Arimidex - Coping with the SE's
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Good idea, Letty. My mother passed of BC and my sister was dx'd exactly one year before me. Nothing genetic showed up in tests, but it could be an undiscovered gene. I will take the hormone and stick to it as long as possible. Two weeks in and nothing I could single out as a SE yet. Cancer is so prevalent and many more people are living with CA so much longer - just wised they could find the cause.Good luck!
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I finally accepted after long internal battle that I have to be on hormonal blocker for probably 10 yrs. Rads will be completed today and I have appt w RO for the purpose of AI script. I still fight internally that I will be paying good money for something which could give me a few SEs.
Decided on brand name despite high price. I found ways to reduce brand name AIs as form of copay cards. Will be branded by Novartis or AstraZeneca by agreeing to be included in exchange for the price reduction. Well I have been marked by all insurance companies due to BC dx anyway.
Mimi
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Hello again everyone, I posted earlier about SE from Anastrozol, I presumed. I had general malaise, aches, in my arms, feeling tired at neck, and lower legs, calf, ankles sometime feels like weak, and the bilateral hip pain that's been there since the beginning of Anastrozol. From the start taking AI I experienced stiffness in toes, fingers and couple weeks later the hip problems. I called it hip problems more than pain because it bothers me when getting up from sitting too long, or getting down from a car, I drive a van. So in 09/05; I started to have some feelings of weakness in the lower calf, and ankles, comes and go, the hip flares up and it goes around the lower back left and right above the butts. So do the hip pains increased over time? And how does anyone alleviate that? I do stretches for the lower back and walking as much as I can. But recently, I adopted several cats and have been cleaning and mopping my house. I don't really want pain meds unless the last resort. I don't really want a bone scan unless it's really necessary. Thanks for any inputs, suggestions.
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I've been on name brand arimidex since May 9. So far, I've had minor SEs which I'm really not sure is associated with the Arimidex or just the aging pricess. I know yoga has kept me limber and flexible. It also helps with maintaining bone density. I do take Prolia injections every 6 months. I didn't have any side effects from the first injection. I truly believe keeping active through regular exercisie is crucial in fighting off the joint pain associated with these hormone inhibitors. I started with gentle yoga and now I mix it up with other classes. I do try to get to the gym, but right now yoga comes first. Do I get stiffness and soreness? Sure, but I had that before the Armidex. If my body needs rest I give myself a day off or two from exercise. But, now it's no longer for vanity it's vital to my well-being. Warm baths with mineral salts helps too. CVS sells one with lavender and it's heavenly,
Honestly, I'm trying to take it one pill, one day at a time and pray my SEs will continue ton be manageable.
I use retaine for my dry eyes which was recommended by my optometrist prior to my Dx,
Gentle hugs to all as we navigate through this BC maze. It "ain't" easy and some days are better than others,
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Yoga is wonderful, and any exercise which keeps you moving will help to keep the aches and pains at bay.
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I was taking Aramosin but the SE were just horrible. Went on Arimidex in fall 2016. Didn't experience any SE's til past few months. Now I have joint & muscle pain & weakness, some fatigue, weight gain (I completed chemo January 2016 after double mastectomy ).
Positive PALB gene, Triple Neg. Strong family is of breast cancer.
I wonder if these AI's will really make a difference in my survival rate. If I stop taking them, I'd be able to lose weight & exercise more.
My quality of life is deteriorating. I'm 65, try to go to gym, take chair yoga, swim, Cancer Wellness Exercise Group.
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Birdie, if you are triple negative, there would be no reason for you to be on an anti-hormonal.
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I posted earlier about bilateral hip pains and followed someone advice, took Claritin, and it helped right away. I only took it Monday this week and didn't have to take it again. I also started taking Selenium and Magnesium to add to the list of vitamins and supplements like calcium. I also resumed hot bath which also makes my aches, stiffness Alot manageable.
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I am reading about aches and pains from anastrozole and now I wonder if my hip bursitis is from the anastrozole. Has anyone had bursitis?
