer didn't come back. It was a tough battle. In the end I decided to split it down the middle. Like the small studies said, I started with 20mg, to get a good, high amount of the drug in my system, and now I take 10mg a day. I cut the pills in half. On Sunday and Wednesday, I take a full 20 mg dose. To keep the tamoxifen levels up there. My oncologist did not tell me I could do this. I told him I was doing this. I did not seek his permission.
I know full well my cancer might come back and someone will say it's because I didn't take the full dose. But no one can say that with any authority at all. We do NOT know the dose that works - therefore saying cancer comes back because you didn't take the fulldose is just plain BS. We also know we can take the full dose and get cancer again anyway! So.........
Even on mostly half a dose I have had the full range of side effects. They ease off then ramp up again. IT's always something new! But the aching joints did go away about a year in. I also switched to taking my pill at night and have not had leg cramps since - which is weird, you'd think taking it at night would make the cramps worse, but no. Not for me anyway.
CassieCanada, you can take these pills on your own terms. Take a full pill every other day. Or take 3 full pills then cut back to half pills. Or mix it up in any combination that you wish. Your oncologist will NOT give you his blessing so don't expect it. But if he is honest he will agree that the lowest, effective dose has never been established. Therefore .... there is no WRONG way to do this. Don't feel STUCK. If you start at 20 and want to cut back, do it. If you start at 10 and want to increase, do it. You are in the driver's seat with this. Sometimes knowing that you get to tweak and juggle the dose as you see fit can make it a bit easier to cope with. As my onc said, some tamoxifen is better than no tamoxifen. Good luck with your decision, whatever it may be.
3/23/2017, IDC, Left, 2cm, Stage IIB, Grade 2, 0/1 nodes, ER+/PR+, HER2-
4/11/2017 Lumpectomy: Left; Lymph node removal: Sentinel
7/4/2017 Whole-breast: Breast
Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)