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Doing Well on Aromatase Inhibitors (AIs)

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Comments

  • threetree
    threetree Member Posts: 1,157
    edited November 2021

    KID1919 - Yes it is weird about these reactions. I have itchy tear ducts also, and my eyes can get dry and a bit irritated at times. Like you too, I've got all the joint and muscle aches and pains, tiredness, etc. I also have a permanent case of the blahs. My 2 years will be in January of 22 also. Not quite sure why this is all on the "Doing Well on AI's" thread. With all of these side effects I don't consider myself to be "doing well". I'm putting up with a lot; plowing through in spite of a lot, and basically just "waiting it out". Originally I thought I'd be halfway through this Letrozole ordeal by next June, but now they talk about 7-10 years. I just don't know if I can do it that long!

  • [Deleted User]
    [Deleted User] Posts: 0
    edited November 2021

    ThreeTree: LOL. The medicine sure doesn't make us feel "Well" ! There probably is a forum on here with the heading " do you feel like crap on Al's?" I try not to think too far ahead...another 5-7 years on some kind of Al. Or maybe more. UGH! You are right tho just keep putting one foot in front of the other.

  • laughinggull
    laughinggull Member Posts: 509
    edited November 2021

    KIDI919, yes I noticed the no smell. I thought it was normal, bc of the lack of female hormones -same as one doesn't smell pre-puberty. I don't mind.

    To compensate, my teen daughter stinks, so it all evens out in the end!

    Happy

  • [Deleted User]
    [Deleted User] Posts: 0
    edited November 2021

    LaughingGull: I never thought of that! I think it may have started the summer (say July/August) prior to my dx in Sept but I won't swear to it.


  • cm2020
    cm2020 Member Posts: 530
    edited November 2021

    ThreeTree....It is interesting you mention a permanent case of the "blahs". I really thought that was just me and didn't fully associate it with Letrozole. Have you found anything that helps with them? The list of side effects that I (we all) deal with is long, complicated, and not fun. The last time I was supposed to see my MO, she wasn't in the office so I saw her NP. The NP said to me that she knows we all suffer on these AIs and she really feels bad that we have to suffer so much to keep cancer away. At the time I still had a UTI (after a month) that hadn't cleared up and so I already felt like hell, when she said that to me and was so kind I just started crying. No, it didn't make my side effects or UTI better, but the compassion sure meant a lot to me. I hope it does you guys as well. Just acknowledging that we suffer is important, I think. Also, she (and all my drs) have sure shown me more compassion that my estranged husband who ignores me constantly and told me he was "to busy to be concerned about you". Too bad we can't support 2 households and I need health insurance otherwise maybe my "blahs" wouldn't be quite as bad as they are. But I digress......

  • threetree
    threetree Member Posts: 1,157
    edited November 2021

    cm2020 - You know I'm very sorry to say that I haven't really found anything that truly helps that constant state of blah. This letrozole has taken away my joie de vivre, my "mojo", my "get-up-and-go", and my just plain old motivation to do do things and participate in life/work in general. I do take Sam-e that boosts my mood a bit and helps with joint aches. I also use a "happy light" year 'round; just for longer periods of time depending on the season, and that too helps with some of the blah and fatigue, but these things only make a dent in the problem. I'll take that dent though any day, as when I skip either of these two things for any reason, I notice an immediate plunge back into total "zombie and brain fog land". I just can't wait for the day when I can stop this pill! Of course the blahs will then be replaced with increased fears of recurrence. This is a no win game. Almost forgot daily walks that can help, but again on a minimal level. I do take pleasure and get some true joy noticing all the flora and fauna and the changing seasons during my walks. I also derive some pleasure just from seeing kids walking home from school with their parents, the dog and baby walkers, etc.; just "scenes from ordinary life" if you will. Those happy and engaged moments only last "in the moment" however, and don't seem to carry over much for the rest of the day.

    Very nice story you told about your apparently caring NP. I know that sometimes when we sense that someone else really does "get it" and empathize it can just cut to the core and bring on those tears. I just don't experience that from others all that much however. Nice to hear that most of your medical people are so understanding and caring. I find a mixed bag with my group. There are those who do truly seem to care and then there are those who appear to "feign" caring when it really is just part of a routine job and day for them to listen to your fears and concerns. With some I think caring comes naturally and for others they really do have to struggle trying to truly "let it in" when others share there emotional sides. At the same time I'm sure it is really hard for medical professionals who deal with this all day every day to genuinely care about what all the patients are going through in their lives. I suppose you have to keep some emotional distance just to be able to do your job, get through the day, and continue on in one piece to get home then to your own family. While I'm sure there is another side to it, I just don't always feel as "understood" and "cared about" as I think should maybe be the case.

