Doing Well on Aromatase Inhibitors (AIs)
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I'm on this team now. I was switched from Tamoxifen to Anastrozole 3 weeks ago. I have had no noticeable SE except my fingernails seem brittle (maybe this ridiculous weather?!?) And I'm have very strange dreams. Not scary or drama filled just strange. Like last night I swear we were at an American Idol performance and I saw a family member I had not talked to in 2 years. They spoke to my DD and look at me and said "I don't have time for you".....WTH?!?! Things like that...
How long should I look for SR or am I good now??? I had no SE from Tamoxifen except I got extreme cold chills instead of hot flashes. I'm still having those occasionally but I also only have half of my thyroid and have always been on the cold side.
Have a beautiful day ladies!
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Welcome, Vargadoll! that is so funny about the dreams. I was just telling my husband I've been dreaming a lot lately and remembering them! It has slowed down but the first month on Anastozal was like that. I'm working on my 2nd month now.
Heading to an integrative oncologist today to see is acupuncture might help with some of my hip pain. I feel like I'm adjusting to the "new me" pretty well but I really need to be able to walk better. So hopefully she can make some recommendations and help me out. I am more than happy to make adjustments as needed in order to keep a recurrence at bay.
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CeliaC ... Thank you for your understanding comments. I will see how far Edgewood, KY is from our home in North Alabama. Maybe we can celebrate our five year victory!
2FUN ...That log your exercise site is very encouraging.
Our treadmill is fried beyond repair. I think we are going the elliptical route this time.
Puffin2014 ....Such sage wisdom you shared that while walking your leg density was good but since you were not using your arms, density there had lessened. I don't use my arms while on the treadmill because I fear failing. Thus I think the elliptical is the best piece of equipment. Thank you so very much!
Coach Vicky
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Vargadoll & Smwusaf - I've been taking Anastrozole every other day going on 6 weeks (every day starting 4/14). I too have had weird dreams, 3x woke myself up yelling or screaming something.
One dream, more nightmare, was finding a chair tipped over & empty, screaming "oh my god" my aunt was dead (has been for years). 2nd was screaming at ex husband "get out of my house!" (been out 22 yrs!). 3rd one was a wolf or coyote coming at me and I was screaming at it to scare it away.
Can I file this under - this too shall pass?
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I'm so sorry others are experiencing the dreams to! The flip side is I'm glad I'm not alone!! I am also still trying to find the "new me"....I've lost myself somewhere along this journey. I feel when there are no more changes maybe I will reappear!
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Vargadoll... I understand about "l lost myself somewhere ...".
I have posted these words before from the song Tell Your Heart to Beat Again.
I re-read them (and sing them) when I feel the lost.
Tell your heart to beat again
Close your eyes and breathe it in
Let the shadows fall away
Step into the light of grace
Yesterday's a closing door
You don't live there anymore
Say goodbye to where you've been
And tell your heart to beat againI hope you will find these words helpful. There is no going back after a breast cancer diagnosis. Fortunately, we can move forward wiser, healthier, and living.
Best wishes,
Vicky
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Vickie-you are so right! Thank you for the beautiful post! We had a few rought years. 2 unexpected deaths, moving from our home of 17 years to a new one that was better for us and I resigned from my job of 15 years. I (we) were just getting back to the swing of living when we got the BC diagnosis!
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Along that line, here is one of my favorite poems, it's by Leonard Cohen:
"Ring the bells that still can ring
Forget your perfect offering
There is a crack in everything
That's how the light gets in."0 -
My integration Dr. recommended a book which I just started and I highly recommend it to everyone. So far it is very informative and encouraging.
Anti-Cancer, A New Way of Life by David Servan-Schreiber, MD, PhD
He had cancer and this is his research and journey "to be a part of the tail on the right side of the bell curve when it comes to statistics" (his words, but I'm taking them on as my mantra now.
).Happy Spring everyone, stay strong.
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Started Anastrozole on 3/1, MO had me take it every other day for 6 weeks. I've started daily on 4/13. We're snowbirds, NY to FL, so my first refill in FL pharmacy they told me its a different manufacturer. I haven't picked it up yet but Geeze Louise, it was Teva, no idea now what it will be. I had mild hot flashes, odd dreams, but otherwise no SE I can put my finger on - but I'm just starting this 5 year journey.
I'm just venting... I hope I get nothing more than what I've had. I've tried not to focus on taking something until 2023... because I take allergy meds daily forever so it shouldn't bother me, but it kinda does.
Hope you're all having a good day.
