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

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ThreeTree
ThreeTree Member Posts: 709

Has anybody else experienced a sudden increase in side effects from letrozole? Over the last week, I have experienced a real significant increase in body and joint aches, mood swings, weepiness, depression, anxiety. I went out for a walk this morning (I usually walk every day) and since then, I can barely walk or stand for more than a few minutes at a time, and that's not my usual experience. The neuropathy (from Taxol presumably) is also worse and just a few minutes ago I dropped an almost full jar of instant coffee on the floor (I've "regressed" to instant due to the fatigue, etc. of the cancer treatments), and it was really hard to clean up the mess; coffee grounds, small glass shards, etc. It set me back and the aches and pains increased along with the inability to stand or walk for very long. My limbs feel weak and a bit tingly too. I get more hot flashes and "freaky feelings" too. I check my vitals at home, and they are all fine.

At first I thought I was just having an anxiety reaction to having to have my apartment complex's lenders and insurance adjusters come in and take pictures of my apartment (not just mine, all the apts), because it is a cluttered mess, and I was embarrassed. That situation was over Thursday evening and I am still a mess and it seems like things are even getting worse, so I don't think it was just that stress and anxiety about having to have people in my apartment.

I've told doctors before that sometimes I think the side effects get worse and they deny it, dismiss me, and say that the worst is at the beginning and that they get better from there. One did tell me I could switch to Tamoxifen, but I don't want to do that. I've been taking this for a good 18 months now, and there is no way the side effects are getting better, but it was at least relatively tolerable until this past week. Switching sounds like a big hassle in it's own right and from what I've read here, the odds are overwhelming that you will just get more of the same (maybe just "different").

Has anybody else had this happen and if so what did you do? Does anyone just have any general thoughts they'd like to share about this? It's reached a rather scary point this afternoon.

Thanks for reading.

Comments

  • Anonymous
    Anonymous Member Posts: 1,376
    edited August 2021

    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!

  • ThreeTree
    ThreeTree Member Posts: 709
    edited August 2021

    Hi Sondra - Thanks so much. I will look into the brand issue. I'm sure mine has the dye in it, as it has a yellow/orange color. What they give me is the generic called Breckenridge, and they have from the beginning, so I don't think it's a switch issue, but that doesn't mean it still isn't from fillers, etc. I totally agree with you about having no idea why they put these dyes and more in these pills. There's simply no need for it that I'm aware of.

  • kksmom3
    kksmom3 Member Posts: 183
    edited August 2021

    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.

  • ThreeTree
    ThreeTree Member Posts: 709
    edited August 2021

    kksmom3 - I'm so sorry about all the problems that you too, are having with these drugs and I feel for you! My situation has calmed down slightly since I wrote my original post here, but I continue to have big time problems. I also think some of my muscle soreness right now is due to costochondritis and perhaps overuse of a "backpod" - a gadget designed to help with the costochondritis. I'm thinking the Letrozole makes the costochondritis worse, because of the negative effect it has on muscles and joints.

    I love your "ugly little yellow pill" description! I call it my "poison pill".

    I'm curious about why your doctor would say that after 3 years, you might have had "enough" of the AI, given your diagnosis. How do they know how long any of this is good for? I've read on here where some say that even if you can manage 2 years you will have at least some "protection" for many years to come. I don't know what they mean by "protection" nor how they can say that 2 or 3 years are good in any particular way, compared to 5, 7, or 10. As far as I can tell, these AI's suppress our estrogen during the time we take them, but that when we stop, our estrogen production returns to normal and essentially, we are back at square one. It seems that all we really do with these is buy ourselves some time during the years we take the AI's. I don't know where this idea of "enough" and "protection for the future" comes in.

    Well I really hope the Anastrozole works better for you and that you find a solution to these awful problems the AI's cause. Are you far enough into your break to know if you feel better now, not taking the Letrozole?

  • Beesie
    Beesie Member Posts: 12,240
    edited August 2021

    "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
    ThreeTree Member Posts: 709
    edited August 2021

    Beesie - Thanks very much for all of this, it is very helpful. The "carry-over effect" is an interesting concept, but I still wonder why it happens. It still seems as if we buy ourselves time by taking the AI's, whether the effect carries over or not, i.e. presumably our estrogen production returns to normal when we stop them. Looks like maybe we get a little bit of a leg up on the future though after stopping them. I can only imagine that it is because the AI prevented some earlier progression that might have happened had we not taken them. I can't see where the AI itself would continue doing anything for us after stopping. It must just be that the AI suppressed enough progression during the time we've taken them, that it's harder for tumors to get started growing again, even with a return to normal estrogen production. (I hope I'm making a little sense here - I'm just kind of randomly thinking and writing along as I consider what you presented.) I'm going to look at all of this more in depth later and I'll probably get a better understanding. This letrozole really messes with my brain too, and ever since I started taking it, I've noticed that I have a real hard time with "in depth" articles (about anything), holding concepts in my head while I take in more info, etc. I've read that it's "executive function" and "working memory" that letrozole affects so much in our brains, and I really struggle with information that I would have never had problems with before. I just hate it! (But I guess I'm alive and "not progressing" for now).

  • kksmom3
    kksmom3 Member Posts: 183
    edited August 2021

    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.

  • ThreeTree
    ThreeTree Member Posts: 709
    edited August 2021

    kksmom3 - Thanks for the info about what your doctor said. It sounds like she's referring to the "carry-over effect" that Beesie pointed out (and yes I agree that Beesie is very helpful on these boards!). I can see where in a case like yours, where your diagnosis isn't particularly severe, it might work to take the AI for less time. It's just so hard to sort it all out - so many factors to consider. I'm glad that you are seeing some improvement in your arm pain, but there's no way to tell if it's from the letrozole break or if it would have just happened. My side effects fluctuate so much, it's hard to know what's what. I can also relate to your dreading the start of the anastrozole. So far, I'm sticking with the devil I know, because switching seems to come with so many of it's own problems, and doesn't necessarily help. Good luck with it! I know for some it seems to really be the answer. Maybe you will be one of them.

    Re taking a break, I have recently read about some research that is looking at things like 6 months on and then 6 months off. Some studies seem to only be looking at 3 or 4 month breaks at a time, but it is an interesting idea. Supposedly the breaks give the person some better quality of life, but aren't long enough to allow for progression. At the same time, the break apparently might slow down the cancer cell's ability to become resistant to the AI. The only stuff out there on this right now is scant, so nothing conclusive, but it would be nice if they could pursue that line of research. Even something like a few months on and off at a time might help some keep at it and not just quit. Also, I understand that the idea of these type of breaks would allow people to continue to take it for a longer period of time, because the risk of resistance and other cumulative adverse effects would be much less.

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