Wanting to stop anastrozole, I'm at the end of my rope

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I was diagnosed with Stage 3 inflammatory BC in my right breast in July 2016, did 8 rounds of chemo 4 AC and 4 Taxotare. Had a double mastectomy in December 2016 then 6 weeks of radiation. Started anestrozole in January 2017. By June 2017 I was battling lymphedema in my trunk and right arm. I've been to PT 50 times in the last 18 months and have a pneumatic home pump that I use 1 to 2 hours daily. I worked part time from April 2017 to February 2018 and have been full time since then. I m 56, a wife and grandmother. I am so tired I can't think straight and have body aches constantly. I am dizzy, off balance all the time. My fatigue is at a 10 everyday, even after sleeping a full 8 or more hours. (I use a CPAP machine so I know I am sleeping) My mood is miserable and I am always close to anger or tears it seems. I have the skin of a 1000 year old and even the softest toilet paper causes tears to my skin when I use the bathroom, now I have sores there every week and getting any help is like asking for the moon. (on the wait list for a vulva specialist, yes what I am dying to have is yet another specialist that I need to spend $50.00 on to be told, "yeah that looks pretty angry and sore") I can't do a 10th of what I used to do, I can't be a wife to my husband, I am sick of feeling so miserable.

I had a medication vacation for about 6 weeks in August and September, much longer than they wanted to tell the truth, that was wonderful. I actually felt joy for the first time in years, my energy was better and my interest in doing things was drastically improved. I really want to go off the medications but the doc is very opposed. I meet with her this Friday for a real hard look at this issue and I am hoping for some help in making this decision. I do not wish to die, I do not want to be acting foolishly with my health but I am so unhappy and unwell that I think it is reasonable to think about stopping this medication. I want a decent quality of life to enjoy my family so any help is appreciated by me.

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Comments

  • CaliKelly
    CaliKelly Member Posts: 474
    edited October 2018

    Gosh, Dollydeb, you are really going through some sh*t! I have one suggestion to ask your Doctor, I had some real problems when I started anastrazole, esp. vaginal dryness, pain, tearing etc. My Dr allowed me to switch from anas.to tamoxifen temporarily, so I could use Estrace cream ,vaginally. It definitely helped all the symptoms, "down there". She told me very little of the estrogen in Estrace metabolize systematically, when used like that, but it can't be used with anastrazole. After a while, I stopped it and went back on anas. The symptoms seemed much less after that. I was also very worried about lymphedema, having so many nodes removed. I did get axillary cording, but not l.e. I attribute it to my weight training, I've always worked out with weights, and have continued thru out my treatments. Dr wasn't sure if I should, she thought it might causel.e., but no! I am sure it helped prevent it. I think overall, exercise REALLY helps me , physically and mentally, gives me energy when I'm tired. Everyone's different of course. So sorry it's going so rough for you! Ask your Dr about Estrace. I'm stage 3 also, btw

  • muska
    muska Member Posts: 1,195
    edited October 2018

    @ Dolly

    Your MO can give you some vaginal cream that is OK to use (I am on anastrozole and I was told from the start if dryness gets really bad I could use vaginal cream.) I would discuss that with your doc at your next appointment.

    I would also discuss switching to another AI or tamox if anastrozole doesn't work for you at all.

    Not sure lymphedema has anything to do with the medication though.

    Best

  • Moderators
    Moderators Member Posts: 25,912
    edited October 2018

    DollyDeb we welcome you warmly to our community. We are very sorry for all you are going through, and truly hope that your oncologist can help you better manage some of your side effects, and suggest alternative treatments that may suit you better. The others have offered some great suggestions. Please keep us posted, and know you are not alone.

  • DollyDeb
    DollyDeb Member Posts: 6
    edited October 2018

    I am grateful for the support, I have tried the cream, it help a bit but they were worried about the estrogen in it long term. Tamoxifen has been discussed as an alternative but they are hesitant because it is "not as effective" I see the doc this Friday and am going to push for better quality of life and any options she can offer. I guess I want to feel like living instead of dying in chunks every day. It has to be better than what I am living with.

  • Denise-G
    Denise-G Member Posts: 1,777
    edited October 2018

    Have you tried any other AIs? Has your doctor recommended switching you? If not, why? I know numerous women who had a terrible time on Anastrozole, but did well on Aromasin. My advice would be try switching and see what happens. Doesn't sound like it could get any worse. I don't want to regret your decision on down the road as you are a young grandma! I just had this talk with my Nurse Practitioner a month ago. She was telling me how well many of her patients do when switching to a different AI.

