Letrozole

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Artista928
Artista928 Member Posts: 2,753
edited April 2017 in Hormonal Therapy - Before, During, and After

Well, today my labs showed I'm officially in menopause and onc wants to switch me off Tamox and on this. Scared because of joint issues so many get. Already have it. Anyone here on this and care to share experience? I have 2 weeks of Tamox left in my bottle so I'm going to finish it before taking the plunge. Ugh.

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  • Kicks
    Kicks Member Posts: 4,131
    edited February 2017

    I've been on Femara/letrozole for 7 yr. When I started Femara, it was not available in the generic form - letrozole - so it was Femara until it became available in generic form - letrozole - and have been on it since it became available. Since then, it's been letrozole (different brands at different times).

    I was 63 when DXd and started Femara. I had gone through natural menopause at 44, so was 19 yrs post menopause when I started Femara. Except for a few weeks when my PA wanted me to try HRT because of a huge family HX of osteoporosis, I didn't 'do' it. I didn't like HRT SEs, so quickly stopped it.

    Do I have 'aches and pains' - 'ya betcha I do'. They have gotten worse over the yrs on Femara/letrozole BUT were there before (thanks to being a very active horsewoman all my life and active in a lot of different outdoor activities) and would have progressed anyway. So now at 70 - the more active I keep myself, the less 'aches and pains' I feel. Of course, 'they' would have progressed over the yrs anyway, even without Femara/letrozole.

    A lot comment on 'hot flashes' on Femara/letrozole. I didn't/haven't had any - but then I never had any when I went through menopause.

    Others will have different experiences to pass on to you. My experiences are mine - others are theirs. We are each so unique that there is no way to 'predict' what any of us will individually experience because someone else did. Get all the input/insight you can get, but always remember that you are the unique woman you are - just as each of us are.

    Winyan - The Power Within

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  • mustlovepoodles
    mustlovepoodles Member Posts: 2,825
    edited February 2017

    I started letrozole last year at age 59. I have noticed stiffness and pain in my hands and knees. However, I have had psoriatic arthritis in my hands and feet, and osteoarthritis in my knees for many years ,so it's hard to say how much of the stiffness and pain is the original arthritic pain and how much is the letrozole. I have had no hot flashes and I have no more trouble sleeping than usual (I have chronic insomnia, so I take medication to make me sleep.)

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  • CidneyI
    CidneyI Member Posts: 79
    edited February 2017

    I stopped taking Letrozole this past Christmas because of the side effects. My feet, hands and knees hurt so bad to the point if being miserable. Hot flashes - you betcha. What really made me stopped taking Letrozole was how it made me feel mentally. I have never experienced depression but I now know what it feels like to be depressed. I wasn't sad, I didn't have self pity, I just no longer cared about anything anymore. I had no feelings about anything, I no longer wanted to do the things I loved or be around loved ones or people. I didn't care if I lived or died. I was content with just sitting someplace and starring off at nothing. I have been off of that damn pill for about a month and a half now and I am just now starting to feel slightly better. I go see my onco at the end of this month and I know he is not going to be happy with me but I can not live my life like that. I would rather tolerate the physical issues any day over how it makes me feel mentally.

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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited February 2017

    My experience with Letrozole thus far (13 months) has been the same as Kicks' (except for the horsewoman part—I am a congenital klutz and dedicated non-athlete). I have “startup" joint aches (immediately after getting out of bed or up after a long session of sitting, I hobble…but 20-30 steps later I'm fine), and that's about it. In fact, I hurt much worse from knee OA, years pre-cancer, before I had my knees replaced. I got a trigger thumb (R) that eventually disappeared, but had a L one a decade ago (again, long before cancer). The closest I get to a hot flash is either sleeping with the ceiling fan on (low speed) or suddenly feeling comfortable in a very cold room. Never had them during menopause (11 yrs ago). I do have a slower metabolism and have gained about 10 lbs. since starting Letrozole…or maybe it's the carb cravings I'm finding harder to resist (the “YOLO" mantra has been playing on an endless loop in my brain). And my hair was thin-ish before cancer too. My cholesterol (mostly LDL) has increased, but my total cholesterol-to-HDL is still in the “ok” range. And both my parents had sky-high cholesterol (like me, my mom’s HDL was in freak-of-nature territory and she might still be with us instead of dying at 85 had she not smoked) until they took statins.

    Maybe what's helping with my joints is that I take both my letrozole and a couple of 8-hr acetaminophen at bedtime and a Celebrex in the morning. And my Fitbit keeps guilt-tripping me into walking more.

    I'd say that being very strongly PR+ might explain the mildness of my symptoms, but Kicks was PR-. Go figure. Everyone is unique.

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  • Artista928
    Artista928 Member Posts: 2,753
    edited February 2017

    Thanks--

    Chi- What was your PR? Mine is 50.

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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited February 2017

    My PR was 97%. ER was 75% (the reverse of most ER/PR+ patients).

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  • Artista928
    Artista928 Member Posts: 2,753
    edited February 2017

    My ER was 95. Ki67 was 75.

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  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited February 2017

    My path report & ODX results didn’t mention my Ki67. My MO says it’s not as predictive as ER & PR %ages, grade, node status and ODX score—especially in Stage IA patients.

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  • Artista928
    Artista928 Member Posts: 2,753
    edited February 2017

    They didn't do an oncotype on me. I was basically told if you don't do chemo, very large chance I'd be stage IV at some point. That was enough to scare me as I was hoping to avoid that and just do rads after my mxs.