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I, too, was having trigger finger as a side effect of AI. It kept getting worse on Aromasin for me. I make my living using a computer, so it was really becoming an issue. After switching to Letrozole the trigger finger went away completely (it did take over a month or so.) The other joint pain continues, and I agree that exercise has helped. I started Pilates Reformer for the first time during treatment. I think it really helps my joints because it exercises every one of them each class ut with gentle resistance (I also do a private session once a week to target specific issues for me- mostly stretching and building my surgery arm and muscles to add support for knee joints). If I can do it 2-3 times per week I feel better. If I can't get to class, I will do yoga at home instead which also helps.
Vicky- I went to Boston for a second opinion (I am in KY but similarly have one major Dr in the region for BC and everyone tends to agree with each other.) I instantly clicked with my MO in Boston and have been traveling up there for every appointment and treatment ever since. Having an MO that you really trust makes a huge difference for sure- so glad you found that!
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Hey All,
Some of us girls on the Tamoxifen thread have been working on a survey for curiosity's sake. Started out mainly to see where everyone was at with side effects. There will be no emails collected, no names, all anonymous. If you have any thoughts on adding to the questionnaire send me a message and I can add it. So far 9 people have responded and once you are done you will be able to view the results.
Thanks in advance.Cheryl
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CindyNY - venting is not only allowed by encouraged. Walgreens worked with me when I said I wanted Teva only. I have switched to Femora since then and have had fewer SE's but we certainly do respond differently to the AI's.
I've found it helpful to think of my cancer as a chronic disease which is currently under control. At my age, I take other drugs on a daily basis to keep me healthy and femora is just part of that arsenal. I've actually been able to decrease my thyroid medicine since BC.
I haven't done a lot with my diet but I really have upped my exercise and pay attention to hydrating.
From the weather reports, sounds like maybe you went back to NY a little early this year. I'm off to play golf in my shirt sleeves here in Arizona.
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Taco1946- Thankfully, weatherwise, I'm in FL thru 5/9! If I were staying here longer I think I'd have to figure out how to get the Teva mfg med, or go thru Eagle for the brand name. When I get back in NY it will be Teva. So in the mean (warm) time, I'll just have to roll with it!
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meg2016 Glad you found an MO that you click with. It really does make such a difference. I feel safe now. I remain grateful to my first MO ... he did everything by the book to cure me.
smwusaf I like that quote. I do the statistics in DH's business.
CindyNY You have less than 5 years to go! That is how I must see this drug. X years, XXX days to go. As others have shared, stretch, stretch, stretch ... I do before I get out of bed.
Vicky
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Yes, statistics are information, not condemnation.
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Saw my MO yesterday - when he walked into the exam room, he said, “You look fantastic! What are you doing here?” Nice to hear. He had the results of my DexaScan and chest and knee x-rays (ordered because I complained about a chronic cough and pain in my left knee). All is fine. He’ll send me for another DexaScan next year as I do have osteopenia.
So the cough and knee pain? I told him three months ago that I thought is was SEs from the anastrozole. He begged to differ, saying I had been on the med since July and it wouldn’t just show up now. Really? All SEs appear immediately? So with the x-rays showing nothing, guess I was right!
I’ve been taking glucosamine chondroitin, which seems to be helping with my knee (even though studies say it does no good). I need to get a soft brace to it so it doesn’t bother me in my fitness class (squats are a bit tough). And last Saturday night I danced a wee bit too much and felt it in my knee!
MJ
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Tappermom38, stick to your guns about SE’s. Anastrozole takes a while to do it’s job...starving estrogen. It is a slow acting medication. It makes sense that the longer we are on it more SE’s will show up as it builds up in our bodies and depletes our body of estrogen. I find that several friends that were on it had to come off of it at the year to year and a half point because the SE’s were so bad they severely altered their quality of life. It drives me crazy when MO’s say that it’s not a SE of AI’s. It’s almost like they need to defend the drug.
Is there anyone out there who is doing fine on AI’s?
Barbara
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I took it for 5 years and did fine. Remember that most of the people who do well, naturally aren't posting about that fact. They are just out living their lives. Of the people I know personally in my social circle (unfortunately way too many I know have dealt with BC), NONE of them had unbearable SEs. Although ladies on Tamoxifin seem to have more difficulties.
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Tappermom-have you tried taking curcumin supplements for your knees?
Bella- I’m on femara/letrozole and doing quite well. Hot flashes, joint pain in my left pointer finger & thumb when I wake up in the morning, and some short term memory issues. All are bearable and far better than the SEs I had on tamoxifen.
