Seeking letrozole experiences

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.

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.

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.

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."

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!

Try Yes Vaginal Moisturizer. Really great

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.

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:(

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 .