Arimidex - Coping with the SE's
Comments
-
Hi Dobie,
You've sure been thru a lot, but I think your positive attitude will get you thru this too. I'm one of the ones who really doesn't have any side effects from the arimidex. Yes, the occasional muscle fatigue and I'll probably not do any mountain climbing, but I've never done that anyway! So.....here's hoping you too can be spared any SE's.0 -
Notself - can you get more information on the "research" your doc spoke of? I'd LOVE to learn more. My docs are saying "no research beyond 5 years on the AI's" - that's why the Big trial going on now for women with 4 years on an AI: two arms of that trial, one to continue for another 5 years, the other to do the 5 years consisting of 9 months ON, and 3 months OFF the AI.
Would LOVE to read more research - if you have access to it...thanks
0 -
Ugh! I have developed trigger thumb in my right hand after eight months on arimidex. Fortunately, I am left handed. I had surgery for trigger thumb in my left hand five years ago so I know it is fixable. Time for me to see the orthopedist. Could be worse.
0 -
I love that we have this thread as a home base for those of us taking an AI.
That having been said, I need to confess that my body does not like prunes. Oh. "Dried plums," they're called these days. Anyway, I am presently visiting an elderly relative who lives in a retirement home. The meals here -- 3 a day, 7 days a week -- are excellent. And, imagine my joy when I discovered that stewed prunes were among the standard "fruit" selections for breakfast.
Yesterday, I spooned up 6 or 7 of them. I think I ate 6. They were sweet, juicy, quite nice actually.
My GI tract does not like them at all. It has been grumbling and growling and feeling ouchy ever since. I now have an aversion to stewed prunes... perhaps all prunes. I'll have to test that. Even the thought of spooning up more prunes at tomorrow's breakfast (I slept in and skipped breakfast today) makes me flinch.
Is this a learned taste?
otter
0 -
Otter, Perhaps start gradually adding one a week so your body gets used to the fiber. I'd give it a break for several days to let your gut settle down.
0 -
Otter...I dunno but I have loved prunes since I was a kid! Never ate them a lot ...never thot of it but now I am concerned about the sugar content.
0 -
Did I get this right? The prunes are professed to help prevent osteoporosis? I was interested in how they do that since they really don't have a lot of calcium in them. I did a little poking around the Internet and found that they contain oxalates and other chemicals which may help calcium absorption. Also increasing fiber is thought to decrease BC risk. I agree with Wren44. You have to increase fiber gradually in order to avoid uncomfortable intestinal symptoms. That is what I tell my pregnant ladies to do. (I'm a midwife).
Thanks for the kind welcome Spunkyboobster and Mostlysew. Hope your pain is better today, SpunkyB. We have all been through a lot.
Now what's with the raisins soaked in booze?0 -
Tina, my total cholesterol went up. I don't need cholesterol-lowering meds yet because my HDL is high, raising the total.
Sunflowers, I have been taking the slow niacin for about 6 months now, but haven't had a glucose test. I will ask my PCP in August when I see him.
Okay for the prunes, I have been able to choke down five a day when I eat each one with a small bite of homemade, low fat chocolate cake. It kills the taste and I can handle the texture that way. I will try the stewed ones after we complete our move. We've been packing boxes for what seems like forever!0 -
Looked up the golden raisins in gin thing too. Old folk remedy for arthritis. Has to do with anti-inflammatory chemistry in raisins and juniper berries in gin. Hey, if it's good enough fo Dr. Oz , it's good enough for me. And the glucocosomin/ condroitin doesn't seem to be working quite as well for my knees as it use to.
0 -
I'll have to try this-tried glucosamine & chondroitin a few years ago. Made absolutely no difference to my bone pain.
0 -
Ok, I am seriously considering this raisins in gin thing. . . . Any input on how many and how often?
