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For Arimidex (Anastrozole) users, new, past, and ongoing

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Comments

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Another thing that can help, is Claritin (not the "D"). It works on joint stiffness. I've taken it for several years along with Benedryl (which works on my allergies and Claritin doesn't). Seems to work for me.

    HUGS!

  • janeqpoppy
    janeqpoppy Member Posts: 28

    Oct 21, 2019 02:28PM twolutzjo wrote:

    I have to decide whether to take tamoxifen or an aromatase inhibitor. I am concerned about taking either of them. I was having some heart issues about five months ago......and I have osteoporosis and am taking meds once a week for that. Any help or thoughts out there. Finishing my radiation tomorrow, seeing the oncologist to talk about the estrogen blockers. Other than this big decision I am feeling good. Have a rash from the radiation but nothing I can't handle. Wish I had found this site earlier......but better late than never.
    _________________________________________________________________

    twolutzjo: re tamoxifen v. an aromatase inhibitor- a girlfriend of mine started on tamoxifen even though she is post-menopausal and it caused two blood clots in her lungs. That is a known side effect of it. Her onc took her off for three months and put her on a blood thinner. She hasn't gone back on anything yet. We have the same onc and my friend is 68, so I don't know why the onc put her on tam first and not an AI. If you have had heart issues in the past... I would research the heck out of this before you see the onc. Go in there armed with info and questions. Best of luck!

  • missouricatlady
    missouricatlady Member Posts: 894

    Pontiac Peggy, thank you for your wonderful tips!!! I appreciate it very much! Hugs, Lisa

  • mac5
    mac5 Member Posts: 85

    Just going to put this out there for general knowledge..soaking hands and feet in distilled white vinegar and warm wate will help prevent neuropathy and nail loss. The chemo builds up as “salt” in the nail bed. The vinegar water dissolves the build up.

    Works with Tamoxifen, Taxotere, Abraxane, Exemestane, and Fluoroauracil or combinations of these.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    MissouriCatLady, hope they work for you.

  • mactaz
    mactaz Member Posts: 592

    mac5, thanks for the info. I will definitely talk to my Onc about this, I will see him in a little over a week. I appreciate you posting this info.

    I’m still doing fairly well after my three week vacation that ended August 1. Moods are definitely better but have a few “fly off the handle moments” and I’m working thru painful joints. Next month will be good measurement for me, it was 4 months after I initially started anastrozole when things fell apart, it will be the start of month 4 on the 1st of November after myvaca. I have decided I want to stay on AI so cymbalta could help.

    Thanks again and will let you know what he says. Hugs.

  • mactaz
    mactaz Member Posts: 592

    mac5, wish I knew about the distilled white vinegar before, I ended up with neuropathy in hands and feet but I think I'm one of the lucky ones, numbness only - no pain. More good info.....

  • missouricatlady
    missouricatlady Member Posts: 894

    Mactaz, here and supportive of your staying on AIs. Keep us updated please on Cymbalta, I would like to know how that goes. I got this in the mail yesterday, in case it might be of help to anyone.

    image

  • BlueGirlRedState
    BlueGirlRedState Member Posts: 900

    TwoLutzjo - there probably is no single right answer on Tamoxifen or AIs for post menopausal. Talk with your DRs on risk/benefits/SEs of both and how they relate to your own personal health, and if you so have SEs, options for mitigating them. The reasearch seems to be constantly changing. My own experience with BC is probably very different from most women. This is the 3rd time for me, and my oncologist feels strongly that each is a "new BC" rather than recurrence, but when pressed, there is no real way to know, even with genetics, since BC mutates so much - so it could be the "same", but isn't because it mutated. A recent PET scan showed no mestatis, fortunately. A genetic profile showed no known markers for almost 30 tested for. I was ready to throw in the towel this time, and not do anything about it, but realize I enjoy the outdoors too much to do that and there are still adventures out there I have not done. The first time with BC I was given tamoxifen, even though post menopausal. I did experience some leg cramping, and magnesium really seemed to help. The oncologist I had at that time felt more confident about tamoxifen than AIs. The second time I started with a generic AI, after several months I asked the oncologist(different oncologist) to switch it to the brand name because of joint stiffness and trigger finger. I have taken tumeric supplements for years and started adding tumeric/pepper to meals, but that did not bring relief. By the time the Rx cleared for the brand name, my fingers were feeling better, so I did not try the brand name, and stayed with Tamoxifen. This third time I am taking Ibrance (in hopes of shrinking tumor) and the brand name Arimidex (Eagle pharmacy in Florida). Have taken this for 17 days. I think there is a slight increase in stiffness - same finger (last time several). What ever you choose, you should be able to switch.

