Arimidex - Coping with the SE's
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Wave - it is a prescription.
I am ER-/PR+, so maybe they consider me a lower risk so it is OK.
One of the beauties of BCO is hearing what other doctors are doing. It feeds the question list to our own doctors!
Thanks ladies, enjoy the day.
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Alas another area of great controversy- vaginal estrogen. Studies have indicated that there is little if any estrogen absorption from vaginal estrogens. Most physicians believe that it is safe to use even if you have had ER+ BC. Some physicians say no because they feel more comfortable playing it safe. I say it is a matter of risk vs benefit. If vaginal dryness is distressing and effecting QOL then it is worth whatever, if any risk there may be. I tell my patients to try OTC remedies first like lubricants or moisturizers like Replense. If that doesn't work then Rx estrogen. I have consulted my MDs for BC patients and most think it is fine like most of you are finding. If using Rx vaginal estrogen cream, you only need a very small small amount. It is messier but more control over amount. There are lots of estrogen receptors in that area. Just use a pea size amount on finger and gently apply to outer vagina and just inside. That usually does the trick. I have not had need to use it, yet. But patients have told me it is like magic.
Edited to add link:
http://www.breastcancer.org/treatment/hormonal/ask_expert/question_01.jsp0 -
you may want to have the levels of vitamin D cheked.
With me, when its between 60 to 80 nanograms per mililiter, the joint pain is very minimal.
My oncologist thinks its in my head, but hey, it works and there is so much info out there about vitamin D(google vitamin D council )
When pain was less, I was able to exersise more, and that makes me pain free right now.
Make shure it is D3 not D2.
D2 has side affects like joint pain.
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I really appreciate this forum and the wealth of information. I have been reading the posts and have learned a lot already. I have recently started on generic Arimidex and was very reluctant to start due to the potential side effects. So far I haven't felt any, but hope I can alleviate most of them by following the suggestions in this forum. I have a great admiration for all of you. As many of you have already said, this is something none of us wished on ourselves, but it is wonderful to have a community of people who understand and give support.0
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There is always hope....
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Valene_in_Idaho, Sorry you had to join us here, but glad you found us. I see you just joined today. You will find a very supportive community here. I see you are stage !V. There is a very active group of ladies in the stage 1V thread that would welcome you with open arms if interested.
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Thank you Kira. I might check out that group. For now I am feeling well and am mainly trying to convince myself that Arimidex is the right path for me as I don't like to take meds. However, I certainly do love the dark chocolate prescription some of you have talked about. I will make sure and add it to my regimen. It sounds like exercise is the best way to deal with any side-effects of Arimidex so will make sure I continue to walk every day.
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OH for sure walking is beneficial to ease joint pain and other SEs of Arimidex but how the heck can you walk with hip and shin pain? Seems like damned if ya do, damned if ya don't. I even tried limited treadmill but that was a disaster too. So as not to scare anyone just starting A, I had a lot of this pain before Arimidex!
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schatzi-the right shoes can make a difference in pain from walking.
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Oh I have the whole thing...insoles etc. Hasn't helped. The pain is there regardless, even when I sit. This too shall pass (I hope). I have good days and bad days. Just afraid Arimidex isn't going to help.
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Schatzi-so sorry you're having so much pain. I have no doubt if the folks behind Arimidex (i'm guessing mostly male) had to deal with the se's, they'd come up with a better alternative pdq.
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I believe that too...it's not unbearable and it comes and goes. Just that I hate to not be able to do what I want, when I want ya know? But heck I am 68 and have to slow down eventually, but I refuse to give up.
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Does anyone have pronounced vertical ridges on their fingernails since starting AI? I had them before starting Anastrozole, but they're much worse now. No pain, just odd.
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Just wanted to add that my Onco recommended "Creme de la Femme" for vaginal moisture and it's all natural, no glycerin, no hormones and fragrance free. She sold it at her office but I found it online too.
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Well ladies I've been following this thread for a while, but haven't posted much.