I just started the arimidex adventure so am probably a bit early for SEs - but had to ask if anyone is dealing with edgy emotions / moods . . . . And HOW? It could be my recent thrust into menopause . . . . And not arimidex, I recognize that. I am just looking for any feedback on how to deal, not take it out on those closest to me . . . . How to stay positive.
Any feedback is so appreciated.
Kelleyod0 -
SunflowersMA,
I don't have any research, just a conversation with my oncologist. Quite frankly I would have to see the research results before I would continue this stuff.
0 -
Marie - I also had a grade 1 tumour and have had horrific side effects from the AI to the point of it affecting my sight creating a cloudiness to my vision. That was it for me-two weeks ago I stopped taking Aromasine my sight is better, energy is back, no more pains in my ribs, upper arm muscle or lower back, or ringing in my ears.
June will be my 3rd year on AI's and it has been hell on my body and my family. For along time I felt guilty and afraid to stop the AI's. The side effects of suppressing my estrogen have been horrific for me. I can no longer live under the influence of the drug. Even though I had to take numerous "time outs" from the drug, including a schedule of every other day, the side effects were relentless and debilitating for me.
My husband said it changes me into another person- a person he doesn't know-or wants to know. As I come off of this drug, I can see my personality coming back-the scary thing is I did not even know the drug had change me into a different and very undesirable person!
I swim a mile every other day and completing that very simple task was becoming excruciating. My arms muscles felt like they were on fire. Sometimes I had to pull over my car and take a nap on the way home. Now, I cruise through my workout and have plenty of energy left over to go grocery shopping. I hope to compete again and can't wait for my conditioning to reach that point.
Your right about no one telling me that grade 1 is probably not a worrisome problem. But, quietly, my radiologist told me I would around a long time, but the one person who told me I would be fine was the oncology nurse navigator who has 15 year of oncology experience. She told me I had a good little tumor and not to worry. In addition, when I ask my oncologist if my type of diagnosis/tumor moved around allot he quietly shook his head NO and then said you are going to be fine.
I originally had osteopenia but my last bone density showed improvement in my bone density-Yahoo, Yippie Hippie Skippy. In addition to my swimming, I started lifting weight to strengthen my stroke. Hopefully, the swimming combined with weight lifting has helped increase my bone mass.
I also refused to take any bone strengthening medication. I do not take calcium or D unless it is the winter. I supplement calcium through my organic diet which has cheese, yogurt and chocolate milk (used for recovery after swimming). Since, I am in the sun 5-6 hours a day, I do not take vitamin D in the summer.
Your post are very informative to all of us who wonder "what if". Swimming a mile tomorrow and looking forward to the swim
AMP
0 -
AMP, so good to hear you've decided to quit the AI - nearly three years was surely far more than enough for someone like you. Not all breast cancer is the kind that's going to eventually kill someone. Some people have a cancer that requires aggressive treatment - other don't and you're one of those.
Throughout the more than 8 years I've been posting on this forum, I've taken long breaks away but I've noticed that I tend to drift back and participate in the posts a bit more every year around the time I get my yearly mammogram - then I eventually drift away for another while. I come back because I think it's very important that others know that people with small, low grade breast cancers don't generally need the same degree of treatment required for aggressive cancer. Without hearing stories like mine, reading most posts and responses to questions and concerns on forums like this gives the impression that one would be foolish to even consider saying no to anything.
Enjoy your swim tomorrow. I wish I had the stamina to be physically active like you but I've never been someone who's into sports and such - always have been a sit and read or shop kind of person and now at age 57, I doubt that's going to change. So, swim a little for me too, AMP!
0 -
Hi Kelleyod,
here is the recipe originally from RUTHBRU:
„I don't have arthritis, but here is a home-cure both my mom and aunt swore by: buy white raisins and a bottle of gin. Soak the raisins in the gin in the fridge for two weeks. Then eat six of the raisins every day. It supposedly gives a natural cortisone effect. My mom's fingers were starting to get those arthritis bumps on them & after she did this for awhile they went away. (And if it didn't wore, I suppose one could dump the raisins, drink the gin, and feel better anyway )."
