Doing Well on Aromatase Inhibitors (AIs)
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Juju - brand name Arimidex seemed to have fewer SEs than generic Anastrozole. I bought it directly from Eagle Pharmacy in Florida after DR faxed Rx. Insurance would have charged about 8x what it cost me not to use insurance. But talk to DR aboiut options https://www.eaglepharmacy.com/drug/arimidex
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I am coming up on two years of AI use. I am now using letrozole - Anastrazole made me so dizzy. Have any of you found that SE's come and go? I had trigger thumbs at around 6 months but it went a way before the end of the first year. I have started having trigger thumb and some fingers. Isn't that odd that it came back? My hands are extremely stiff in the morning (another SE that came, went and has now returned.)
I also would like to know if any of you have had depression or anxiety enough that you talked with your doctor and needed help? This has been very hard for me to accept. Take a pill, then take five more to combat the SE's from the first pill!
Annie
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Annie60....I am also on Letrozole and I have have found that the SE do seem to come and go. Some of mine have gone and stayed gone too. As for the anxiety and depression, I haven't talked to anyone yet. My gp offered to give me an antidepressant if I felt I needed it but so far I have not taken him up on it. The last year has been just awful. As bad as cancer was the worst has been the disintegration of my marriage. We are still married, but it is truly in name only. He mentally checked out when I was diagnosed last year and refuses to even attempt to be supportive or caring. He now lies to me constantly and that has just added more pain on top of more pain. One thing I have considered is requesting a Stephen's minister from my church. It would be someone to talk to and just kind of verbally process the immense amount of pain and trauma the last year has brought. I wish you the best.
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I'm brand new to having Breast Cancer and to this site. I began my AI's (post lumpectomy and brachytherapy radiation) and had to stop within 1 week due to SE's. The SE is Anastrazole. I'm wondering if Femara has less SE's? Sorry if this is not the place to ask this question.
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Wow. I'm so sorry about your husbands reaction. I was diagnosed in January with HR+ Her2 -, caught early, no spread to lymph nodes, good possible outcome. My Oncotype DX was 17 so no chemo for me. That said I only spent 1.5 weeks on Anastrazole because I got a severe headache, depression, muscle weakness, anxiety, rapid weight gain (I pretty much got all of the bad side effects). My MD said stop for 4 days then re-start and my symptoms should go away. Does anyone here know which AI has the least side effects or at least minimum of side effects and are there any AI's that don't cause headache or weight gain?
Regarding your husband "tuning out" when you were diagnosed. I work for a healthcare non profit with 9 employees. I have breast cancer, another gal in our office has ovarian cancer and our prior CEO has terminal ovarian cancer and they all share about their families and husbands and every one has a different story about how they responded. Clearly not everyone can handle either losing their spouse or the fear of losing their spouse and they just shut down. That's what your situation sounds like. My husband of 28 years has been supportive, sort of, but interestingly enough I think he felt I was getting too much attention so he decided one week after my lumpectomy to have his diverticulitis surgery (major gut surgery) which I believe was his way of diverting attention back to himself. Who knows if I'm right but it did kinda make me upset that I was still healing from surgery and getting ready for radiation and he arbitrarily sets up his surgery....
So sorry you have this situation at home. It certainly doesn't sound like a good healing atmosphere and Cancer is so stressful for those that have it, we really need stable support.
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Any weight gain with Arimidex? I suffer from headaches as a matter of course in my life, really bad headaches so the anastrazole only lasted 1.5 weeks at which point I had to call my onco and ask what to do as I was throwing up, headache, nausea, sudden weight gain...on and on...I'm hoping you all can give me some guidance on options other than anastrazole that specifically don't give you a massive headache!
