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Seeking letrozole experiences


I just started letrozole today and am trying to mentally prepare.

A few questions for those of you who are on it:

- How long have you been on it?

- What have been the most notable side effects?

- What has helped side effects, if anything? Did any go away over time?

- If you have tried Estring, how has your experience been?


Thanks,


Sharon

Comments

  • kathabus
    kathabus Member Posts: 45

    Hi--I have been on it for 6 months. I had some joint/muscle pain when I first started...so I started to exercise 30 minutes per day and the pain disappeared and it hasn't been back. I was waiting for my life to fall apart when I started this pill, but I have ben very lucky. No major side effects.

  • spookiesmom
    spookiesmom Member Posts: 8,148

    I’ve been on it about a year and half. Have tried all the AIs, this is by far the easiest, best for me. A few minor hot flashes, minor foot joint pain. That’s it.

  • mindig66
    mindig66 Member Posts: 41

    I'm glad you asked! I've been wanting more info as well! I am going to be starting as soon as I finish radiation March 23. I've looked at Hormone boards and there is some good feedback there too, if you've not already seen that!

    I'm thrilled to hear these positive experiences! I am praying for minimal to no SE from this! So far I've been fortunate with surgery, chemo and radiation to have little to no trouble! PTL!


  • threetree
    threetree Member Posts: 1,156

    I guess I'm the downer here, but you should probably hear this too. I've been taking it (letrozole) for 13 months now. I have joint aches and pains that are "manageable" (which means I just put up with them), lots of stiffness, minor hot flashes, headaches, and more. Some of my biggest problems with this drug seem to be side effects that aren't talked about as much and those are brain fog, cognitive/memory issues, stomach/digestive problems, and overall "blahs" that make each day not much fun. I take this because I feel pressured to and because the statistics really do seem to show a significant difference between those who do take it and those who don't. I was super ER and PR positive so I suppose I am the "perfect" candidate for these drugs, but bottom line is that I hate it, feel that my quality of life has been dramatically decreased; I have both work and daily life problems caused by all of these side effects. I also have a lot of mood swings and "emotionality". The smallest things can get me crying or wistful for the past, etc. My energy levels are really down.

    Exercise does help (I walk 30 minutes every day) and so does turmeric, SAM-E, and frankincense (boswellia) - all for joint and muscle aches. The SAM-E also helps a bit with the mood problems, but not nearly as much as it did before I started taking the letrozole. I had taken it prior to cancer for a mood uplift and arthritis help. I read the other day on here a comment by a woman who had finally finished her years long course of this and she said she had real good energy now and her joints were feeling great again. I long for that day for myself (if it ever comes) and dread the years in between!

    Many others I've read about on here have a much worse time than I do though - so much so that they have had joint replacements, had to use walkers or have just given up on it altogether and let the chips fall where they may. I haven't reached that point and might never, but I am still a "mere shell" (to be trite) of what I used to be.


  • threetree
    threetree Member Posts: 1,156

    Sharon - Bottom line is that I think you won't know until you try it for yourself. The range of what people experience is so wide and varied. I don't know that it's possible to predict any of this ahead of time. There are those who say they had no side effect or problems all the way to wound up in the hospital or something. Most are somewhere in between. (I'm a Sharon tooSmile).

  • sondraf
    sondraf Member Posts: 1,545

    Eh - I've been on letrozole since the start, so about 14 or 15 months now and what was key for me was finding a generic that I tolerated better than the others. I cycled through about four different generics before I found one that caused almost no side effects. It CAN be possible, and I have no choice in the matter to stop these, but I was lucky enough to finally settle down with a brand that works long term. In addition I also exercise daily (at least a 40 minute walk, if not cycling and weight bands) and drink a ton of water.

    I would suggest really giving it a good try though, sometimes it can take up to six months for the body to acclimate to a drug.

  • sarahsmilesatme
    sarahsmilesatme Member Posts: 53

    I’ve been taking Letrozole for one year, and my SE’s are minor as compared to others. I categorize them as annoyances more than anything. I don’t sleep well, I have random calf muscle cramps, and my hands tend to fall asleep / tingle fairly frequently. In the morning, my hands are stiff for a few moments. After making a fist a couple of times, they’re fine. My body temperature is all over the place - I’m either really cold or peeling off layers because I’m sweating! I don’t necessarily have “brain fog,” but I do find myself 2nd guessing even minor decisions. Pre-breast cancer, pre-letrozole, and pre-Pandemic, I didn’t have any of the above. Because I want this drug, and I feel I need this drug, I’m ok with the few side effects I’ve experienced. Good luck to you as well!