Some ladies and I too we are practising 12 raisins a day!
Greetings!
Usha
0 -
The research I've done on line suggests that the raisin/ gin remedy does not need refrigeration since the gin acts as a preservative. Sources suggest covering the jar with cheese cloth to allow the gin to evaporate for a week then eat 9 a day. BTW. It has to be gin, (not vodka or tequila) since it is the anti inflammatory properties in th juniper berries used to make gin which are believed to contribute to its effectiveness. This is just folk medicine, no real research to back it up, but honestly, much "real medicine" has no more evidence base than this anyway. Probably can't hurt... and Usha- Do the gin soaked raisins help you?
MarieKelly- you sound like my kinda gal. I was exactly of your mind when I was dx 5 years ago. And with osteopenia, I also refused to go on fosomax. Current practices are now supporting our decision by advising that osteopenia does NOT need to be treated. Some doctors still seem to push it. Must have samples cluttering their cupboards. Despite my cancer reoccurrence, I stand by my decision not to do endocrine therapy 5 years ago. It was the best decision based on what I knew at the time. Now that I know that my particular brand of the beast is a bit more persistent, I will change my tactic and give this medication a try. My poor DH and DD practically begged me. It is right that I should try this now. But if like AMP, the SEs are seriously effecting QOL then I will reconsider my game plan. But someone else may need to make different choices than you, me or AMP. Each one of us is unique as is our situations. It is good for all to hear what all the options are. Thanks MarieKelly for your perspective. I am glad you have remained cancer free. AMP- your decisiion to stop AI makes total sense. Best wishes for your increased QOL.0 -
Hi, all, catching up on the news of my favorite ladies.
I stopped anastrozole 1 1/2 weeks ago after starting it two months ago. I have noticed a huge change in pain level and stamina, and since I have chronic pain I was surprised at the difference, because my pain levels vary so much day to day. I am scheduled to start letrozole in several more days, to see if this one is kinder to my body.
My MO told me that taking an AI is the most important part of my treatment, to prevent recurrence, so I hope I can find a way to make it work for me. I am 59, and if I were older I think I might be more willing to think about not taking anything.
I also found that my mood improved when I quit, but I don't know if it was the AI or if I was depressed about how lousy I felt. Anyway, I'm enjoying these two weeks.
Have a great week, ladies!!!
0 -
Where's the research that says a good drink with vodka helps with all the pain? B/C I swear sometimes that's what I'd really like! This is all a lot to handle, and adding the pain along with it sometimes is too much. I'm just beat.
0 -
barbyjean...I am 68 and my MO told me the same thing...he is adamant that I take Arimidex for 5 years. I am in my 4th month with no SE's so far...I am debating about the whole 5 years tho as I have a very low % of ER+
I AM concerned about heart problems and bone loss caused by Arimidex. Guess I will just watch for signs. My RO told me that rads can also cause heart problems in later years! It's a case of damned if ya do, damned if ya don't.
0 -
Exercise religiously to keep your heart strong and also to keep your bones strong, and to keep your mood elevated and to keep you looking good (which will also elevate your mood), and the diminish the aches and pains, and to keep your weight under control, and to reduce your risk of recurrence. Really, truly, exercise IS the magic bullet. (That and maybe a shot of vodka....although I'd prefer a tall gin and tonic with both limes and green olives
) 0 -
ruthbru...it's really difficult to exercise when you have 3 herniated and bulging discs in the neck.
Even walking on the treadmill causes excruciating pain and the concrete sidewalk is a no go. Swimming would be best but with no wheels that is limiting as well. I haven't done much of anything in years...I know I will pay the price. I do try to keep my weight steady but I need to lose at least 10 lbs.
The G & T sounds great tho...lime is good for me!