I started Arimidex in March last year, and at first things weren't too bad. Then I started getting a lot of pain in my knee. That gradually spread to a lot of my joints and I was taking calcium, magnesium, vit d, fish oil and glucosamine. In April this year I started to get very bad back pain that just didn't go away. My chiro was out of options and after 6 weeks told me I should visit my dr and ask for a bone scan, which I did. We were scared it was mets. The bone scan showed I had degenertative arthritis in both feet, ankles, knees, elbows, wrists, hands in my shoulder and particularly in my lower back. The bone scan I'd had done at dx did not show any of this.
So - went to the onc and showed him the results. He maintains this is most defenitely NOT from Arimidex. Humphhh - told him he should research the se's more. So he told me to stop taking Arimidex for 8 weeks and has given me a rx for Aromasin.
I've been off the Arimidex for 5 weeks now - and I feel like a new woman. While my back still aches - it's not as bad as it was and apart from still having some pain in one elbow - all other aches and pains have gone. My memory is back! I feel energised and alive. I love this so much, I really don't want to try the Aromasin, but don't really have a choice - I was strongly ER+.
I too have the pronounced ridges on my fingernails - and the new part down the bottom is smooth - so yes - pretty sure that's caused by the Arimidex too.
Oh- and I can finally sleep really well - of all the se's the insomnia was the hardest as I couldn't function at work properly.
So - after 14 months on Arimidex and it causing degenerative arthritis, I'm now off it. Please keep your fingers crossed that Aromasin is kinder to me. If it's the same, I'll try something else I guess, but at some point you have to wonder if the QOL is worth taking the risk to not take the meds.
Trish
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I think the vertical ridges have to do with no estrogen. I had a complete hyst 11 years ago and I've had them for several years. I remember my Mom having them also.
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Same for me...ridges I mean...had them since my hyst. too now that you mention it. Just never connected the dots. As for the Arimidex...it's a day by day thing. If it's not one pain, it's another. Will just hang in there until it's so bad that I have to take a rest from it. I am only into my 5th month.
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Welcome Trisha-glad you're feeling better off the Arimi, hope the Arom doesn't affect you the same way.
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Trisha-Ann,
My onc just switched me from Arimidex to Aromasin. What a difference! I knew I was in pain but I had no idea how much until the switch. It is a pleasure to move now. It has been like a fog has lifted from my brain and my anxiety is gone. I don't think that Aromosin is a better drug, just that switching has made all the difference.
My onc said that switching from one to another often stops SE's. The researchers don't know why because the side effects of both drugs are almost the same. I suggest to anyone who is having quality of life issues with the side effects, talk to you onc about switching. Perhaps if patients were switched frequently over the five years, some SE's could be avoided entirely.
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I finished rads 4 weeks ago and now will start Arimidex. I am sitting here with the bottle and thinking maybe tomorrow. I know I have to do it.
I was checked out by a top gyno at my cancer center for suspicious hyperplasia in uterus. Turned out OK. He gave me a prescrip for Estring which you put in your vagina and it lasts for a month providing some estrogen. He assured me there was negligible absorption into the blood stream.
So I will use the Estring when I get up the nerve to start the Arimidex. Wouldn't do the Estring until then.
I am thinking of taking the Arimiex in the AM to maybe ward off insominia?
Kathy
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Hi Kathy,
I do Arimidex in the AM because easier to remember. Aspirin just before bed as usually hurting from something. BTW - I started Arimidex and rads the same week because of the special study I was on. And I had to start by Day 28 post final chemo to adhere to the protocol.
I would say I have a few minor side effects, but nothing to write home about. I do long distance cycling to stay fit, and that hasn't changed. I have two super long rides (200 miles over 2 days) planned for the next two months.....one to Portland, and the other to Vancouver BC. Vancouver is on my list of places to see, and I have done most of the route on this side of the border. Just not all at once.
I sleep just fine. In fact, a lot of evenings I can't wait to hit the pillow.
I will say that I was worried to take the first pill after reading what could happen. But none of these things did. I want to mention this because a lot of us don't have anything major go wrong on this medication. And being a "high risk" patient, I want to cover the major items.