    I'm starting year 6 on Anastrozole and my sister is starting year 3. We had a terrible time at first, but about year 3 things settled down. My sister was Stage 3c and I was one node away from 3C, so we just did it no matter what our quality of life. But neither of us had the terrible issues you are having in the privates department! YIKES! That is just awful! Things have gotten 80% better for us as time went on. Our mom had to quit Anastrozole (yes, we are all 3 survivors) because of the off balance issues such as you describe. She had a hard time even walking.

    My sister and I both have LE, but Anastrozole has never had anything to do with it. Usually, that little gift of breast cancer will remain with you, although again, both mine and my sister's have improved through the years.

    Sending support and encouragement to you!!





  • aussieched
    aussieched Member Posts: 244
    edited October 2018

    Hi Dolly, I am hearing you. I took the AI drug Femara for 9.25 years and had lots of side affects along the way. In the end I just couldn't make it to 10 years and the oncologist suggested I switch to Tamoxifen, but that only gave me headaches, so I quit at that point.

    I developed dizziness (vertigo) at about the 4-5 year mark while taking Femara and suggested to the oncologist that maybe it was the Femara. He said he didn't think so, however agreed for me to take a break off the drug. I had 6 weeks off the drug and I have to say that I was starting to feel somewhat better with less vertigo and less aches and pains, and the depression was lifting, but once I went back on it, the vertigo returned to being so bad I could hardly stand upright. This went on for 9 months. I eventually decided to give myself another break from Femara and had a 3 month break. This seemed to totally change the problem and all the vertigo went away. I felt that the 6 week break wasn't long enough to clear it from my system. After the 3 month break, I then returned to taking the AI up to a total of 9.25 years. I would suggest that you should not do this without the oncologist agreeing to having another break from the drug, but I found this was what helped me cope and get through the 9 plus years on the drug. Through all that time I would drag myself off to full time work each day, and looking back now, don't know how I managed to do it, but in a way, I think work helped me, as once I got to work, I had to focus on the job at hand, and not think about how bad I was feeling.

    I do have lymphedema caused by the removal of 30 glands and then the radiation of the axilla on top of it, and have also developed a new disease called lymphangioma circumscriptum which I have had to have 2 surgeries for in the last 12 months, however this was not caused by the Femara, more that my lymphatic system was compromised by all the surgeries, removal of 30 glands and radiation. I have experienced all of the symptoms you have documented above, plus others like eye problems, but I have weathered it all, and try to just do one day at a time, and think that at least we are lucky to have a tablet to take, that might extend our life. I know it is hard, but I think about the end result of still being alive and around a bit longer. I now have very young grandchildren, with more babies on the way and I want to experience all those wonderful experiences, so feel that the tough time was worth it.

    For me, I found the isolation that breast cancer brought was the worst, as I live in the country in Australia and was travelling to a capital city for all my treatment and appointments which was almost a 700 klm round trip (have done 75 trips) and had no one close to confide in. Hang in there with it, but I would suggest another chat with your oncologist to see what she can offer, and if you have any further queries, I am more than happy to help in any way I can.


  • DollyDeb
    DollyDeb Member Posts: 6
    edited October 2018

    Well, my pity party is trying to rage on but I am hearing what you all have said. I will ask about alternatives before I chuck the whole pill plan. I am just so discouraged lately though, I am sick of the body pain, lymphedema swelling and pressure, the constant appointments with doctors and specialists to manage the cancer and all the problems the treatment brought on. I am packed in the pneumatic pump suit an hour at a whack usually twice a day. The fact I need so much time to take pills, put on special lotions, then strap on all the gear just to go to work is miserable. Funny thing? I lost my prostatic breasts in my room a few months back, I was trying to get ready for work and I couldn't find them. All I could think of was the saying "you'd lose your head if it wasn't attached". They were actually under my PJ's that I failed to put away after laundry day. I miss the days I could get ready in an hour, that I didn't need Advil for pain 3 or more times a day, when I didn't have so many appointments to try to get to and still feel like I got no where. I catch every bug and flu all the time, and they are worse then I ever had in my life. The worst is the dark cloud permeating my mind and making me less me and more unhappy. I do not want to live like this for years, I can't imagine doing it for nearly 10 as you did. I love my family, and especially my grandchildren, I will keep trying things for them, but if it is more of the same I am going to choose quality over quantity.