    Re the husband issue: I have a former husband who I am still in touch with off and on even after almost 17 years now. I didn't tell him about all of this when it all came down 3 years ago, but not long ago I did mention it to him. I got a "I'm sorry about your cancer and I hope it gets better" comment and that was all (more than you got though, I have to say), but that will be all I ever hear and get, and he may well have just felt that he "had to say something". He and I go years without any contact and then out of the blue every once in awhile one of us will email the other about something. I'm just so sorry that you have to continue to live in the same house. Financial problems are indeed the worst part of these marital problems and splits. It's a very weird feeling to still be connected to someone in some way (even emotionally) when you know they really aren't there for you and maybe never were.

  • kaylie57410
    kaylie57410 Member Posts: 117
    edited November 2021

    Hi ThreeTree-I am Kaylie from Vermont- have read your posts and get a sense you are struggling -what you describe does sound like you are understandably depressed. I have been there unrelated to Breast cancer but generally related to a relationship ending-so as I healed from that my situational depression eased- what really helped me also was hooking up with a female counselor who I could openly share my feelings with who was able to help guide me thru the morass without judgement--one of best decisons I ever made for myself--will be forever grateful to her--do you think going that route might help you also--certainly wouldnt make things worse----sending understanding hug from the north country,Kaylie

  • threetree
    threetree Member Posts: 1,157
    edited November 2021

    Hi Kaylie in Vermont - Thanks for the thoughts and information. I don't know if you are taking an AI or not, but for me it's not always about depression, although I definitely have times of depression. For me my moods are all over the map with this drug and I can get very elated and joyful at times too, and everything in between. It can change on a dime. Re talk therapy, I did see people at times during my marriage many years ago. I also saw people with my husband and for marriage counseling type talk way back then. At that time, I really got the feeling that they were more focused on him and that they were looking to the person who had the insurance plan (him). They would look at me and ask me if I didn't think he was depressed and then launch into ways I might be able to understand and help him more, etc. It left me thinking, "And what about me?". Even if you understand and want to help someone else through their depression, you might need some support too, and I just really didn't find it.

    All that aside, I also wonder just how much a talking therapist can help when it is this drug causing the problems and as long as I take the drug, I will have this problem. A counselor can't take away the effects of the drug, the aches and pains, the brain fog, the mood swings, etc. They also can't cure cancer and take away the worry about it. I also don't think that things like "re-framing" the problem are all that beneficial, when the reality is that it "is what it is". This drug negatively affects my brain, along with the rest of my body, and will until the day I don't have to take it. I do think about "seeing someone" as they say, from time to time, but based on past experience and what I know of my current situation, I just don't know that it would help very much. Until they find a cure and /or drugs that aren't so toxic, I think all of us facing this disease are going to struggle physically and mentally.

    I don't know your situation, but I'm really glad for you that you found some help by talking things over with someone. I know that it really can help people and I've known people that swear by talk therapy, but so far, I'm just not sold for myself.

    Sending thanks, appreciation, and good wishes from the other "north country", Washington.

  • kaylie57410
    kaylie57410 Member Posts: 117
    edited November 2021

    morning- nice to read your response--just something for you to consider as no matter the factors affecting the emotions,sometimes just having someone to sort thru it all can be helpful--you know best about yourself of course

    I am almost 4.5 years out from dx- stage 2 .2/2 nodes,high oncotype score so I am one of the "lucky" ones who gets to stay on letrozole for 7 years--recent study results show that 10 years isnt much better than 7 and the risks of osteoporosis increase over time. I take my pill with coffee every am and think of it as my "best friend" as is my best chance of avoiding recurrence. only have 2 noticable side effects--insomnia which have kinda adapted to--doesnt help I suppose that my 3 dogs sleep on the bed with me--lol--and morning knee stiffness which eases as I move around--in the plus/ minus column- figure is a small price to pay for doing all I can to ward off a recurrence.I feel like life is 98 percent back to normal after that first difficult year or so..I still occasionally lie awake in the night dreading the possibility of a recurrence,yet try not to dwell and make forward thinking plans--like booking vacation homes months ahead--hope your have a peaceful and memorable Thanksgiving with those you care most about--Kaylie{Candace}

  • threetree
    threetree Member Posts: 1,157
    edited November 2021

    Kaylie/Candace - I know just what you mean about having someone to talk it all through with. Sometimes all you need is just a good friend or two. I've found that sometimes even strangers have the right answers.