    Exercise very regularly, if not at the gym, then walk/hike, weights, stretch, swim, x-country ski etc.

    Supplements: GAIA turmeric-joint; glucosamine-chondroitin; magnesium glycinate; biotin; potassium-iodine; C; B-complex ; D; Fish oil (but not now). For a year or so after bi-lateral used Juven Nutritional therapy for wound healing with 7g arginine, 7g glutamine for about a year. Often add turmeric to meals. Ran out of fish oil supplement that I liked, other brand caused fish burps, so have not taken for a while

    2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.

    2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018

    10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. Trigger finger seemed to be getting better, but now 4/2019 seems worse, is it the break from added turmeric to meals?

    7/19/2019 - swelling in R-arm, opposite side from where lymph nodes removed. Noticed 6/18/2019. Could have been swelling earlier but wearing long sleeves. Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. Started seeing lymphatic therapist 7/2/2019.

    8/2019 CT, Breast/chest , neck/thyroid ultra sound

    9/2019 DR ordered biopsy, said it could be lymphoma, cancer, benign lymphatic. Biopsy R-axilla. Cancer. Genetic test showed no known markers (20+ looked for)

    9/29/2019 PET scan, no indication of spread. Arimadex and Ibrance prescribed to shrink tumor prior to surgery

  • cindyny
    cindyny Member Posts: 1,326

    BlueGirlRedState

    I'm sorry you drew the short stick, 3x w BC is way more than anyone deserves.

    I had genetic testing too, 27 sets I believe, all negative. But they preface it by saying "known" mutations, you could have an unknown. Best wishes on shrinking that tumor down and getting your 3rd BC surgery behind you! HUGS

  • twolutzjo
    twolutzjo Member Posts: 18

    BlueGirlRedState

    Thanks for all the information. I did go armed with my daughter and questions. Got them answered and was put on Femara(generic Letrozole). Walk and have been walking prior to everyday. Am thinking positive and am keeping a journal. I see my MO in about 3 weeks to see how the Letrozole is working on me(SE). Tamoxifen was not a choice and I wasn't in favor of it anyway.

  • twolutzjo
    twolutzjo Member Posts: 18

    JaneQPoppy

    I saw my MO and talked about choices. Tamoxifen was not even on the table. I am taking Femara(generic Letrozole). Hoping SE are minimal. Keeping a journal to keep tabs on SE. Will keep posting as to how it is all going.

  • janeqpoppy
    janeqpoppy Member Posts: 28

    twolutzjo, that makes sense!

    ThumbsUp

  • missouricatlady
    missouricatlady Member Posts: 894

    This arrived in my email this morning, "Supplements: What you Really Need - interesting..


    https://www.webmd.com/vitamins-and-supplements/ss/slideshow-supplements-myths-facts?ecd=wnl_spr_103119_REMAIL&ctr=wnl-spr-103119-REMAIL_nsl-LeadModule_title&mb=bmO9p5d0JLrIsSlj0570bxJZpsk9@mj5ES9aOof3qgc=

  • Chris203
    Chris203 Member Posts: 10

    Hi, I'm new to this community. I have just finished radiation after having gone through chemo and right breast lumpectomy with reconstruction on both breasts. This morning I started taking Anastrozole (Arimidex) as the 5 year preventative plan. I am surprised to see how many people are having side effects from it. I was told that I may get night sweats and mild nausea. I am having a bone scan later this month and have been put on Prolia after the results come back. I am 77 and have some stiffness in joints now, especially when getting up after sitting awhile, but nothing I can't handle, . I do have quite severe neuropathy from the chemo in feet, legs and finger tips which makes me feel like a real clutz at times. However, as much as I hated chemo and its effects, I did well with surgery and radiation.