  • CaliKelly
    CaliKelly Member Posts: 474
    edited October 2018

    I I can't blame you at all for wanting quality of life! Who doesn't! I really can't even imagine all the things you're going through! That lymphedema thing sounds like a major pain in the ass! Dollydeb, make your Dr understand your feelings, it's really not that big of a deal to switch to tamoxifen, millions of women do fine on it.AIs are just fractionally better. At least you can try it, or another med. Maybe you wouldn't have ALL the side effects. Even a small difference might help the outlook.When I first started anastrazole I hated It! Sweating , insomnia moody, aching joints. Esp insomnia which aggravated all the other symptoms. Used the Estrace, and tamoxifen for about 6 months, then back on anastrazole, seemed to help all the side effects. After awhile, symptoms seemed to ease off. Also took sleeping pills for awhile, sleep really helped. Make your Dr feel your pain!! There are things to help.🤗 Keep venting here! Love and hugs ,girlfriend

  • Anonymous
    Anonymous Member Posts: 1,376
    edited October 2018

    I hated Arimidex and so did my body. Took it for 18 months and threatened to stop, then my MO made the change for me. I was bloated, angry (terrible mood swings), trigger joints, hip pain on Arimidex. I switched to Aromasin and so far so good after more than 2 years--all those side effects disappeared in about 2 weeks! Some have awful side effects on Aromasin and do well on Femara or Arimidex. Before giving up completely, see if another AI might work better for you. I feel your pain.

    Claire in AZ

  • Wildplaces
    Wildplaces Member Posts: 864
    edited October 2018

    Dolly, from your history let me list the TOUGH things you dealt with in the past 2 years ( we were diagnosed about the same time) - this is MY list is, to remind ME to cut myself some slack, not that dissimilar from yours, apart from having only 😳mild LE.

    1. Cancer diagnosis

    2. Chemotherapy

    3. Surgery Major and pretty life changing, to some disfiguring comes to mind

    4. Radiation

    5. Work loss, financial changes for lack of a better word

    6. Time loss

    7. AI - drugs that without a doubt have a side effect profile that looks sweet when compared to chemo but not so when compared to other medication lets say antireflux tablets

    To be frank its a continuous wonder to me that most of us manage to keep pulling it together and smile, cook, clean, work and communicate with those that surround us in a loving way. So give yourself time to grieve and then start putting "the pieces" back together slowly - for me it took/takes all my strength and courage.

    Change yor AI if you have too. My mother has had too and she is one tough cookie but the joint pains where horrendous. A colleague has switched from Aromasin to Arimidex and is now better on Tamoxifen ( the numbers between Tamoxifen and AIs are different but not as much you might think - ask for specific numbers on prognosis between them when you make your decision).

    Ask for anti anxiety tablets if you need to. I needed sleeping tablets but I am ok now.

    I find swimming or any kind of water therapy helps a lot with LE.

    The oestrogen creams can be useful - I use coconut oil.

    All of this to say - there are so many here who get it.

    Its a crap shoot but you are not alone.( I had to laugh at your breast prosthesis story - I had a unilateral mastectomy no recon, small breasts so I use a rolled sock - and keep a trusty spare sock in my car - I am so busy with life and children I often forget I rush out lopsided....)

    (())☺️🌷🐣





  • AngelaKS
    AngelaKS Member Posts: 71
    edited October 2018

    I feel for you. I hate Armidex. I am on that and an injection of Zoladex every 28 days. I cannot switch to Tomoxifin because of my history of blood clots. I just want to be done with it all. I have been on Lovenox since my last PE in April and I have gained about 60 pounds. I am like you at a 10 (or 35) on the fatigue scale.

    Please update on how your appointment went.


    xoxo

  • Nickel103
    Nickel103 Member Posts: 42
    edited November 2018

    I'm so sorry to see your posts. I am on a different aromatase inhibitor with lupron and my symptoms are similar. I want to quit every day and then I remember my 3 year old. It is so unreal how much the hormone therapy has changed my ability to function...such a hit to quality of life.

    I found this cream to help somewhat - https://www.amazon.com/Organic-Intimate-Moisturizer-Personal-Lubricant/dp/B0071Q5PL0 it's not 100%, but better than nothing. I also really struggled with sleep and have been taking 300mg of gabapentin. Again, this is no miracle but at least helps me to feel better rested most days. I hope either of these might help you a little. I had no clue a vulvar specialist even existed! Please do share if you ever get an appointment and find anything helpful. I'd love to know. Good luck to you.

  • Occovegirl
    Occovegirl Member Posts: 27
    edited December 2018

    Hi Claire

    I have tried all of the aromatasin inhibitors and they have all made me so sick. The joint muscle pain were unbearable. Also the swelling of my hands and feet are horrible. I am hoping to be able to change my meds to another. I have no quality of life. I go next week to the oncology team . Good luck with your journey. It sometimes is just not fair what we all go thru.


