Life on aromasin
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thats a great idea!
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The 3 month marker did it for me with Aromasin. Ginger48 I think you and I are on the same time table. I was on Arimidex Feb-April and had way to many side effects. Switched to Aromasin in April and after two months I was doing cartwheels of joy with feeling normal! My Oncologist warned me, don't get too excited yet it takes awhile for the side effects of this drug to show up. Then bamo I woke up with terrible carpal tunnel, and slightly blurred vision now.
I took a month break from July 4th. till now. The Carpal Tunnel relieved itself by about 85% but my hands and fingers are so stiff and imobile in the morning they crackle. I NEVER had that before this drug. My Oncologist suggeted Tamoxifen next but I'm afraid since my Mother is on Coumadin for blood clots and Grandmother had a debilitating stroke and those are the rare side effects or slight risk side effects of Tamoxifen. I seem to always fall into the low risk percentage and am scared to try it. He then said try to go back on an "A" after the break like Arimidex again or try Femera. He doesn't want me stopping the anti-hormone drug, it makes him and I too nervous for reoccurence.
I can't live with not being able to move my hands and fingers, I work fulltime in an office at a pc all day. Has anyone else gotten better in time with Carpa Tunnel or did it only get worse. I don't want permanent nerve damage, that would not be good!
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Bogie, I wear braces at night and that has fixed the problem. Still have periodic tingling, but nothing that keeps me off the computer or prevents me from knitting. I got the braces at Walmart but they are probably in many other stores.
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Yes, Bogie it does seem like we are on the same schedule and I too am on a p.c. all day.
yorkiemom - what kind of braces? how did you know what to get? are they in the health and beauty aid area?
Ginger
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Ginger, they are produced by Mueller. They are the most heavy duty, i.e. padded, braces I could find. They are very comfortable and really protective. My hands rest on a firm pillow like substance. They were in the pharmacy section of Walmart, where there is a special section for braces. If you are confused about which one to buy just ask the pharmacist. They will know what works best for carpal tunnel. Good luck!
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thank you
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Hi all, my fingers have started swelling. They usually did that if I went for a couple mile walk but now I am waking up with it and it is not going away? Is this a side effect of the Aromasin?
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My hands haven't swelled per say, but my joints are larger. My rings had to be enlarged, and I do feel it is a side effect of the meds.
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thanks kira, my concern is how do you determine if it is lymphedema or just a s.e. of the aromasin?
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Aromasin does have a steroid component. I have been looking for signs of swelling bc of this as well, have not seen anything yet. I was on steroids a few years back for something else.....and I swelled up horribly after a few weeks.....so Im hyper aware of this SE for me.
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With me it's the knees and ankles --happens on and off. I'm trying to eat less carbs which helps with the water retention. Also I was told to drink more water. If your body needs water it will retain whatever it has (or so I've heard) in various places.
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I will try the water thanks, but I am so concerned about lymphedema as well. Only three nodes removed but I know you can get it with that.
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hapefulhealing, is the swelling on the BC side or both. The other thing is you would see swelling in the arm as well. If you want info on lympedema kira is the one who knows lots and lots about it. She has an active thread. Just type in her name, and you will see lots of info from her.
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The swelling is in the fingers of both hands. I am a bilateral with nodes on the left. The other thing with the steroidal component are all of you gaining weight? I thought I read that weight loss was a side effect of this med. I am counting on that! ha
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Hopefulhealing, my weight has pretty much been stable. I went down a few pounds at first but gained them back. Still trying to lose the ten I've been working on for years now.
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I have been on Aromasin now for 6 years and 3 months. I will continue on it as my body adjusted quite well after the first 12-18 months. I was put into menopause by chemotherapy during my first BC dx 12 years ago when I was 47. At that time I took Tamoxifen for just over a year, then Femara for 3 months and attempted Arimidex for 1 month, ultimately stopping all hormonals in 2003.
After my second BC dx in 2005 I was already well into menopause and had very few hot flashes by then. I started the Aromasin following my chemo in April 2006 and have continued it ever since. I initially had few symptoms at all until about the 6-9 month mark. From then til about the 18 month mark I experienced lots of joint inflammation, trigger fingers, tender painful hands and carpal tunnel symptoms. I did not seek any surgical consults since I was hoping things would get better and they did. After the 18 month point the acute pain, tenderness and swelling went away.
My hands are still a little stiff in the mornings (I also have lymphedema) but they no longer hurt at all and I am 90% functional with the fine motor activity of my fingers. I am on the computer constantly typing, I quilt and sew by machine, but I choose to no longer hand crochet or hand embroider.....more due to the lymphedema than anything else.
I know we are each so unique and there is a full spectrum of responses to medications, but for me Aromasin has turned out to be the most tolerable of all the hormonals I have tried. It was tough getting through those 6-9 months but at this point I feel my body has adjusted completely to the reduced estrogen.
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Thanks for sharing your experience LindaLou! Its super helpful to know that if we can hang in there in the beginning, itll eventually work out!
Wondering how long you plan to be on it? I thought 5 yrs was usually the most.
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Ginger, I think mine are the same as Yorkies. The Nuerologist told me I had the right kind. My wrist brace was from Walgreens, color blue about $29.
You can use the same brace on left or right hand it's interchangeable and comfy. only thing is my hands and fingers are sooo stiff at first a.m. But loosen up as the day goes on, yet still tight.0 -
Lindalou- You are an inspiration, thank you for the hope. it makes me want to tough this out in hopes my body adjusts. My biggest concern is carpel tunnel. I lifted a glass candle today at the store and it slid right out of my hand crashed and broke. I can tough it out with joint pain and hot flashes as long as i know there wont be permanent nerve damage with hands and fingers, how would you know?
