Doing Well on Aromatase Inhibitors (AIs)
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Good morning and welcome--I have been on letrozole for 2.5 years with minimal side effects--mild knee stiffness first thing in am relieved by moving around and sleep disturbances-can fall asleep but wake up 2 hours later and sometimes takes couple hours to fall back asleep-some tolerable vaginal dryness -use coconut oil -recommended by my onc as sexual lubricant and works fine..
what helped me was an attitude going into it of realizing and accepting that the medication is my best friend/chance as far as significantly decreasing my recurrence risk-up to 40/50 percent-that is huge and I am one who will have to say on more than 5 years--just had my 2 years dexascan and minimal bone density changes.
You have been thru so much to this point- please dont be afraid of side effects that may never materialize or effects that are easily managable--go into this next phase with a positive attitude. I put the pill bottle next to the coffee maker- take it in am and never give it another thought thruout the day--Kaylie
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msuka and cm2020 -
I'm not dismissing - just nervous about the potential side effects, especially the joint aches and bone density issue. As well as the potential impact on heart. The leading cause of death for breast cancer survivors is heart issues. So I'm not going blindly into this and researching like crazy so I can make an informed decision based on my MO's recommendation. But I like gathering anecdotal evidence from people who have ACTUAL experiences. Like you. So thank you for sharing that. I'm already 54 (almost 55) so already have menopause symptoms to deal with. I would still like some sort of relationship with my husband, which is in short supply these days because of those symptoms related to chemo. So I'm not anxious to make those any worse either.
Kris
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Kaylie -
Thanks for that positive take! Per my other response, I'm already experiencing significant vaginal dryness from menopause and now the chemo effects. I also use coconut oil, but it's helping less and less. I don't want to lose that part of my relationship with my husband, but the appear is basically gone at this point! Bone density and joint aches are also a concern - my biggest ones beyond the dryness issue. And insomnia - that will be a problem. I'll have to really see what makes the most sense based on the numbers.
Kris
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Chiming in here as another person doing just fine. My AI perhaps is the reason I have more stiffness, some joint challenges, and dry tissue, yes. I drink a lot of water and get one hour of exercise every day, and when I do that, I really feel okay. I am grateful that this medication can give me a good shot at reducing recurrence. There were more discomforts the first few months, and they really faded away. So, my body adjusted, and my brain just stopped complaining. In any case, I really don't think about it much, except if I sit too long, which makes me sort of 'freeze up' in knees and hips and back! Solvable by not sitting too much!
I had good news recently on bone density. 2018 was my baseline DEXAScan before starting AI that year, and since osteopenia was seen, I've been on a Zometa (Zoladex) infusion 2x/year. AI's often cause some bone loss. New DEXAScan last month shows improvement over the previous one in 2018. The plan is to continue my Zometa infusions twice yearly, and continue taking my AI. Both decisions get reevaluated at each infusion, when there's first a blood draw to check metabolic things, and so far, everything's just fine.
Zometa causes me to feel super tired the day after each infusion, so I have a low and slow day, but just one day like that. I'm just fine the day after that.
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I was taking Glucosamine straight 1500mg per day, but I have recently quit those. The pills are too big for me, and seemed I was having a slight GI issues after taking my morning supplements. (Multi vitamin and Vit C) I feel I'm doing better GI wise and I eat a little something when taking the other 2 vitamins. It's been about a month and my knees are stiffer but like many others, mostly in the morning. Once moving I am better. If I'm doing physical labor and have to be down on the floor, I wear knee pads and take my time getting back up. I miss my exercise class that stopped thanks to the virus.
I also have osteoporosis in my hip and osteopenia in my spine. It is too be determined what (if anything) will be added medication wise for me. My insurance will not cover Prolia.
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I just hate adding SO many medications. You take this one, you have this side effect, you have to add another and another. I already have knee stiffness. I already exercise daily. I did the Predict site that someone mentioned, and adding in AI only increases my life expectancy in ANY context by 5%. I'm just not sure that's worth quality of life, osteoporosis, pain, etc. Just talking out loud here. No judgement on anyone's decisions.