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Sophiee....so sorry you are suffering. Joint issues are a common SE of the As. Your hip is a major joint. IMO you should discuss with MO and maybe look for an alternative. Also have you tried Tumeric? Its an anti inflammatory that might help. Good luck and keep us posted.
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Sophie, That was one of my issues among many. If was not so bad on Arimidex but debilitating on Femara. Maybe a different ALS would help. You could ask you MO.
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Is anyone taking glucosamine and chondroitin supplements for joint pain? I read a possible side effect can be hair thinning? Anyone know about this? Also is anyone taking omega 3 fish oil for joint pain? I will call my MO to see if these are OK to take along with Prolia injections. Getting restless leg syndrome at night. Anyone experiencing this? Gentle hugs to all.
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I have restless leg syndrome, Butterfly, but that’s part of my post-polio syndrome (not related to the AI). Is the Claritin not doing its job any longer? I started taking magnesium (250 mg daily) and it seems to be helping a little bit with my irritability and depression. My pharmacist was going to get me Teva again but it’s currently unavailable. I told her I’ll stick with the Accord for now - it’s a known enemy, I told her!
MJ
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Butterfly, I've taken glucosamine & chondroitin (in the form of Cosamin ASU) for several years for my arthritic knees. But the additional pain I'm having since starting anastrozole hasn't responded to the Cosamin or to Claritin. My orthopedist recently recommended Naproxen (an OTC NSAID) & it has worked amazingly well. I also think regular exercise helps a lot. (Re hair thinning: I never had any problems while on Cosamin but have noticed a minimal amount since I began the AI.) Good luck finding something that works.
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Hi Tapper, thanks a bunch for your reply. Try to get the Teva when you can. I'm on name brand and most days my joint pain is manageable. Best regards!
Thank you also JKL. I've been taking ibuprofen but I know naproxen has a different formulation so will look into switching. I’m exercising regularly and yoga has helped a lot.Many thanks.
Also looking into therapeutic massage offered by my cancer center. It's pricey and not covered by insurance but designed specifically for cancer patients.
Sending positive energy to all and Happy Halloween.
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Butterfly1234,
Regarding thinning hair, the dermatologist I see has me on several over-the-counter supplements as well as prescription pills, shampoo, lotion, spray, and injections in my scalp (those happen every 3-4 months and aren't as bad as they sound). It has all made a big difference for me. He told me he treats lots of women who have had cancer.
Don't go to just any dermatologist; it needs to be someone who deals with hair issues.
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Sophie, I had bursitis in my hip for the first time after starting anastrozole. The dr. Gave me some exercises and it went away. I try to be more careful where I walk as I think running on uneven ground caused it.
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Butterfly--hair thinning is a known side effect of the A I s.
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Thank you all. I’m not experiencing hair thinning at this point, thankfully. I read that a possible SE of the “Move Free” glucosamine/chondrotin supplement may cause hair thinning. So, I decided not to take them.
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Butterfly12- I have restless leg syndrome and my doctor said low levels of iron can cause it... she tested me and I did have low levels of iron - I now take iron and it has helped - and she gave me a prescription also... helps so much
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IamNancy - thank you for the tip on iron. I'm seeing my MO in December and will request full metabolic panel including Vitamin D.
Lowrider54 - not sure how old you are but those of us in post menapause and later years have that weight distribution in our tummies. I'm exercising and so far haven't gained any weight on Arimidex but my body certainly has undergone normal middle age changes. I've never been overweight but I work at it. I read a long time ago that it's part of the normal aging process.
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Anyone done or almost done with their Arimidex 5 years therapy? I will be done with mine in a week. On my last onco visit, she asked me if I want to continue taking them for another 5 years, since I'm doing well with it and has fewer side effects. good thing I have read about it before hand so I told her No, she readily said--"That's ok, there's not a lot of benefit for you huh?" why would I want to continue on when I'm already having joint pains and already have osteopenia? (very mild bone loss, just a bit higher than normal is what she told me) I also can't lose weight, I have no problem gaining though.My BC is ER+ stage 1, I had lumpectomy with radiation, no chemo, negative nodes and low recurrence rate, I also had total hysterectomy. I read that women who has higher stage BC or high recurrence rate and positive nodes will be good candidate for the extended Arimidex therapy. What do you ladies think of this new timeline they're doing with Arimidex?