    I guess I am just wondering how much effect the Arimidex will have. I am still being infused with the Herceptin and Perjeta every three weeks, but I finish that on December 30th. Sure was hoping that I'd be all done by then. Now I have to worry about the se of Arimidex !! Would appreciate any suggestions to overcome side effects.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Chris203. I'm 74 and just finished 5 years of Arimidex. I had very few SEs. Keep in mind that many women do NOT have SEs from it. Obviously many do. You never know. I had no hot flashes (didn't have them with menopause either). I was creaky before I started it and that didn't improve. I did take regular Claritin (NOT D) and that seemed to help. BTW, I could still take Benedryl for my allergies (Claritin didn't work on them). My hairline was already receding and that didn't stop either. I never had nausea, ever, from Arimidex.

    Don't anticipate that you will have side effects. No one seems to be able to predict SEs on any particular person. About the only thing certain is that Arimidex can be hard on the bones. I took Fosamax and I still am until at least June when I see my MO. I started with mild osteopenia and have remained the same.

    I'm glad you did well with all your chemo, surgery and rads. Hopefully all those SEs will go away with time. Keep us posted!

    HUGS!

  • ingerp
    ingerp Member Posts: 1,515

    PontiacPeggy!! How are you feeling? I know you had a pretty easy time with the SEs but I'm wondering if you've noticed any changes since going off the AI.

    Chris203--I think women who start an AI with higher hormone levels have a tougher time with it. I don't think I had much estrogen going in, so didn't have any hot flashes (although did during menopause). I'm a little bit stiffer, but exercise regularly and think that really helps. I've noticed a bit more fatigue--in fact I'm going to try Exemestane for a month or two and see if that's any difference. If not, I'll go back on Anastrozole, which I've been tolerating pretty well.

  • Chris203
    Chris203 Member Posts: 10

    PontiacPeggy

    Thanks for your prompt response. I never got the hot flashes either while going through menopause so hopefully will not with this. I did see in another post somewhere on this that hair loss was mentioned. Of course I lost my hair with chemo, and it has come back so curly that I can't do a thing about it. Usually have straight hair. LOL. Is hair loss a possibility with Arimidex?

    My friends are amazed at how upbeat I am through this whole ordeal. They have been so supportive of me so between them and my faith I am doing very well.

    Thanks again for your reply.

  • Chris203
    Chris203 Member Posts: 10

    Thanks Ingerp. I didn't have a problem going through menopause so hopefully will be okay with the hot flashes. I am just getting back from my fatigue with the chemo and radiation so we'll see how the Arimidex does. Hopefully will be able to get back into pool aerobics for my exercise. Appreciate your input.



  • hikinglady
    hikinglady Member Posts: 625

    Chris203 I've been on Anastrozole for 1 year. Zero nausea ever, and super mild 'warm' flashes occasionally. A little sleepy when I first started it, for a few weeks. More stiffness now than before starting this med, and I am solving that pretty well with 1 hour of exercise every day. When my muscles are stronger, my joints complain less. When my arthritis is worse than usual, I am comfortable if I take an NSAID (Ibuprofen or Aleve OTC, or my Rx Meloxicam). As PontiacPeggy points out, lots of people are doing just fine, or have SE's that are really manageable.

    I've heard of hair thinning on AI's. After 1 year, I can't tell that I have any hair thinning.

    I see your DX info below your post. If you feel comfortable sharing your other TX info with My Profile set to Public for that information, we can know your dates of what you've been going through.

    This thread might be good for you to look at, as well:

    https://community.breastcancer.org/forum/78/topics/854403?page=40#idx_1184

  • janeqpoppy
    janeqpoppy Member Posts: 28

    I will have been on Arimidex for five years next June. My main SE is constant hot flashes. I didn't have ANY hot flashes when I went through menopause for real 20 years ago, but they started a few weeks after I got on Arimidex. The hot flashes 4+ years later aren't as bad as they were at first, but I still have them-- in fact, I'm having one right now! I feel like Arimidex has completely messed up my internal thermostat.

    I have other aches and pains (sciatica, back pain, and killer shoulder pain) but I'm honestly not sure if they're caused by Arimidex. They don't strike me as joint pain--the shoulder pain feels like muscle pain-- but maybe they are. I'm counting the minutes until I can stop it.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Ingerp, I haven't noticed much difference yet but it's been only 2 weeks. I thought I'd see what is different after a month. I wonder if you are right about those of us not having strong estrogen numbers have an easier time of it. Mine numbers were definitely ER+ but not up there at 90 or 100%.

    Thanks for asking!

    HUGS!