  • specialk
    specialk Member Posts: 9,211

    sharon - here is a copy of my post from a previous thread asking what happened when stopping aromatase inhibitors after taking them for a full course. I provided some detail about how I felt during the period I was on them. I found the more I moved the better I felt, and a generic with the least fillers and additives was best for me. I did have some issues with recurrent UTI and my MO was ok with using topical estrogen cream, but my urologist was not - his wife is a breast cancer patient as well. Turned out I had a recurrence of a stricture that had last been treated when I was in college and once that was dealt with, the problem ceased. I don't feel that aromatase inhibitors aged me prematurely - although I know that some on this site have noticed that it has for them. In addition to being Her2+ I was highly ER+ and have absolutely no regrets about taking letrozole, and for 18 months I took Arimidex, for as long as I did - I would do it again. Here is a link to a site that helps you determine what ingredients are in a brand of drug.

    https://www.accessdata.fda.gov/scripts/cder/daf/

    "sarah - I did 7.5 years on Femara, then Arimidex, then back to Femara. I stopped when I did due to a combination of a BCI test result that indicated little to no benefit from continuing (done at 5 years, but I stayed on), and a dental surgery unrelated to the meds that required eliminating anything that could affect bone. It seemed like a good time to discontinue, and I had my MO's blessing and endorsement. I had a total hyst/ooph at 45 (diagnosed with BC at 54) for uterine fibroids too numerous to count, and experienced a pretty brutal surgical menopause. When I began anti-hormonals 10 years after that surgery I still had many hot flashes a day. I did not find that taking AI drugs made that worse, and stopping did not make it better. I did develop osteopenia due to my age at the time of the ooph, and it worsened on anti-hormonals. I did have six years of Prolia injections that began six months in and had much improvement in density. I am due for a DEXA scan in January but the one I had after discontinuing Prolia showed no loss of my improved density. I had some degenerated disk issues prior to breast cancer, AIs did make that feel a bit worse, and I had other bone/joint pain as well, but I have certainly gotten older as I took these drugs so I will never know what would have happened if I had never taken them. I do still have some bone/joint pain, but it is lessened and is age-appropriate I think, lol! I never had any issues with mood swings, anger, depression, brain fog, or any other emotional changes, so I can't speak to that. I did gain weight - 10/15 lbs - with treatment, and found the only way to lose it was an elimination diet. I have been off Femara for about three years and that still holds true - no weight magically vanished, and I will gain even if I eat in moderation. Exercise does not help me lose weight, but does help me maintain weight loss. My hair did thin, but again I will never know if that was coincidental or caused by the meds. Genetic testing revealed a propensity to thinning hair, so I will never know, and my hair did not become thicker after stopping the meds. I had wicked insomnia before and during treatment, and it continues after stopping Femara, it is just part of who I am apparently. All in all, I feel pretty good, but not vastly different than I did on the meds. I am glad I stuck it out for the duration, but also glad I don't have to take them anymore too. Wishing you the best - it is a bit of a feeling of flying without a net to stop, but that got better with time."

  • lillyishere
    lillyishere Member Posts: 769

    Sharon, I have been using letrozole for 15 months. My side effects peeked after 6-7 months and now, I can say I feel better but not like before letrozole time. I am not sure if most of the side effects are from surgeries, forced menopause (or surgically menopause), or letrozole since they all happened almost at the same time. My personal opinion is that stretches, yoga, walks, sleep helps.

    I see you live in MA as I do. Here is a graph from one of MO from Dana-Farber, Harold Burstein, who published on December 2020 the article with this graph on Systemic Therapy for Estrogen Receptor-Positive, HER2-Negative Breast Cancer.


    Systemic Therapy for Estrogen Receptor–Positive, HER2-Negative Breast Cancer | NEJM


  • b00kworm
    b00kworm Member Posts: 6

    Hi, Sharon -- I have been taking letrozole for 2 years now. I felt stiff and creaky for months at the beginning. Bone and joint pain in my knees and hips was bad then, too. At the 8 month mark, I had about 4 bouts of pain (1-3 days each) that affected my mobility and required some OTC pain killers to manage. After about a year, though, that side effect pretty much disappeared. I still have mild night sweats on a regular basis and my bone mineral density is identified on my radiology report as being "significantly decreased. " I have spoken to my GP about mild anxiety and depression and am now taking an anti-depressant.

    The most depressing side effect I am experiencing now with this drug is vaginal stenosis. I am drying up and shrinking inside. Great. :( However, I will certainly remain persistent and compliant for my full 5 years as the stats show that the AIs significantly reduce the risk of recurrence. Hopefully, things will improve once I come off it.

    As others in this thread have already said, you really don't know how letrozole will affect you until you start. Best wishes for a positive experience!

  • windingshores
    windingshores Member Posts: 160

    I finished my 5 years last year. I sometimes think I actually felt better on letrozole than off.

    Make sure to exercise past 30-45 minutes. It gets a lot better after that.