One more reminder. Once you do all the therapy, the three lifestyle items with highest correlation to a reduced risk of recurrence are:
- Exercise (at least 3-4 hours of walking at a moderate to brisk pace per week)
- Weight management (one reason I do all the endurance events....who wants to give up eating?)
- Aspirin (yes, breast cancer is on the list of things it helps)
Diet appears to be much less important. Again, assuming you are covering the basics.
Good luck. Things really do get better from here. - Claire
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Hi Claire...
How long have you been on Arimidex? I take mine in the morning also.
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chatsworthgirl - It's interesting how some docs are OK with minimal amounts of estrogen and others are not. Sorry my asking, but why do you need to wait to start the Estring until you start Arimidex?
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Hi Schatzi..... 2 years, 2 months on Arimidex. Really back on top of my game in all ways now. I think I scared off a friend of mine I just had lunch/coffee with. He had never seen me wound and really into my work. He now understands what I mean by being Type A.
However, I think I am redeemed as offered to help move the new secretary desk he just bought.
Biggest thing today here in Seattle is sunshine. Which is why all of us who can have spent time outside.
Back to rain/chilly temps tomorrow. Hoping for a dry weekend with good cycling. - Claire
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Hot, hot here and very dry. After threatening to put in a sprinkler system for years, this hot dry weather made it essential this week.
I see you are taking aspirin as well, as a daily routine. I am thinking something along those lines too for the constant pain. Every night I hope the next morning will be better because I had never had any pain like this in my legs before. I constantly hope.
Our TX are essentially the same...I had a lumpectomy, DD/AC (3) because I couldn't handle the 4th and 12 taxols followed by radiation and now Arimidex for 5 yrs.
Hope you have a dry weekend and happy cycling
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I had an article pop into my work email today that talks about recent research supporting the fact that adequate vitamin D levels will reduce joint pain while takings aromatase inhibitors. Here is link below.
http://www.medscape.com/viewarticle/766273?src=nl_topic0 -
Thanks for the link Dobie. Interesting article and a lot of good information on this site. I saw, but have not yet read, an article regarding soy. I can never seem to get a straight answer on whether soy is ok or a no-no.0
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Claire, You are really someone I want to emulate. You are an inspiration.
I am on top of most of the items you listed. I am 5'8" and I weigh 135 to 138 on average. I am in good physical condition. I do a lot of heavy gardening and am also walking and doing some biking and swimming in my pool which I will do more of now that it is summer.
I have usually had a good diet. Mostly organic foods - eggs, chicken, beef with no hormones or antibiotics. I even wore Earth Shoes in the Sixties. LOL Of course the irony is that my great diet didn't do me a fat lot of good because I got bc anyway!! But really, I do believe that all of this made me stronger and able to go through this crap with very few issues. Now I am hoping it will assist with my taking Arimidex.
You make me less fearful of starting and I will do so tomorrow morning. Thank you for giving me this much needed boost of confidence.
Tina I didn't want to start the Estring until I was on the Arimidex because if there is even a tiny amount that is absorbed through the vaginal tissue into the blood stream I figure the Arimidex would counter that? Just me being paranoid.
Kathy
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Claire: One question: What dosage of aspirin do you take nightly?
Kathy
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I normally do two regular aspirin. The dosage requred wasn't clear from the research. My first oncologist recommended one regular aspirin. But since I am usually hurting from some sort of exercise mishap, the normal amount I take is two.
Just got back from the wine bar with a Spain vs WA State taste off. WA State held its own, and we had yummy nibbles. The big lesson is that we worry far too much about possible effects of wine/sausage and not enough about celebrating life. Doing a cycling/winery tour with some of the peeps Monday next week.
Plus need to investigate WA State smoked clams/oysters as a starter to feasts to come. WOW!!
Also planning an elk/morel Bolognese for Friday evening dinner with a friend. Mmmmmmmmm.
A bit of melon and straight to bed. Wonderful evening. - Claire
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