0 -
Happy hour! Gin & tonics all around. Have to try the lime & olive thing. Those who prefer vodka, go right ahead. Just raise your glass. Here's to us. Cheers!
0 -
Well I have discovered that not all prunes are alike. I bought another bag, but this time got the Sunmaid prunes instead of the Sunsweet ones and the Sunmaid brand is much more palatable. The Sunsweet ones are like chewing a big piece of nasty-tasting rubber. I can much more easily tolerate the Sunmaid brand. Who knew?
0 -
The things we learn
! I still remember my old grandpa slugging down his morning glass of prune juice (he lived to an active and healthy age 93, so he must have been doing something right!).Cheers to all of us! We are thinking and researching and working to make the best decisions for our own health, which is a way more than most people do. Another round for the A-Team!
0 -
Sapphire and tonic after the first medical oncologist visit was just the thing. (No plan yet, waiting for Oncotype and additional HER report. Onco was fine, but should have saved the $50 co-pay since I knew the tests weren't in. Sigh.)
0 -
I wonder how prune juice would taste with a shot of vodka or (preferably!) gin?
Actually, I LOVE prune juice....and stewed prunes....and prunes straight out of the bag! 0 -
reposted with permission of Dunes:
An hour ago dunesleeper wrote:
Here is something for you all to pass around to the various groups you belong to:Please join us on Monday, June 25th or Tuesday, June 26th for an important free webinar: Take Back Our Genes: Ending the Patent on Breast Cancer Genes to learn about how one company's control of the "breast cancer genes" creates barriers to research and testing that could endanger your health and compromise the healthcare of hundreds of thousands of women.
In 2009, Breast Cancer Action signed on as a plaintiff in the lawsuit challenging Myriad Genetics' patents on our genes. The lawsuit, filed by the American Civil Liberties Union (ACLU) and the Public Patent Foundation, challenges the legality of the patents that grant Myriad Genetics control over the BRCA1 and BRCA2 (the "breast cancer") genes.
Myriad's monopoly prevents anyone else from so much as examining the genes, and creates barriers to scientific research and medical care relating to breast and ovarian cancer. It also limits women's ability to get second opinions when they receive ambiguous test results, which happens disproportionately to women from ethnic minorities, including African-Americans, Hispanics and Asian-Americans.
Breast Cancer Action is the only national breast cancer organization named as a plaintiff in the lawsuit. We are able to take this stand because we have no conflicts of interest: we don't take money from companies that profit from or contribute to cancer, and because our work demands that patients must always come before profits.
The webinar will be presented by BCAction's executive director Karuna Jaggar, Sandra Park, Staff Attorney for the Women's Rights Project at the ACLU and Runi Limary, breast cancer survivor and plaintiff. Topics we'll cover include:
Why BCAction opposes gene patenting and why the issue is important for women
The impact of gene patenting on underserved communities
The current status of the ACLU's lawsuit challenging the legality of patents on human genes
Real stories of women's experiences with gene patenting
How you can get involvedJoin us on Monday June 25th 3pm PDT/6pm EDT or Tuesday June 26th 10am PDT/1pm EDT for this free one-hour webinar to hear the real story about the effects of gene patents on women's health and to join us in opposing corporate control over our bodies, our genes, and our health.
Register for Monday June 25th 3pm Pacific Daylight Time/6pm Eastern Daylight Time: www3.gotomeeting.com/register/...
Register for Tuesday June 26th 10am Pacific Daylight Time/1pm Eastern Daylight Time: www3.gotomeeting.com/register/...
For your convenience, we are offering the webinar at two different times. Click on the links above to register for the time and day that works for you.
Sincerely,
Sahru Keiser
BCAction Program Associate of Education and Mobilization0 -
This needs to be posted on it's own thread I think.
0 -
olives and limes? Ruthbru, you crazy gal. 0
-
Geez, I am getting thirsty!!!
0