    Wish I had 3 dogs to lie on the bed with me!

    You have a wonderful Thanksgiving also!

  • cm2020
    cm2020 Member Posts: 530
    edited November 2021

    ThreeTree...Ugh, I am really sorry you are suffering so much and haven't found the magic mix of solutions that would help you feel better. It is profoundly sad that your ex-husband's crappy response to your cancer was still better than my estranged husband's reaction. They both fall in the "heartless" category. I have been very lucky with my doctors and I am very grateful for them. It stinks that all providers aren't as caring and sensitive as they really should be. Sending you a lot of hugs.

  • threetree
    threetree Member Posts: 1,157
    edited November 2021

    cm2020 - Thanks so much for the concern and sympathy. I have good days and bad days and I'm actually chugging along and rolling with it. It just fluctuates so much! I have found some things that help, so it's not all bad. Yes, "heartless husbands" (current or ex) are a breed unto themselves for sure. I'm just so glad that you are happy with your doctors. Overall most of the medical people I've dealt with have been fine, but there's always that "here and there" and I do have some serious doubts about the oncologist's capabilities and knowledge, but that's a "whole 'nother story".

    Hang in there with your home situation and I hope you have a very warm and meaningful Thanksgiving.

  • cm2020
    cm2020 Member Posts: 530
    edited November 2021

    ThreeTree...You are very kind, thank you. One thing I forgot to comment on that you mentioned is the brain fog. That is a real b*tch! I noticed it during radiation but then it got somewhat better. But it is definitely worse the longer I am on Letrozole. You are right that side effects fluctuate! Something will be bad for a while and then kind of correct itself to a degree.

    Happy Thanksgiving!

  • lalbo
    lalbo Member Posts: 68
    edited December 2021

    I've been on letrozole for a little over a month, I've been feeling blah as well. I'm "glad" it's not just me. I was wondering what was wrong with me, however I did suspect the AI. I wish there was something that would help, other than sheer will power to put on a happy face.

    Ex's - I'm sure mine knows about my bc (through my kids->ex-MIL->him). On the one hand I think he would be glad since he's so bitter. On the other hand, he probably wants me to live a long life so his alimony will continue. He's a winner! not!


  • threetree
    threetree Member Posts: 1,157
    edited December 2021

    Lalbo - No you are not alone with the Letrozole side effects - not by a long shot.

    Former spouse stuff: Interesting that you brought up the money stuff. Mine emailed me the other day and asked how my health was and if I had retired at all (we had had some email conversations about this earlier in the spring, so it wasn't out of the blue). Well my situation is the opposite of yours. He retired last year and I get some of his pension. The "nice" part of me wanted to thank him for asking about my health and wanted to think that he might just truly care on a certain level, but that "negative" side of me couldn't help wonder if he isn't trying to gauge my situation in hopes that I won't be around all that long and he can get his full pension back. Mixed emotions and thoughts for sure.

  • celiac
    celiac Member Posts: 1,260
    edited December 2021

    ThreeTree - Generally speaking, if he paid into and is entitled to US social security, and you have not re-married, you also get 1/2 of his social security, or your social security, whichever is higher. This entitlement does not affect his social security.


  • threetree
    threetree Member Posts: 1,157
    edited December 2021

    Hi Celia - Thanks for the reply. Yes, I'm already collecting "half" (it's technically your own plus whatever it takes to make "half" of the other spouse's), and he gets his full amount. Mine will be higher at age 70 and I can switch to my own then. Another year to go!

  • sarahmaude
    sarahmaude Member Posts: 326
    edited April 2022

    I just wanted to check in here with my positive experience with anastrozole. I started taking them about a month ago, prior to surgery as a stop gap when my surgery was delayed due to a DVT in my arm following my breast MRI. I was pretty worried about joint pain, depression, constant hot flashes. I do have maybe one hot flash a day. I mostly feel like my scalp is hot. Tends to be at bedtime. I just uncover, drink a cold drink and it quickly passes.

    I did work with my psychiatrist and switched my antidepressant from Zoloft (SSRI) to Pristiq (SNRI) as it seemed to make sense both with my anticlotting med (Xarelto) and anastrozole. I cannot take Tamoxifen due to blood clot risk

    So far, I’m very relieved about the lack of side effects. So, I just want to share my current success on my AI.