    Over time there are different effects. The first months any side effects are from the change in estrogen levels (like hot flashes). Over the years, I think there is more of a subtle but perhaps cumulative effect from the estrogen deprivation itself.

    But not necessarily that bothersome. I respectfully acknowledge that some have a very tough time, but others don't have trouble at all. Go in thinking positive!


  • sharon0706
    sharon0706 Member Posts: 80

    Hi everyone. It's very helpful to hear everyone's stories. Thanks so much.

    Re achey muscles: I just bought some CBD/THC salve to try on my achy muscles tonight -- this is a big step for me. My first time in a dispensary!

    Re vaginal dryness: I just installed the Estring last night and am hoping for the best. I am also waiting for a tube of Hyalogyn to be delivered. Has anyone had any good/bad/neutral experiences with these products?

    PS. I had a long talk with an employee of a local dispensary about the potential benefits of CBD/THC vaginal suppositories. I'm not quite ready to try those yet, although I like the fact that you can cut them into smaller pieces and try a tiny dose for starters. I'm pretty sure that my oncologist doesn't have any data on those yet!
  • cbaird99
    cbaird99 Member Posts: 27

    May I ask how you went off of Prolia, did you use a "relay" drug, and was the transition managed by your onco or a endocrinologist? I am reading so many scary things about Prolia, I want to get off of it, but the high incidence of bone fractures when stopping it cold turkey is terrifying:(

  • chloecat
    chloecat Member Posts: 1

    Try Yes Vaginal Moisturizer. Really great

  • moderators
    moderators Posts: 7,666

    Thanks for sharing, chloecat!

  • specialk
    specialk Member Posts: 9,211

    cbair - is your Prolia question for me? If so, I apologize for the delayed answer, but I had surgery on 6/8 so haven't been posting until now. I did not use another bone strengthening agent, such as a bridge dosing of Reclast. I had a DEXA a year after stopping with no significant backslide, I just had a regularly scheduled one that is two years later, no discernible loss from the last, and I had no issues with fracture. I just read a study that may highlight which people have more issues with spontaneous fracture after stopping Prolia based on age/previous bisphosphanate use before Prolia/bone markers, so if your Prolia has been managed by your oncologist it might be worth speaking to an endocrinologist before discontinuing to discuss the best approach for you as an individual. It is also important to note what is meant by high incidence, which in the study I read means more than 1 in 100, fewer than 1 in 10, so somewhere between 1% and less than 10%. Of course, if you fall into that group that is unfortunate.Anecdotally, I know a number of people who have received Prolia and had no issues. I believe the bridge infusion of Reclast approach has gained traction since I stopped receiving it several years ago.

  • polkadot1
    polkadot1 Member Posts: 46

    SpecialK - Do you happen to have a link to the study regarding spontaneous fractures by age/bisphosphonate use? I am getting ready to start Prolia and would be interested in reading. It's wonderful that you have had such a positive experience. Gives me hope! :)

  • cbaird99
    cbaird99 Member Posts: 27

    Hi SpecialK, yes it was and thank you for answering! I am still researching how to best go off Prolia, I also have spinal arthritis and something called DISH so I have a higher risk for fractures due to that, so I want to do this right and it is so complicated! It does not seem the medical community is in agreement on the safest way to relay off of Prolia either. I sure wish I had never gone on it, and I fault my onco for selling it as the gold standard and not explaining what happens when you need/want to go off of it:(

  • margieh54
    margieh54 Member Posts: 1

    Hi there

    I have been taking letrozole now for 3.5 years. I got osteoporis now. Night sweats most nights, spells of weakness 3-5 times per day together with a nausea. Got atherosclerosis now. Doing strict diet (no meat, no fat) to control cholesterol. Can't wait to get off these hormones. I am taking a generic which I can tolerate (no bone pain, no depression). Just wondering - if I could stop cold turkey?

  • moderators
    moderators Posts: 7,666

    margieh54, welcome to Breastcancr.org. We're sorry you're having such a hard time with side effects, but we're glad you've found our discussion boards and decided to reach out! Until you hear from other members's experiences and advice, the main Breastcancer.org site has some articles that may be of interest to you, see below. But please, always talk to your doctor before making treatment-related decisions.

    Managing sweating

    What to expect during Femara treatment

    Hope this helps! Looking forward to hearing more from you soon!

    The Mods

  • specialk
    specialk Member Posts: 9,211

    I clicked on this thread this morning and realized I had been asked a question regarding source info for my post above. I apologize for not seeing the question in a timely manner, but wanted to include the material.

    https://journals.sagepub.com/doi/full/10.1177/20420188211010052


  • nw7688
    nw7688 Member Posts: 2

    that saying is so true. I have blossomed since I found out I had MBC. It’s strange because I am thankful and disappointed all at the same time. I just related wanted to share .