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I have been on anastrozole a little over a year. I am 63 and already had some joint stiffness and pain in my hands. It might have become slightly worse but I'm not sure. Reading this board I added supplements tumeric/black pepper and fish oil (both from CostCo). The fish oil is from Wild Alaska fish which is less refined and has less Omega-3 than others but more Omega-7 which was what was recommended for joints. My oncologist when I mentioned it says she takes tumeric/black pepper. It is supposed to be anti-inflammatory. I will say that I used to have soft nodules on the first joint of some of my fingers which have actually noticeably reduced and maybe the supplements did that (or maybe not). Also exercise and stretching help. Also if my hands are achy I wear elastic fingerless gloves - they are really good at night to keep my hands warm which helps.
The most noticeable side affect which I directly attribute to (more) lack of estrogen is dry skin and hair - I used to have more oily skin but now I moisturize and condition!
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Mouse57, may I ask you why are you taking antibiotics for over 1 year? Using turmeric and fish oil for me did create thinner blood and I started to get bruised easily.
KateHanni, how small was your cancer? Do you mind you add the data in your profile and women similar to your situation can connect and let you know what works for them?
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Sorry. (Whoops) I am taking anistrozole- the aromatase inhibitor -I am just allergic to the other so it was on my mind when I typed!! I have gotten the generic version (pf anastrozoleP from two different manufacturers and have not noticed the side effects especially but that is me. Just to let poeple know. Others may differnCorrected it in the orignial post.
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At first my hair was falling out but that seems some what better. I started Letrozole in the spring of 2020. currently I have fatigue and joint pain. I sometimes take Claritin which either helps with the joint pain or it's a placebo effect. I also use a topical CBD lotion for my hands and feet for aches. I recently read mastic gum helps with inflammation and may try that if i can find a reliable source. I'm afraid to change to another Al in case the side effects are worse. I am going to ask onco in July if I can reduce the dose. I have recently weaned myself off Lexapro but I go on and off antidepressant meds all the time... it seems like anyway. I can stand the SE but if they were worse I certainly would try something else. I can't remember easy things sometimes...like how to spell a word or did i turn off the tea kettle. That worries me. LOL I see I'm on the wrong site for doing well.
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I went through all 3 AL's and had severe side effects, went back to name brand Arimidex and only taking half a pill. I was going to increase slowly, but I can't without being debilitating sick. I also do the Patient Direct Program straight from Arimidex. Then I take Effexor, antidepressant, for hot flashes and migraines. It has been 2 years and I am still doing mostly okay
Hang in There. Massage Therapy is wonderful too !0 -
if I may,
Due to DX, I have no choice other than sticking to it. Will be 4 straight yrs in early November. Take brand name AI, 5000mg vitamin D3, women's multi vitamin w two cups of coffee. I try to remember to take cinnamon pills also. At night thyroid pill and 0.25 mg ativan (I use microgram scale to measure Ativan) Breakfast is the most important meal of the day. Go for about 7 mile walk with hubby 3 to 4 times a week. No hubby walk means about 3 to 4 mile which is about 3 times a week.
Started having some pains here and there but I know it has more to do w getting old. Hair loss I hate it but if that is the price I need to pay let it be.
Plan to stick to it as long as possible.
P.S. no tylenol or advil yes I have two drinks every week. No smoke though
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Hi Juju!
I have been on the Zydus brand for about a year and a half (because that is what CVS gives me). I have achy knees, but that is my worst SE. I drink a lot of water and exercise, I think that helps. One thing I have noticed is that my cholesterol went up to the point that I had to start a low dose statin (which did not make me happy!), even after really watching what I eat. I swear there is a link.
Laure
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laurencl,
I just read that cholesterol can go up on the AI. I have achy hands and feet, but once I get moving I feel ok. Until I have to sit for work or drive more than 20-30 minutes, then I'm stiff again. I started taking my 1 mg tablet every other day. I just did this by myself with the beginning of June. I haven't run it by my MO yet. Im curious to see if it helps....thanks for your reply and all the others too!
Juli
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I know this is a post for doing well.. however it seems we all experience some type of SE and are just trying to find ways to cope.