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  • KBeee
    KBeee Member Posts: 5,109
    edited February 2017

    They only do oncotype if they are on the fence about chemo. They do not do it for stage III because they know the benefits outweigh the risks. I had tamoxifen and now am on Letrozole. I think for me, the Letrozole is easier. I do get frustrated having to take it since 10 years will be the minimum for me, but I know that my triple negative friends would do anything to have a pill to take that would decrease their recurrence risk, so I try hard to be grateful for it.

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  • Wendy3
    Wendy3 Member Posts: 1,012
    edited March 2017

    Hello Ladies,

    I'm new to the letrozole it's been about a month now. I'm finding it very difficult hot flashes, night sweats , nausea, I think I have all the SE and I'm very tired. So my question for you ladies is does this normalize or is this drug not for me? I am 53 and two years gone from menopause. Thanks

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  • wintersocks
    wintersocks Member Posts: 922
    edited March 2017

    I am due to stop Letrozole in a few weeks as my 5 years on it will be up. I have had my share of hot flushes which I believe have been controlled by Venlafaxine (Effexor in US ). I continue to have night sweats and manage them as best I can cotton nightwear etc, I did not have nausea that was caused by this drug I believe but nausea for other reasons.

    After 5 years I would say my biggest problem on this drug is hair thinning which I hope might be reversed once I am on Tamoxifen.

    I would leave it to settle then review in a month or so - my advice.

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  • Luckynumber47
    Luckynumber47 Member Posts: 397
    edited March 2017

    Wendy, do you know which lab mfgs your letrozole? Some people have side effects from different fillers and those vary from lab to lab. Mine come from Teva and so far, (knock on wood) the side effects have been minor.

    Also, many have said that after a few month the side effects go away. Hopefully that'll happen for you

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  • groucho2
    groucho2 Member Posts: 51
    edited March 2017

    I am on Letrozole for the second time, because this is my second time around with BC.

    I had no noticeable side effects ether time. My first time around, I took Femara. There was no generic available. This time around, I am taking the generic. Like I said, I don't notice any side effects.

    Now, Tomoxifen, speaking just for myself, was a nightmare......


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  • trudy-erl
    trudy-erl Member Posts: 38
    edited March 2017

    Hi Ladies:

    I had Inflammatory Breast cancer and after chemo, mastectomy and radiation was put on Letrozole. I've had horrific side effects like, zero energy, insomnia, joint pain, depression, cataracts, night flashes and on and on. The worst one being the lack of energy, and generally not feeling well. I was 59 when started taking it and was told if I was very fortunate I would be cancer free for 2 years and possibly could be looking at 5 years. 5 Years came and went, I was ecstatic eventhough I was feeling rotten. In October it will be 10 years. BTW, I have extremely thin hair but know that many never get any hair back who received the chemo I did. I also had/have to take Atorvastatin as my cholesterol went very high. I went from 10 mg. to 40 mg. daily. As I had a history of blood clots I had to start Warfarin before my chemo and am still on it. My dilema is what to do? My oncologist suggested (after 5 years) to stay on it as I surely would have not been in remission that length of time without the Letrozole, my GP who is the best fully agreed and I did as well....... to stay on the Letrozole. It seems like every year I'm losing more energy and now seem to go out only when I need to. It is very difficult, but much better than getting terminal cancer. I would truly appreciate any comments and/or opinions from you Ladies. I can hardly remember how energetic and happy I was before diagnosed with IBC, and know it is the past and needs to stay there. Thank you for any thoughts you have on this. :( I do not have all the history as you Ladies do, as Canada has a very different Health Care System. I'm stage 3/ which is one ahead of terminal. If it re-occurs it definitely would be terminal. Generally speaking, IBC does not back in the other breast but rather in an organ, mostly the brain.

    I know I had 3 lymph nodes involved and I got Chemo first before the mastectomy (instead the usual reversal) and this was followed by 26 radiation treatments.

    With great appreciation, THANK YOU!

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  • gardengypsy
    gardengypsy Member Posts: 769
    edited March 2017

    Groucho~ You give me hope. I have been afraid to start the Letrozole..
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  • Wendy3
    Wendy3 Member Posts: 1,012
    edited March 2017

    so

    So today started having major abdominal pain this can't be part of the SE can it? I'm terribly worried that it's not working and instead it's progression

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  • Artista928
    Artista928 Member Posts: 2,753
    edited March 2017

    After 5 wks on letro, I pulled the plug on it. Saw my onc today and with all the nasty se's I'm having from head to toe, it's not worth my being so sidelined from it. My arthritic knees pre-cancer got worse and other jts I never thought about chimed in too. Giving my body the weekend off and I'm back on Tamox where the se's were more handable than this. It was a hard decision even though I've relieved to not be as miserable going back on Tamox but mine got down to not just quality of life, but almost life itself and not just in the form of depression..

    Wendy- try not to worry. See your pcp or onc and get your liver values tested. My pcp handles non-hormonal lab work and CBC,CMP. The rest is on my pcp. My liver values are still high and I do have off and on abdominal cramps so I'm getting an abdominal ultrasound done. She wants to be sure it's just fatty liver for me as I have that and not anything else. You have to talk to your docs about symptoms and if they don't offer tests, ask for it. My pcp is so pro everything that if she can't explain why something is off with me, I get tested. Good luck.

    Good luck to all who keep to the AIs whatever one you take. I've never had much se's before ever in my life, not even with chemo- it wasn't terrible for me. This however was like an avalanche.


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  • Joanne_53
    Joanne_53 Member Posts: 1,477
    edited April 2017

    Hi everyone ... I will be new to the group June 4 when I start Letrozol. I have 5 years on Tamoxifen and will take the month of May off as a drug free vacation. Looking forward tosupport if needed. I have read your posts and I can only home it is a cakewalk like a few of you and not the opposite. Thanks to everyone for being here ...

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