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wahooma87 - SEs. They are so variable. Some people do not experience anything, others experience a lot. Most are somewhere in the middle. Some find relief with supplements, others with something else, and some, not at all. You should get a baseline bone density scan, since AIs are known to affect bone density. I have been taking Arimidex for almost 1 year. What helps, seems to be posted just about anywhere. I do experience joint stiffness, one finger on left hand is prone to locking up. I am not do for another bone scan for a year or so, just hope the bones are ok. I am using brand name Arimidex rather than a generic, and I think the SEs are a little less than with generic. I think turmeric (as food, add black pepper), and turmeric supplements helpGlucasamine/chondroitin might be helping. Some people most about CBD (with/without THC), it did not seem to help me. Stay hydrated and active. I hope all goes well and that you do not experience SEs. Acupuncture seems to help as well. Recently I've added electrostim to it, which I think also helps. I read something about Yamamoto scalp acupuncture which was supposed to help with AI SEs but could not find anyone who practiced it. Cannot find the original article on AI/scalp acupuncture.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right.
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. 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.
6/18/2019 Noticed Swelling in R-arm, opposite side from where lymph nodes. Ultra sounds for clots, no clot. REferred back to DR who referred me to lymphatic therapist. 7/2/2019 lymphatic therapist recognized that there was something very wrong and sent me back to the DR.
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. Arimidex and Ibrance prescribed to shrink tumor prior to surgery, if needed.
10/2019 – Stopped Tamoxifen. Started Arimidex and Ibrance. Brand name Arimidex so far does not seem to have the SEs that generics did, but stiff/trigger finger on left middle finger returned.
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wahooma87, AI decrease the recurrence up to 50%. Without letrozole, my chance of recurrence is 20% but since I am taking the medication it is 10%. Yes, I am having SE and I am trying to figure out what supplements work. I am also worried if the pains, aches and body changes are part of cancer coming back or SE. But not all people who take AI have side effects and you may be one of them. Your MO will suggest you the AI and I believe you should give it a try. A doctor told me I am lucky to have a type of cancer that responds to AI.
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wahoomama - I was also very concerned about the AIs. However, decided I would rather give them a try in hopes of keeping the beast away. Had more SEs when I first started than now, but none were severely debilitating. I have been taking supplements to help with joint health for many years and believe these have helped to counteract joint issues some have. Everyone's body chemistry is different and some tolerate one AI better than another. Hopefully, your MO will be able to provide some good advice. There are quite a few "members" on this topic who are coping with AIs pretty well, as indicated in the topic's title. Sounds like you may have awhile to sort this out since your BMX is in August. Gentle hugs and healing thoughts.
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Celia, what supplements do you use for joint health? I have injured my knee and the orthopedist I saw this week told me to take Chondroitin and Glucosamine sulfate. He said it was tested in dogs and they improved within a month. I went to Cosco today but the I didn't like ingredients of supplements they had.
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My SE were bad the first few months. Now they're doable. As far as heart issues, I sought a cardiologist before I started the AI. I figured I had no problems and I wanted a baseline for future comparisons if something turned up. Best of luck to you.
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LilyWasHere - Will gather up supplement info for you and answer back tomorrow.
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Lilly -
Thanks - I ran myself through that Predict site and it actually only increases my non-recurrence rate by less than 5%. So that's why I'm questioning.
Celia - Thanks for sharing your experience. Lots to think about.
KRis
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Lilly - I take a lot of supplements currently, to help with chemo. I have gone through a naturopath on brands/ingredients, etc. to get the cleanest ones. I would recommend finding someone in your area and seeing them. It has really helped me mitigate the chemo side effects.
Kris
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Kris, I had 1% recurrence from the Predict website you are using while MO from Dana Farber told me I have 20% recurrence. I trust the doctor more than online data. Get the pros and cons from your doctor and then decide.
Thank you CeliaC. I guess would be a good idea to open a new topic with supplements info in case someone wants a reference in the future.
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Supplements Info - Following are joint health related supplements I take, including manufacturer: Omega Oil - Nordic Naturals Ultimate Omega Lemon Flavor / Natrol Vegetarian Glucosamine, Hyaluronic Acid & MSM. Disclaimer: I AM NOT A MEDICAL PROFESSIONAL and ONLY OFFER THESE AS SUGGESTIONS. PLEASE BE SURE TO CHECK WITH A MEDICAL PROFESSIONAL.
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I use the same fish oil
. I will check on glucosamine. 0 -
Wahoomama, for vaginal dryness try K-Y Liquibeads. Was recommended by my GYN a couple of years ago, I use it three times a week. I have had no worsening in vaginal lining since I started using it regularly. Available online and in all major pharmacies
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I quit Letrozole after 6 months because of a huge increase in cholesterol and joint/bone pain. I don't regret stopping, in fact I wish I never started, but I made the decision for my health based on my personal issues.