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hi Annie,
I too am experiencing the trigger fingers and very stiff hands in the morning! Weird. I've been taking Anastrozole for almost two years. Excercising my hands and fingers in the morning has helped. good luck to all of us
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KIDI919 - Glad you mentioned how so many on this thread are having side effects. Whenever I read posts here I think it is ironic that they call this "Doing Well on Aromatase Inhibitors" because most of the posts I read are by people who don't seem to be doing well by my standards at least. Like you say, they just seem to be coping and managing some of the side effects to the point that they haven't decided to quit.
I think they should have a concomitant thread called "Not Doing Well on Aromatase Inhibitors" but they don't. That's where I'd post about having side effects but coping with them a bit. I guess either way, the posts get put here.
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It can be hard to find the information you are looking for because it could be posted on one of many threads. There are several for AIs, sometimes reflecting specific drugs, SEs etc. Some of the other threads often post SEs and ways people manage/cope with exercises, supplements, reduced dosage, switching to another AI.......
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I take TEVA brand generic Anastrozole (a bit more than 4 years now). SEs have been manageable and seem to have diminished somewhat as time goes by. Cholesterol was high prior to AI and on a statin, so no big change for me. No weight gain, actually managed to lose weight. Before I retired, joint pain in hands was more frequent - likely due to constant computer keyboard use. Have been very actively exercising since retiring 12/1/19. Drink lots of water! For joint pain - use Arnica tablets and cream/gel (homeopathic). Have taken fish oil, vitamin D, calcium, glucosamin/chondroitin/msm for many years. Hope some of this info is helpful.
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I've been on Anastrozole for 2.5 years now, so I'll share how I'm doing.
I do have worsened arthritis in knees and hips, some hand joint pain, and plenty of general stiffness. All of this was much worse for the first month on my AI, and I was also really fatigued for that first month, then those things gradually receded. I do 30-60 minutes of various types of exercise daily, and sometimes I take Meloxicam or Ibuprofen for the aches and pains. I drink a lot of water, and that helps everything. If I skip exercising one day, or drink less water, I feel awful, so it's pretty easy to keep motivated for both!
My bone density was seen to be Not Great (osteopenia) before starting my AI, so I go in for a Zoladex / Zometa infusion every 6 months. At that twice-a-year appointment, my oncologist also has labs drawn to check most metabolic and organ functions. So, she knows that my kidneys are managing the Zometa, which can be hard on them.
Zometa, which also protects against metastasis to bones, yay, has improved my bone density a bit---this was seen a few months ago, 2 years after a previous DEXAScan.
All in all, I feel grateful to have a medication whose well-researched benefit to me is statistically likely to be really great. No promises, and no crystal balls, but I can live with the discomforts. They're not terrible.
I go hiking, I play classical piano and I ski. My Normal Life stuff still happens. I do have slightly grumpy joints, and perhaps, indeed, they're behaving as if they're 80 years old, not 63. Alas.
For a while after starting my AI, it seemed just impossible to lose a little weight. Besides portion control, limiting simple carbs in my diet, and all those usual things, I added in this extra trick: I started waiting 12-13 hours between dinner and breakfast, and that "intermittent fasting" has helped me shed a few pounds. Yay!
When I've been on my AI for 5 years, my oncologist will run the Breast Cancer Index test, to see if I'll benefit from more years on the AI.
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Good morning to all--Yesterday -the 13th was my 4th anniversary of my dx - I am doing fine- have been on letrozole for almost 3.5 years and have the usual mild side effects- am stiff in the knees when first up in the am and my hands are stiff-I had 2 trigger fingers during the first year ,but that resolved with time--I do not formally exercise but have 3 dogs and a 2.5 acre country property in Vermont so am quite active physically - managing all that--I watch my weight - am within 5-10 pounds of my ideal weight and count my calories and try to eat on a schedule of 0800;noon;6pm--its those in between snacks that creep up on you!