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An hour ago Shayne wrote:
"Wondering how long you plan to be on it? I thought 5 yrs was usually the most."
Shayne, yes 5 years is typically the standard length of time for the hormonals. My second cancer was a very locally advanced Invasive Lobular with 23 positive nodes and because I was 94% ER positive, hormonals are my best bet for avoiding a recurrence. My onc plans to keep me on Aromasin until I am 10 years out from the second dx or until there are other reasons I should stop it sooner. Since I am now tolerating it so well I will continue taking it forever if it is keeping me NED!
A minute ago Bogie wrote:
" I can tough it out with joint pain and hot flashes as long as i know there wont be permanent nerve damage with hands and fingers, how would you know?"
Bogie, I know it is a concern. I think the issue with the hormonals is more an inflammatory process than doing nerve damage. I definitely have peripheral neuropathy in my feet as a result of having Taxane chemos for both my BC dx. I don't believe I have any nerve damage in my hands though. I have heard that the symptoms of joint stiffness and pain greatly improve once the patient stops taking the hormonals. Hopefully, that will be the case for you to!
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Kayb,
Thank you for the great explanation. I think I'll try going back on the Aromasin to see if it will work after a month break. I wear the brace at nite and exercise hands and fingers during the day. How long did you have it until it went away?0 -
LindaLou - Thank you so much for jumping in here. I am hopeful that with time, our bodies, my body, will adjust. I have been taking Aromasin for 3 mos. and find I am increasingly stiff, achey and in pain. I take various pain meds as needed and this helps a great deal. I am also taking supplements; hopefully these help too. I am determined to stick this medication out. I am 95% ER+. My kids need me. Generally with medication, our bodies do adjust although this is not always the case. You have definitely given me hope. My former MO also talked about potentially 10 yrs. on an AI. There is research looking into this now so, he felt that when I reached the 5 yr. point, there would be some good information out there to assist with decision making. I wish you the best with you own diagnosis and treatment. May God bless you!!
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I too have found swelling of hands and feet and water retention. I don't think it's the lymphedema as much as the Aromisin. But it comes and goes.
I'm also hearing permanent use of AI's. If you get one that you can live with!!
Hugs
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Linda Lou, thank you for posting what you did and I so needed to hear it this morning. I got up moving slowly, feeling stiff and in pain which is a daily occurrence. Today it made me feel very down and sad for myself because I am so far from the person I was physically, I was actually thinking is it worth it for this QOL. I too am 95% positive. Of course this is nothing after chemo and I try to remind myself about that and that I do not what another recurrence. Reading your post has made me feel better about continuing with hope that it will get better. God bless you!
Ginger
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do you guys have a trick for remembering to take your pill(s)?? Seems like i forget at least once a week.
guess i could set my phone alarm, but how annoying......
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Good Morning for me ladies--still LOL I was up earlier and went back to bed Oh my energylevel . But my morning started with a ohone call from my Drs. office making more app'tments and my dtr talking with them. And she said to buy ensure for me--my numbers are still all screwed up--I', like my Mom took that when she was in her 80's stop talking about me. This was not my onc.so I told her some of this I will take up with my onc. (aromasin) maybe that's some of it ???? Who knows anymore.
Shayne I take about 20 pils a day, 15 in the morning and I get them ready before and right next to wear I sleep is the container for them (next to my water) so I really can't forget them--tho I'd like to LOL so try something like that.
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Thanks so much for sharing about the braces. I'm going to give that a try. I only have pain in my right hand but it is severe.
kayb I was also encouraged to hear what your MO said about it can take 3 to 6 months to settle into a pattern.
I think I'm coming up on 3 months and my sleeping has improved maybe the benedyrl, melatonin and valerian root helps but earlier it didn't matter what I tried I wouldn't sleep more than two hours at a time. Though not where I'd like to be with that; it is much better. Also, I have noticed just this week, I am not having to hobble around as long when I wake up due to the pain in my feet. It's there but much more tolerable.
So I'm just hanging in there and waiting to see what's ahead. From all I'm hearing I'm concerned that switching may not be helpful.
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Just a note - I really have to watch my sodium intake some or my feet will swell to where it is difficult to walk. My ankles and legs will swell too. My kids were pretty alarmed once when they saw my feet all rounded up with no visible bones. That is most likely the Aromasin as it only happened before when I was pregnant. It also happens if I sit for too long which is going to be a problem when I return to work in the fall.
Okay - so I take my pill at night (I remember it as it is by my bedside light) just before sleeping. Generally, I am in a bad mood in the morning, irritable in the afternoon and then in better spirits in the evening. I am happiest at night, before I take my pill. This seems to be a daily pattern. I am wondering if it is just life, estrogen deprivation or the medication itself. Any thoughts?
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mybee333, I find I have to watch the sodium as well. It causes me to really swell up. I almost hate eating out now because I know I'll be miserable the next day.
I find I'm really grumpy in the morning as well. I sort of feel off, not sure how to describe it. I finally start to feel more myself about 2 in the afternoon. I also take the pill right before bed at night. It does seem to put me to sleep fine, but I have a feeling I'm not sleeping well even though I appear to be.
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My bottle of Aromasin says "take with food". Are you ladies taking it at bedtime have anything to eat w/ it? Or do any of you take a sleep aid, as well? I have to take ambien to sleep and I am scared to take aromasin with it. Don't want to get to sedated and not wake up! Any imput would be greatly appreciated. I AM going to make this AI work for me!
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