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Tappermom ... Your wrote: "He begged to differ, saying I had been on the med since July and it wouldn't just show up now. Really? All SEs appear immediately?"
When someone says that to me, I respond...
"So, when you were on Arimidex, when did your side effects start?"
I started this line when a Nurse Navigator at my Treatment Center told me the 3 pounds I was swelling after a chemo infusion "was just 3 pounds." My response ... "so when you took chemo, how did you deal with the 3 pounds of swelling?" Had the diuretic Rx called in for pick up that afternoon and she NEVER questioned a side effect again.
I really get po'd when anyone tells me that I am not experiencing something. I think I do well on Arimidex but when I say it is causing something I don't want a debate. It is my body. This is one of the reasons I like my new Oncologist so much. He discusses my side effects and does not challenge them.
Coach Vicky
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love that response coach vicky. definitely keeping that in mind.
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I too have blessed with a MO who listens and helps me consider my options. Recently I have had a staph infection which has been hard to get under control and she told me to stop and see if that helped. Makes sense that the femora is drying up the little vaginal secretions I have. Until this flare-up I have been very positive about the shift from arimedex to femora. I attribute my joint pain more to my age than my BC. I've upped my exercise and that has really helped my knees.
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coachvicky - I love that response! I'll have to remember it if I run across anyone needing an attitude adjustment.
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I learned a lot from an older posting by Ton Lee in the Triple Positive Forum.
Here is the link:
https://community.breastcancer.org/forum/6/topics/...
It is worth the read! She goes over all the things she wished she knew BEFORE treatment.
Coach Vicky
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I have been taking Anastrozole for 5 weeks now. I have had no SE. It was a little disheartening to read that SE will appear the longer you are on AI's. I have actually lost 5 pounds and for the first time in over a year feel more like "me". (Whatever that is!) When I was switched from Tamoxifen to Anastrozole I was devastated! My whole world has been turned upside down since the BC diagnosis (12/23/2016). I started the Tamoxifen in March 2017 and was under the assumption that I would take it for 5 years then switch to a Anastrozole. To have my body forced into menopause early made me so angry! Last oncologist I had blood work sinceI had not had a period since starting Tamoxifen. ...yep..post menopausal! I was not ready for another change and what could potentially come with it! I had few SE with Tamoxifen. I was forgetful, tired and hungry all the time. At first I thought the Anastrozole had caused a loss of appetite but then I realized that I now have a normal appetite! I'm very active (walk an average of 7-10 miles a day) and lift 106 pounds several times a day. I truly believe that being so active keeps the SE at bay!
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“ It was a little disheartening to read that SE will appear the longer you are on AI's.”
Vargadoll, you may read that, but that doesn’t make it true for everyone. Please remember that women who aren’t having problems are probably not on these forums.
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Actually, my MO said the opposite. He said that if you're going to get SEs they show up quickly. Who the heck knows for sure? Love your response Vicky! I'm going to use that one.
Met with internist and he prescribed Gabapentin for my hand and feet pain which may also be due to osteo arthritis. He prefes these over ibuprofen which I was taking fairly regularly for muscle aches. I haven't tried them yet as I hesitate taking more meds. But, he's not a doc that over prescribes. It's a mild dosage and if taken at night can also help you sleep. My SEs are manageable as compared to others. So I just keep on truckin' and exercising. He said keeping moving is extremely important.
Also, he totally agrees about name brand vs generic in causing some SEs for a number of meds. I've been taking name brand Arimidex since last May. I pay out of pocket but for me it's worth it. I honestly don't know if that's why I'm doing relatively well. But, there are definitely some days when I am more sore than others. I say ouch with every step Ad I walk down my stairs.Exercise really helps. The good news is I'm off my blood pressure pills. Yeah! Get rid of one med and get another.
Love and hugs to all!
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Butterfly- that's exactly what I thought. If I don't' have any SE after 5 weeks surely I won't have any! I do think being so active helps keep the SE to a minimum. My LE bothers me more than my medication. Congratulations on dropping the BP medication! I am not a fan of taking to much medication either.
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Vargadoll, that’s great that you were able to come off of your BP medication. My MO had me stop for a week because after 10 days my BP shot up which is very unusual for me. I have never had high blood pressure before. My BP has dropped back to my normal after being off Anastrozole.
My MO wants me to go to my PCP to get evaluated for BP medication and go back on Anastrazole. I am not used to taking these meds so this is new terrritory for me. I do want to take an AI because I want to throw everything I can at stopping a recurrence. Should I go back on Anastrazole with BP medication or should I try another AI?
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