  • momwriter
    momwriter Member Posts: 276
    edited April 2022

    Hi,

    I've been on anastrozole for over 2 months after 8 years on tamoxifen plus a few months break. Overall I'm tolerating anastrozole well- I exercise a lot - run 3 miles regularly and that helped. I did feel a melancholy at times that was unusual for me but between running and exercise I took care of that.

    Fast forward to last week, I tripped on a trail run and ended up hurting my shoulder- it's very painful. It's diagnosed as bursitis but could be rotator cuff. I'm on naproxen daily for a while.

    I am worried that the AI will slow my injured shoulder from healing since the main issue is inflammation. So I want to stop it while healing then start it up again. I only thought of this the other day and haven't called my MO yet but I wanted to know what the "hive" thinks. I want to get better as fast as I can and get back to running and hiking and yoga.

    Does anyone know how much harm can come from taking off a couple weeks of an AI?

  • cindyny
    cindyny Member Posts: 1,108
    edited April 2022

    I’ve had surgeries, injuries, etc while on anastrazole and it has never interfered with my healing. Last surgery was for a proximal hamstring avulsion with bone. Recovery is long but the surgical site fully healed without issue. I just keep taking that little white pill

  • jkl2017
    jkl2017 Member Posts: 279
    edited April 2022

    Momwriter, I have been on an AI for almost five years and have taken occasional breaks of up to a month (with my MO’s blessing) so I think you’re safe in discontinuing your AI temporarily. However, I am currently healing from two total knee replacements (one in September of 2021 and the second in February of 2022) and am healing well and right on schedule. There is a tremendous amount of inflammation involved in this surgery so it seems that taking an AI doesn’t affect healing of inflamed tissues. Whichever route you take, I think you’ll be fine and back to your active life in no time. Good luck

  • momwriter
    momwriter Member Posts: 276
    edited April 2022

    Thanks all for the info- I've decided to stay on it and I am healing... more slowly than I'd like but not more slowly than is considered normal for this thing. I appreciate the counsel. jk-good lucky with your healing!

  • indahood
    indahood Member Posts: 122
    edited May 2022

    Hello ladies. I have been on AI's for 4 years now. Unfortunatly, I have not been sexually active during this time,. BUT I got lucky and found out that after 4 years on Aromatase Inhibitors, I cannot partake in sexual activity. First off, my inner labia is now "glued" to my outer labia. This does not cause me problems, but was very shocking to my doctor. Secondly, Sexual intercourse was a no go, most of my inner organs have collapsed and I have rediculous prolapse issues and of course, dryness. Soooo lots of cuddling but hmmm no sex.

    I have since changed to Tamoxifen. I am 59, and now am experiencing severe mood swings that are affecting my professionalism at work. I'm so angry.

    any help out there?

    think I'm going to quit all hormone blocking therapy.

    indahood


  • sarahmaude
    sarahmaude Member Posts: 326
    edited May 2022

    I have no experience reladvice, just want to say I'm sorry you are having such a terrible time with anastrozole. From my reading, I think that it's important for women with our tumor type to take an aromitase inihibitor over Tamoxifen. Have you tried the other drugs in that class?

    Also, I think you need a consult with a gynecologist. You shouldn't have to live with your current situation. They see worse than what you described and I'm certain an empathetic one (I'd look for a female personally) can help. There is a thread here called I want my mojo back that has a lot of advise that may help one you can be helped by a gynecologist . Changing endocrine therapy in itself is unlikely to undo what has happened.

    Breast cancer survivorship. The gift that keeps on giving. Ugh.

  • harley07
    harley07 Member Posts: 247
    edited May 2022

    Tamoxifin and AI are both used for estrogen positive BC. Your MO makes the recommendation to use one or the other based on the individual.



  • mle42
    mle42 Member Posts: 124
    edited May 2022

    Indiahood, there is help out there. ask your doctor or gynecologist to refer you for pelvic floor physical therapy. Dryness, prolapse, and all of the associated issues can be treated!

  • jrnj
    jrnj Member Posts: 407
    edited May 2022

    indahood, so sorry you are going through that. I know it's not funny, but it did make me laugh the way you told the story and wonder what the heck is going on with me as I haven't checked it out in several years. And I remember you from the DIEP page bravely posting your picture. I also have been suffering badly on AIs, but am afraid to switch to Tamoxifen due to studies that show it doesn't work as well for ILC. I'm only 2 years in though. That's disappointing that Tamoxifen is also problematic, it's my last hope.

    Harley07, Different Drs. have different opinions for the same patient. I got several different opinions on chemo, surgery and endocrine therapy. Sloan suggested right to AIs with ovarian suppression even though I was pre-menopausal because they are supposed to be more effective.