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Chris203 On the hair loss (how ARE you coping with curly hair? I can't imagine - mine is straight too), I already had a receding hairline when I started all this. I think that because Arimidex is suppressing estrogen it causes hair issues. Maybe since my estrogen wasn't fantastically high it mattered on my hair? My paternal grandmother had a receding hairline too so heredity plays are strong role for me. Hopefully you'll keep all yours!

    I'm glad you're do so well. I had a lot of issues caring for my husband when I was in surgery and radiation and starting Arimidex so I never had time to stop and think about what was happening - I was just too exhausted to think. By the time he was in a nursing home and I'd gotten rested, a year had passed since my journey began and the time for introspection had passed for me.

    Take care!

    HUGS!

  • mactaz
    mactaz Member Posts: 592

    Chris203, I have been on anastrozole for about 8 months. Other than the normal aches and pains all talk about I went through a period of blues and couldn't shake it after weeks. My OC took me off it for 3 weeks and then I restarted. So far, knock on wood, I've only had one blue day in 3 months and am hoping it won't come back. I haven't had any hair loss but it grew very slowly I think because of the herceptin and Perjeta. It seems to be growing faster now

  • cindyny
    cindyny Member Posts: 1,326

    Chris203

    I try not to tell newbies what my SE are, as I don't want to "plant" something in their head, if you know what I mean.

    But as someone else pointed out maybe those of us who had more estrogen to begin with, feel more SE on the AI from removing all estrogen.

    So far its all been doable. If given the chance to take a vacation from it, I'd decline. I'd be afraid I'd never want to start it again. 3 years 4 months to finish, ugh.

    You can do it! You've made it through a lot worse than this. HUGS

  • l8blmr
    l8blmr Member Posts: 136

    Just wanted to chime in on the discussion. I've been on anastrozole for 18 months. IMHO, SE's are different for everyone. I'm >95% ER and my side effects are minimal; stiffness if I don't exercise and drink plenty of fluids, 'warm' flash every once in a while, thinning hair. It is a new normal for everyone. The best thing you can do is be proactive for yourself - keep trying different things until you find what works for you; whether it be a different AI, diet, exercise, fluid intake, sleep, etc. This website is super helpful. And I totally agree with CindyNY, don't get something 'planted' in your head. I keep telling myself my 'new normal' is constantly evolving, so go with it. Big HUGS to all!

  • Chris203
    Chris203 Member Posts: 10

    Thanks HikingLady.


    I did put all the information about surgery, chemo and radiation down, but guess it didn't get onto the board. I'll check it out.

  • Chris203
    Chris203 Member Posts: 10

    LOL PontiacPeggy. I do not like my curly hair...can't style it. Too many of my friends like to touch it and are amazed at how soft it is. Very slow growing though. They've known me for most 20 years and can't get over it.

    Sounds like we are on a parallel course. My husband also had health issues while I was going through treatment. Prostrate, heart attack with 4 stents, and UTI which turned into sepsis from the cath. So I understand how you had little time to yourself. I am so sorry about your husband and hope things work out for you. If I wasn't for my faith I don't think I could have such a good attitude.

    Hugs

  • Chris203
    Chris203 Member Posts: 10

    Sorry about the mood swings MACTAZ. I guess that can be quite devastating. Hopefully you now have it sorted out. I finish the Herceptin and Perjeta on Dec. 30th. Maybe my hair will grow quicker after that.

  • pontiacpeggy
    pontiacpeggy Member Posts: 6,338

    Chris203, That's funny about your hair. We spend all of time coping with hair that believes "curl" is definitely a four-letter word and when you get, it's a pain!

    Sadly, my husband passed away in September, 2015. I totally understand how challenging it is to deal with a partner's overwhelming care needs. I don't know how you managed going through chemo. My hubby had Parkinson's, a widow-maker heart attack which caused all sort of motor problems already bad due to the Parkinson's. I couldn't leave him alone - he would fall. My sons separately came in to care for their father while I had my surgery, tag team fashion. Neither of them had a clue how hard it was to care for him, getting up 4, 5 and 6 times a night to help him go to the bathroom, never getting uninterrupted sleep. It was eye-opening for them. When it came time for him to go to a nursing home, the boys were absolutely onboard.

    We all do what we must do. Hope you have plenty of help with your hubby's care. And you take care of yourself!

    HUGS!

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