I had a high onco score--45 so letrozole is my best chance against recurrence-and I realize the side effects of a recurrence would be so much worse than from the letrozole- I went into it with the attitude that the med was my best friend going forward and so grateful for that being available-----heading into my 5th year now- a milestone year-though I am one who will probably be advised to remain on letrozole beyond 5 years--will cross that bridge when I get there-best to all,
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i need help adjusting my attitude. Was on Arimidex, only 3 months, taking a break because of muscle pain. it truly was affecting my quality of life...hence the break. however i will start a new one in 5 weeks. i wasn't doom and gloom prior to taking it, mad yes, but positive and thankful to be able to take a pill to lessen my chance of recurrence. This weekend i found myself having the attitude of living on borrowed time.. because maybe the side effects will be the same. Please help me be positive, courageous, and strong... through surgery and radiation i really did have a "phoenix" attitude.. i've lost it along the way and i want it back.
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Stacy, I stayed on Arimidex for a year, until the muscle pain and fatigue affected almost every moment of my life. After a one-month “vacation” all of that disappeared and I switched to Exemestane. It’s not without side effects but they are manageable. Don’t give up! Another AI may be just what you need. You are still living in the shadow of your diagnosis. It will get easier. I can honestly say that I hardly ever think about cancer these days - life is so full of happiness that it doesn’t leave much room for negative thoughts. Give yourself time and lean on others if that helps. Good luck moving forward.
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Hi Kaylie, I'm starting anastrozole on July 1st after radiotherapy and AC + T chemo. I had an oncotype score of 50 and 3pos nodes. We have similar diagnoses and I'm delighted to hear you are doing so well, any advice regarding lifestyle and AI meds.?
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JKL - are you aso taking Afinitor? When the cancer became MBC, my DR took me off Ibrance/Arimidex and put me on,Exemestane/Afinitor. After about 1 1/2 months I started radiation, and that DR had me stop Afinitor during treatment. Now that radiation is over, my regular oncologist wants me back on Afinitor, but at a lower dose because of mouth sores and scalp sores that I experienced.
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good to hear from you- I was stage 2 b--tumor minimally 2cm with 2/2 nodes-grade 3-what a world tilter that was--28 years annual mammos and then wham-will never forget getting that phone call standing at my kitchen counter--I chose TC -4 rounds- due to my age 68 and less chance of losing my hair- kept 80 % by cold capping-yea! Had I been much younger -may have made more aggressive chemo choice but am at peace with my choices--the first year and a half emotionally was very hard but then as time went on I began making forward plans--home improvement projects -travel etc- the best advice i can give you is this--your life is not over or doomed! not at all-- stick to your treatment plan and go on with your life-is the best boost of all--whatever happens in the future is the future -is not now- and I know I am ok today- this week and this month- you will be too--the statistics are very much in our favor--dont dwell-really -live your life now--hugs Kaylie-Candace
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So I woke up the usual 3am with vivid nightmares and found this forum. I am new to site. Been on Letrozole 2 months and getting the full SE now for me. I take it at 8pm nightly. Insomnia has been the worst so far, but I do sleep some because I remember the stupid dreams. Night sweats are bad and I have to pee much more frequently and urgently. Overall not as bad as I feared and I am very grateful no IV chemo for me. Some vertigo and brain fog, mainly remembering words and names, or where I was going in a conversation at times.
Weekly online counseling has helped me vent and deal with the anger and hurt. I have struggled with depression on and off for years, going thru a very difficult divorce after 30+ years and starting over. We all have sad stories, but this year has been truly unbelievable for me. You think you survive 2020 and doing well. Then 2021. January 13 I lost my big brother after a 6 year battle with stage 4 colon cancer that spread to his liver. I always said I would take his place in a heartbeat and meant it. He did every kind of chemo after surgery. On Jan.15th I was diagnosed with Stage IA, Grade 3. Dropdown menu was not working this morning for that. On Feb.4th had lumpectomy starting pre-op at 930am. Woke up in recovery 630pm crying. Found out at 830pm my 92 year old mother passed away @ 930am that same day. I had cared for her past 2 years and kept her safe thru Covid last year. Two weeks prior to my surgery were a waking nightmare dealing with her health.