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Butterfly1234, I wouldn't expect you to know this, but lowrider54 passed away five years ago.
Clariz, I think many of the previous posts in this thread clarify which people are planning to continue past five years. I know there is no complete evidence that more than that is effective (only anecdotal), but as a Stage III-er, I'm willing to live with my side effects. I've completed nine years and plan to stay on it as long as my onc will prescribe it and insurance will pay for it, because I truly believe it is what is keeping my BC at bay.
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Hey:
I am on Arimidex 6 months now. I have one sore hip, insomnia most nights, and migraines.
The newest side effect - memory issues. My brain feels foggy. A friend said I am thinking and responding like I have pregnancy brain.
Anyelse suffer from memory issues?
wallan
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Yes, wallan, I’ve been having memory issues. My pharmacist told me that’s not a SE of anastrozole; she said it could be dementia! Thanks a lot! But I find myself knowing there’s a certain word I want to use but I can’t find it. I have to quickly substitute another word; I end up stalling in a conversation, feeling somewhat like a fool. Last week I was typing notes in a meeting and had to type “color.” I knew it started with “c” but for the life of me, I couldn’t think of what came next. I tried to visualize the word but it wouldn’t come. Terrifying! My brain definitely feels foggy. I didn’t have chemo but others have told me this is similar to chemo brain. After all, this drug is a chemical we’re putting in our bodies.
I see my MO next month and I’ll run down my list of SEs: foggy brain, numbness in my left hand, irritability, persistent cough. Actually, they’re all manageable - I don’t have joint issues (dare I even say that out loud?) so I’m reluctant to switch AIs for fear of the unknown.
MJ
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MJ- sometimes the docs don’t differentiate between SE of the drug and SE of the effect of the drug. Low estrogen can cause that foggy brain. What does an AI do? It blocks the process of fat turning testosterone, progesterone & DHEA to estrogen. If your ovaries don’t work anymore/have been removed and now you’ve blocked the other estrogen supply, you effectively have low estrogen. But the AI didn’t cause the foggy memory directly. Hope that makes sense
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Tappermam383:
I am sure you don't have dementia! Aahhh...
I do think its due to low estrogen and possibly lack of quality sleep. (for me at least).
My MO told me my migraines were not due to Arimidex and my GP and pharmacist told me they were.
So... who knows what is what.
All I know is I have trouble remembering words sometimes too. And names....
sigh..
wallan
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Thanks, Lula - that does make sense. I had a complete hysterectomy in 2008 due to a pre-cancerous condition so I’ve had low estrogen for years now. So even if the book the pharmacist dragged out to show me the list of SEs from anastrozole didn’t list foggy brain, it’s most certainly a side-side effect!
MJ
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I hate the weight gain. It's making my LE worse and I'm not used to being carrying around more pounds. Last time I weighed this much I was pregnant! For those of you not getting a good night's sleep and dealing with foggy brain, invest in a good mattress if you can. I just bought a DreamLux from Mattress Firm and I sleep like a baby! I would think any temperpedic type of mattress would be the minimum
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HomeMom, how much weight did you gain? Did you find yourself hungrier ( so eating more calories) or too tired to do your usual exercize ( so burning less calories)? I am contemplating arimidex initiation for my low-grade lesion, with a plan to stop if intolerable side effects, figure I should do something as I am declining radiation, which could easily cause unacceptable irreversible side effects with my risk factors.
I am also already on prednisone for years for my autoimmune conditions, it makes me hungrier, less active and with proximal muscle weakness, and also shifted more of my body mass from lean muscle to fat, which burns less calories. So significanlty more weight gain with arimidex not easily controllable with less calories and more movement, i.e. if it shifts body mass from muscle to fat even more, would keep me overweight at my 27-28 BMI, or make it worse, and thus not help my BC recurrence risk, as obesity increases risk independent of exercise
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