Letrozole Sudden Inc in SE's - Aches/ Pains, Weepy, Anxiety

Did you have a brand change at all to your generic recently? I've found that any generic with Yellow Number 5 as a colorant additive (aka tartrazine) and I get these side effects, usually within a few days of starting the pack. They were so bad last month that I finally went to the pharmacist and filled in a new script and stood there until they pulled the brand with no colorant additive. Within a day I was back to normal with no need to take painkillers daily to manage the aches and pains, moodiness resolved, no more snapping at my partner, and the anxiety had also resolve.

This has happened more than a few times when they switch the generic on me and I know exactly which generic brands have the additive (seems like all of them!) Even before cancer I knew I couldn't eat/drink foods with this colorant because it would make my mind feel weird - can't believe its used in medications!

I've been on letrozole for 2.6 years. The first year was great, no side effects. Then, I started getting foot pain, it's tolerable, now my right elbow joint and muscles hurt like I did something to it, but I didn't. The worst SE for me is vaginal dryness, I got really sore. It was awful. My MO told me I had to ask my PCP for a prescription for topical estrogen, which I did. That was in July, 6 weeks or so ago, and it is finally getting better, but I still hurt, just not as terribly bad. These SE's are cumulative. I am taking a months break and then she wants me to try Anastrozole. She wants me to get to 3 years, then she says, for me, with a 3mm tumor, that 3 years is good enough. I guess I'll try, but I'm not even wanting to at this point. It sucks to feel crappy every minute of every day and it's depressing. I feel better mentally off this drug, but then of course, I worry about not doing the full 5 years. Mine is the Breckenridge brand as well. Ugly little yellow pill.

Ugh.

"Carryover effect is the term used to describe long-lasting benefit of endocrine therapies after stopping the initial treatment. This term was first used to describe the persistent benefit of adjuvant tamoxifen beyond 5 years after completion of treatment. In the adjuvant setting, the Early Breast Cancer Trialists' Collaborative Group (EBCTCG) showed that 5 years of adjuvant tamoxifen resulted in a 41% reduction in the risk of breast cancer recurrence and 34% reduction in breast cancer mortality at 15 years compared with placebo. The risk reduction benefit appeared to be constant over the 15-year period, with absolute differences of 11·4% at 5 years, 13·6% at 10 years, and 11·8% at 15 years when comparing tamoxifen with control. For adjuvant aromatase inhibitors, the EBCTCG reported an additional 20% reduction in risk of recurrence and 15% reduction in risk of death from breast cancer at 10 years when 5 years of aromatase inhibitors were compared with 5 years of tamoxifen. Similarly, absolute benefit remains constant over the 10-year period, with 3·1% reduction in the risk of recurrence at 5 years and 3·6% at 10 years."

Source: Carryover effects of aromatase inhibitors in prevention https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(19)33102-2/fulltext

"We can infer from the present results the proportional reductions that would be achieved with 5 years of aromatase inhibitor compared with no adjuvant endocrine therapy. Treatment with tamoxifen for 5 years reduces recurrence by about half during years 0–4 and one-third during years 5–9, and reduces the breast cancer mortality rate by about 30% throughout the first decade and beyond. Therefore, 5 years of an aromatase inhibitor compared with no endocrine therapy would reduce breast cancer recurrence by about two-thirds during treatment and by about one-third during years 5–9, and would reduce the breast cancer mortality rate by around 40% throughout the first decade, and perhaps beyond."

Source: Aromatase inhibitors versus tamoxifen in early breast cancer: patient-level meta-analysis of the randomised trials https://www.sciencedirect.com/science/article/pii/S0140673615610741

NOTE: These figures refer to total recurrences, which includes both local and distant recurrences. The percent risk reduction for both Tamoxifen and the AIs is somewhat higher for local recurrences than for distant recurrences. The carryover effect (i.e. some risk reduction benefit in the years after a patients stops taking Tamox or an AI) does however appear to apply to both local and distant recurrences.

Re Letrozole ingredients: https://dailymed.nlm.nih.gov/dailymed/search.cfm?labeltype=all&query=letrozole

Click on any brand of Letrozole and scroll down the list to find "Ingredients and Appearance". Click on that and you will get a complete list of additives. You can compare your generic brand to other generics and also to name brand Femara (which is way down the list on the second page).

Re Letrozole side effects: This is the most complete list I've found. https://www.drugs.com/sfx/letrozole-side-effects.html

ThreeTree, she told me they really don't know if 3 years is as good as 5, but it does confer a continued benefit, and my tumor was pretty small. Therefore, those things considered, she is ok with me getting to 3 years. Beesie put it a lot better than I ever could, and I appreciate her continued wisdom and knowledge on these boards.

3 years would be better than nothing. I am only a week into my break, my weird arm pain has lessened slightly, and the vaginal soreness is better, but that's because I am treating it with estradiol cream 2x a week, and vaginal moisturizers every other time. It's better but not gone. I am hoping it continues to improve. I will try the anastrozole but I dread it. I do however, want to get to 3 years and if I could do all 5, even better. However, I don't think it's going to make much difference, they all wipe out our estrogen.