So as far as the Letrozole and depression, I cannot say. I am grateful my tumor was found early. Had 1st 3D mammogram after breaking my left arm during fall on my crippled Collie-Shep mix puppy pads. Lost him 3 weeks ago then my 13 year old German Shepherd last week. She was totally unexpected. My SO has not been as supportive as I would like, but he is still with me. Intimacy may never be the same, but I am still here and worked a very demanding job thru it all, taking a half day off during radiation boosters near end of treatment.
If I can get thru this year so far, my prayer is you all will thrive. We never know what is ahead, but I sure want something really good to happen about now. Last week I dreamed I woke up with a monkey feeding me cookies. Yesterday it was planning my own funeral, down to being there for it. This morning's nightmare was even worse. Melatonin is not helping with the insomnia. I start yoga classes and PT this week so here's hoping that will help.
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Thank you JKL. "Shadows" perfect way to describe it ~ not where i intend to stay. i guess it's hard for me to lean on my care team, since i work in the cancer center i was treated at! And my husband is an RN which means he knows too much. I did so well through both surgeries and radiation... for a pill to kick me like this is not making me happy! i need to use that energy to push myself out of the shadows.
Thank you, seriously something very important for me to hear!
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Welcome, Dee. I'm so sorry that you've been through so much these past few months. Losing your brother, your mother and two beloved pets is a lot for anyone, so it's no wonder you're struggling right now. (I lost my dad to colon cancer years ago so I know how difficult it is to see someone you love deal with that.). I hope you have friends and family to support you, especially if your SO is not fully up to the task. Try to find some indulgences (a trip to the spa, a day at the beach with a good book, a weekend away with a friend, even a long, relaxing drive to a special restaurant in the countryside) to pamper yourself. And counseling is a good thing to be doing. Self-care is really important!
I initially experienced a lot of sleep issues but found Magnesium Glycinate (be sure it's not another form of magnesium) to really help with insomnia. And you might want to talk to your PCP about any other meds you're taking. I was taking a blood pressure medication that often caused vivid dreams involving animals (who knew such a thing was an actual SE???) Eventually the dreams stopped, but it was sure strange while it was happening. And a suggestion about the night sweats - I have small fans all around my house that I aim at my face when sleeping or reading and they seem to help a lot. I also keep bottles of water in the freezer to hold on my neck or forehead when needed. Good luck!
BlueGirl, no Afinitor for me. (I am not metastatic.) I am sure you can find numerous discussions about the Afinitor/Exemestane combination on thisboard and people here are incredibly generous with information and advice.
You're very welcome, Stacy. Hang in there; it will get better. Lean on your cancer team, if it helps. They probably consider you a friend, as well as a patient. And yes, those little pills pack a major punch sometimes. We just have to punch back harder!
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DeeinNC: So sorry for all the losses you have had in 2020 and 2021. I'm sure your stress level is beyond high and that doesn't help to relax. I have chronic insomnia before my diagnosis but seldom remember dreams. The only time I did was when I was trying melatonin. Perhaps, you can hold that and see what happens. I'm told that too high a dose of melatonin has an opposite effect. I also started on letrozole but after 8 months had to switch to anastrozole. I've been on that for six months and so far, no problems. My MO started me on an antidepressant for the hot flashes. So not only do I not have the flashes but I think it's helped my mood as well. When I did have hot flashes, I bought one of those towels that athletes use that stay cool and I would wet it and keep it by the bedside for when I woke up. I hope you can find the right formula to make things better. Don't just accept status quo, keep trying different things until you get something that works.
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