  • DollyDeb
    DollyDeb Member Posts: 6
    edited December 2018

    Thank you all for your responses and advice. I was able to give my doctor a full measure of me feelings and she has suggested I try Exemestane which is a sister sort of drug to what I was taking. I have yet to start it due to my not feeling well and the insurance company giving push back. But I should be all set soon. I had other issues with what side effect that required a vulva specialist that was due to the reduced estrogen, the hits seem to keep coming. I am trying to be glad I'm alive, some days are easier than others but I can tell you all know my song well enough yourselves that you could to sing it to me. <3

  • SimoneRC
    SimoneRC Member Posts: 419
    edited December 2018

    This is off topic, sorry. Wondering why many of the posts are showing tomorrow, date, December 12, 2018?

  • Meow13
    Meow13 Member Posts: 4,859
    edited December 2018

    exemestane was better on joint pain but I suffered severe dry eye also puffy face and weight gain. Good news when I discontinued exemestane the severe dry eye cleared right up. After anastrozole, after stopping it my joint pain improved. I have been off for almost 3 years and still have lingering pain. This medicines are brutal.

  • Nickel103
    Nickel103 Member Posts: 42
    edited December 2018

    I actually went to an eye specialist who said they can put something in your eye to help with tear production. They can do it at an office visit. Will report back to say if it helps. It’s so frustrating to have all these side effects and trying to manage them to no end

  • dtad
    dtad Member Posts: 2,323
    edited December 2018

    Hi everyone...just want to say its really sad that you are all suffering from anti hormone therapy. Yes, it does reduce recurrence rates by 50 percent if you can tolerate them! Many cannot. My doc at a major NYC university hospital told me 40-50 percent do NOT complete the recommended years of treatment due to side effects! I don't understand how it can be called an effective treatment with those stats! Also just want to mention that weight loss and exercise has been shown to lower recurrence rates by 40 percent. Both are difficult to achieve while taking anti hormones, especially aromatase inhibitors which are hard on the joints. We need better treatment options! Good luck to all navigating this complicated disease.

  • edwards750
    edwards750 Member Posts: 3,761
    edited December 2018

    I took Arimidex for my first year and then my MO switched me to Tamoxifen because Arimidex attacks the bones and I had osteopenia. I had no problems with Arimidex despite the bone issues but Tamoxifen caused joint pain. I don’t think there is any med that doesn’t cause side effects but there is a difference between managing the side effects and a quality of life with debilitating ones. I know several people who quit taking all of them. One lady is 10+ years out.

    Good grief we have been through enough without dealing with more pain, etc from these drugs. Surely there are meds every one of us can tolerate.

    I was 7 years out last August. I can say with absolute certainty if Tamoxifen interfered with my QOL like it has others I would have reconsidered taking it.

    Diane

  • Meow13
    Meow13 Member Posts: 4,859
    edited December 2018

    Hi Nickel, my eye doctor tried everything to help me. Not much relief it was my oncologist who said stop exemestane immediately. He was right.

  • dtad
    dtad Member Posts: 2,323
    edited December 2018

    Edwards750...sorry you are dealing with side effects from anti hormones. To respond to your comment about how there must be a drug that we can all tolerate, I would doubt that. However, there should be one that more than 40 percent cannot tolerate! That is just crazy IMO!

  • GraceB1
    GraceB1 Member Posts: 213
    edited December 2018

    The cream has really helped me. I felt like my skin was tearing when I wiped myself. The other thing that help is Osphena. It's a SERM, a type of estrogen that cancer doesn't see. I figure a little of the wrong kind of estrogen was better than quitting the AIs altogether which I was very close to doing.

  • 88flood17
    88flood17 Member Posts: 4
    edited January 2019

    Occovegirl, After reading several posts, you're the only one I see that has swelling of the feet. I have just developed swelling of the feet, ankles, and calves and am wondering what to do. Just today I decided to stop the Anastrozole, at least for now. Can you tell me what you do for the swelling? I'm worried the swelling will continue to climb.

  • Lula73
    Lula73 Member Posts: 1,824
    edited January 2019

    Dollydeb - I so wish I’d seen your post months ago! I hope the exemestane helps relieve some of the SEs you had on anastrozole. I can’t understand why docs just brush off what we report for so long. There are alternatives out there with different SE profiles and we all know that there’s no way to tell which SEs, if any, will effect you vs someone else.