My sister is on Arimidex, and she has had no side effects after a year and several months. She is very happy staying on it.
Everyone is different and everyone must decide what is best for them, but there really are people who do well on AIs without issues.
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Lilly - No test yet. My insurance will not cover a PET. They have approved a CT of Chest, midsection and pelvic. It still has not been scheduled.
For those of you scare to take the AI, I do understand. I hated that stupid little pill. I finally realized that the reason was it was a daily reminder of something I really wanted to put behind me. Yes, I had some SEs. I ached, still do when I sit too long, I have dry skin - but I did before this, My hair is thinning, but it was before and runs in my family. I have neuropathy - and I hate it - I can not feel my toes yet they burn and hurt so bad some nights I can't sleep but this is from Taxol. I suffer from insomnia but I have since menopause. Is any of this caused by letrozole? Who knows? What I do know, that without that little orange pill, I would be more worried than ever about a reoccurrence. Think of this as another bullet in your arsenal. My SE's have gotten so much better. I hardly notice any when I hydrate and exercise. Stay the course. You can do this!!
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I am also doing well on Letrozole. Minimal SE
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Within a couple of weeks afterstarting Letrozole, I had awful vaginal dryness. Never had a problem with that before. It was uncomfortable to just sit. And I felt like I was getting a UTI but I wasn’t. My MO prescribed an Estring and within 2 weeks, everything was great again. I love the Estring.
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seawell- I was using Estring for about 2+ years. And I too loved it - easy, no mess, mark your calendar and change it every 3 months.
Long story: I had cervical bleeding after sex; then random times with a BM, and once after a 5 mile hike. GYN tested (swabbed) my cervix for about 7 different things, all negative, and pap was good too. GYN did cryotherapy on cervix; didn't stop it; GYN did touch up on spots that didn't seem to heal, didn't stop it. Prescribed some vaginal gel to heal it, didn't stop it. This went on for over a year. (I'm in FL 5-6 months; then NY)
I went back this year in May for pap, totally still a bleeding cervix. GYN says to remove the Estring. Bleeding has not returned. I go in October for a followup and expect to find my cervix is fine.
Mind you at times it was just a "pink tinge" on wiping. But once you see it you know it's not right.
My long long story, if you have any such issue, remove the Estring.
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CindyNY
Interesting....I wonder why the Estring was causing bleeding. Thanks for the tip...if I experience any bleeding whatsoever I’ll see my gynecologist and remove it promptly. I’ve been using it since February and will be starting my 3rd ring in a couple of weeks. I wonder if this is a common thing with Estring.
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seawell - various SE, but yes it lists unusual vaginal bleeding. Such as spotting, breakthrough bleeding, prolonged/recurrent bleeding.
I brought it up in the beginning. My GYN said I had such specific cervical bleeding she didn't view it as vaginal bleeding. Plus after BC I think she was worried about cervical cancer.
Hopefully you won't have any of it and get to enjoy the ease of Estring.
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Why would you get an Estring, which puts estradiol BACK in your system, which is what you are trying to avoid, because that's what reacts with the estrogen receptor? I'm so confused.
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Local applications for vaginal dryness are considered OK. My MO told me she would prescribe it if I ever needed it
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Anyone doing just Claritin for joint pain? Since I quit the glucosamine and my gi issues are better plus not having to swallow huge pills, giving that a try. They are tiny. I had some left over from my husbands chemo/neulasta regimen. I am definitely stiff as a board. Just lookin to feel more manageable/better.
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RE: vaginal dryness and Estradiol
wahoomama87 your question is great, and here's my story.....
I've used Estradiol/Estrace cream, inserted with an applicator, as prescribed, for quite a few years. My oncologist--at my request--has done extra research to look up studies to answer my concerns. His conclusion has been that when it's used as prescribed as a vaginal cream, it isn't shown to be systemically absorbed. Therefore, it's safe to use locally.
If I use it, I control urinary urgency and don't 'lose' drops of urine, I have perineal skin that doesn't break down, I have a vagina that works, and using it un-did vaginal "atrophy." So, I've chosen to use it. I have never tried the ring. I have chosen the cream, because I can use some of the measured dose in the perineal area, some in my vagina, and all of my tissue is comfortable, as a result. I'm super careful about my applicator-measuring for the dosage, because all research is connected to a specific dosage.
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