    On the vulva issue: coconut oil can really help with the soreness. Sounds simple and it is. The sores sound like they’re going to likely need an antibiotic though. Seems like your MO or PCP could prescribe one for you. My GYN gave me Intrarosa for the dryness and atrophy that cause the pain. It’s the precursor to estrogen. It’s inserted daily and works just on the local tissues meaning it’s not systemic. I use 1/2 of one every other week or so and it gets the job done. Sex became a part of my life again and I was no longer uncomfortable using the bathroom. With the lack of hormones and sex drive i do still need extra lubrication when it comes to sex (especially at the beginning), but penetration overall is no longer painful or uncomfortable. DH and I did try a new lube over the holidays that i picked up on a whim (it was peppermint hot chocolate flavored). It was the bomb. Never experienced a lube like that before and it rinsed away cleanly with just water. Amazing! I can’t remember the name though. I left it at the condo we rented for Dec-Jan. We’re going back this weekend so I’ll get the name and post it then. I hope this helps!

  • PKWGA
    PKWGA Member Posts: 19
    edited January 2019

    DollyDeb, I totally understand getting to the end of your rope. I started out on Arimidex, but my MO switched me to Aromasin due to the horrible joint pain and miscellaneous other side effects. The obvious SE's went away, but I didn't realize the damage that was being done in the background. Now I have multilevel degenerative disc disease, osteoporosis, ruptured disc. My other SE's were temporary, but this is permanent damage, and will keep getting worse with every pill I take. So I'm quitting the Aromasin, and I'm pretty sure my MO will try to start me on Tamoxifen later this month when she finds out I'm quitting. But, no, I'm done. A recurrence would be horrible, but I would like to have a decent quality of life for whatever time I may have, and not spend it in a wheelchair.

    I'm so sorry you are having to struggle with all this, and I hope things get easier. Hugs to all!


  • wallan
    wallan Member Posts: 1,275
    edited January 2019

    I can relate to you ladies. I have been on Arimidex now for 18 months and it is a slug.

    Sleep... its elusive. Sometimes all night no sleep. More often then I like. Doctors suggest sleep hygiene, taking Arimidex in the morning, pumpkin seeds. No sleeping pills. They say they are addictive and difficult to get off. I cannot function well without sleep though. I hope it gets better.

    Then there is the heartburn. MO agrees its from the Arimidex. Suggests taking Proton pump inhibitors prescribed from my GP. My GP thinks PPIs are bad for you and won't prescribe them. He says there is nothing he can do. So I take TUMS (need calcium anyways) and Zantac and try to eliminate spicy food or empty stomachs. It takes the edge off.

    Same as for the lady parts. Bleeding. Soreness. Somedays it hurts to walk or to lie down. I use Replens which stings. GP says there is nothing he can do because I can't have estrogen. He did suggest continue the Replens and try a vaginal probiotic. MO says to try coconut oil or olive oil and to use RePlens every days and KY Jelly everyday on top of that. If the symptoms do not improve, she will send me to a gynecologist.

    And then the migraines - especially if little sleep. And now I am getting bone pain in my fingers and feet.

    I feel old and tired; ummotivated. I am sure a bit depressed too.

    So, I can relate and i feel for you ladies who really suffer.

    Despite all this, I am glad I can take hormone therapy. Its just shy of 15 years since my stage 3 hormone positive BC, so I think this Arimidex is helping with my new diagnosis and helping abate recurrance from the 1st one. Thank goodness for modern medicine. I sure hope I keep it all at bay. I am only 55 (I can't believe I say only 55) and the sole breadwinner in our family. I want to live long enough for grandkids. I love life!!

    Wallan



  • Meow13
    Meow13 Member Posts: 4,859
    edited January 2019

    Wondering why they don't adjust dosages for individuals . Seems like there too many unknowns. Better safer treatments can't come soon enough.

  • Nickel103
    Nickel103 Member Posts: 42
    edited February 2019

    For any of you that have switched type of aromotase inhibitor, or switched from one to tamoxifen, have your side effects lessened? I’m doing Lupron injections with letrozole (femera) for 18 months and the side effects just continue to get worse every month. I’m at the point now where it’s really difficult to walk and to work. I want to just cease taking them and say no...but then I look at my 3 year old daughter and know that I can’t. Hasn’t anyone had luck with a switch?

  • MERMAID_girl
    MERMAID_girl Member Posts: 5
    edited February 2019

    oh my you took the words out of my mouth as I was just having this conversation with my husband the other day!! Aromatase inhibitor MG doseS should be administered according to our height and weight.

  • MERMAID_girl
    MERMAID_girl Member Posts: 5
    edited February 2019

    DollyDeb, I hear your heart and your desires and my thoughts and prayers are with you as you make the decision for quality-of-life. I’m at the crossroads to continue another 6 months or stop at 4 1/2 years on Aromasin — it’s been a LONG 4.5 year journey. May God have mercy on each of us 🙏🙏

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