Arimidex - Coping with the SE's
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Psavast - heck I had to write down your name so I could respond to you!
I have pain that migrates. Typically it is the outside of my hips where you put pressure when you sleep on your side. Tonight it was my back. I can't sleep well without taking Percocet - I just toss and turn for hours on end. I experienced the same with Tamoxifen but it is not as bad with Arimidex for me anyways.
On another note - I saw that one SE is high blood pressure. My blood pressure has always been around 120/76 but now it is averaging 150/96 and I was just told by a urologist and an anesthesiologist (spelling?) that I have a heart murmur. Luckily I have an appointment with my onco and I will be asking him about these 2 SE's. He does already know about the high blood pressure and told me to see my GP but I don't really care for the guy. All of my blood pressure issues started a month after I got on the Arimidex. I didn't have this issue with Tamoxifen. I really don't want to go back to Tamoxifen! The good news is that I only have 3 more years of this stupid pill to take.
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Thanks Beeb. I agree too- glad there is a med that will be a weapon. SE are no picnic, but not so bad as chemo. I had 99 percent estrogen on my path- so happy there are options for this.
jancie- hope you feel better soon. I too have had hip pain there in the area where the joints are near hips on outside. My back hurt more last week. Hope your MD will help w/ your BP- take care of yourself.
So post menopausal women can also be on Tamoxifen? I didn't realize that? Is that usually only when SE are bad from the AI? Or after 5 yrs of AI? Just curious?
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LisaGH before AIs women where prescribed Tamoxifen. My onc prefers the AIs because she feels there are less SE especially less serious ones like blood clots, uterine cancer etc. although the AIs have osteoporosis issues. Granted some women as we can see have trouble with AIs so I have seen cases where they are put on Tamoxifen.0
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For blood pressure, here are some natural ways to reduce it:
1. of course you know I will mention exercise2. maintain your correct weight, even 10 pounds can make a big difference in your BP
3.eat a serving of oatmeal a day (also good to lower cholesterol and for colon health)
4. eat a serving of prunes a day (also good for the cholesterol, colon and bones)
5. 2-3 ounces of at least 70% cocoa dark chocolate (my favorite prescription!)
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SusanK has posted that bit of "data" on enough threads, I have reported the post on THIS thread as SPAM. I have also pm'd the Moderators asking to have it removed from the AI SE thread.
And if you want a GOOD LAUGH - go to the hyperlink to see the "source" of this repeated posting of SusanK. The Accidental Amazon or would you rather read what BCO has to say about this news!
It's GOOD news, BTW, another thread about it in this Forum. Effect of Tamoxifen seems to stay years after women have stopped their 5 years! GOOD NEWS.
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THIS IS POSTED ON BCO:
As long as we're allowing long posts - thought for those who don't go to BCO info pages:
What breastcancer.org says about this article…
Tamoxifen Legacy Lasts Long Term
Research has confirmed that tamoxifen (brand name: Nolvadex) reduces the risk of breast cancer coming back (recurrence) during the standard 5 years of treatment and that recurrence risk stays lower during the next 5 years AFTER tamoxifen treatment ends.
The results were published online July 29, 2011 in the journal Lancet.
After surgery and other treatments (chemotherapy, radiation therapy) women diagnosed with early-stage, hormone-receptor-positive breast cancer usually take 5 years of a hormonal therapy medicine to lower recurrence risk. When hormonal therapy is used this way it's called adjuvant hormonal therapy.
Of the adjuvant hormonal therapy choices, tamoxifen has been approved the longest and is approved to treat both premenopausal and postmenopausal women. The other main type of hormonal therapy medicines are the aromatase inhibitors, which are approved to treat only postmenopausal women.
This study analyzed the long-term outcomes of more than 21,000 premenopausal and postmenopausal women in 20 studies comparing tamoxifen to placebo (sugar pill) to treat breast cancer. Nearly 10,650 of the women were diagnosed with hormone-receptor-positive breast cancer, the type of breast cancer tamoxifen is expected to treat.
A study that combines and analyzes the results of many studies is called a meta-analysis. The Early Breast Cancer Trialists' Collaborative Group (EBCTCG) did this meta-analysis.
Results showed that in women diagnosed with hormone-receptor-positive breast cancer, recurrence risk was 30% lower overall over 15 years in women who got tamoxifen for 5 years compared to women who got placebo for 5 years:
- Recurrence risk was 47% lower during years 1-4 of treatment in women who got tamoxifen compared to women who got placebo.
- Recurrence risk was 32% lower during the last year of treatment and the first 4 years after treatment stopped (years 5-9) in women who got tamoxifen compared to women who got placebo.
These very positive results on the long-term benefits of adjuvant tamoxifen come from studies that began more than 15 years ago. Tamoxifen continues to be the recommended adjuvant hormonal therapy for PREmenopausal women diagnosed with hormone-receptor-positive, early-stage breast cancer. The aromatase inhibitors have become the recommended adjuvant hormonal therapy for POSTmenopausal women diagnosed with hormone-receptor-positive, early-stage breast cancer.
Aromatase inhibitors are preferred over tamoxifen for postmenopausal women because a number of studies have shown that postmenopausal women treated with an aromatase inhibitor have a slightly lower recurrence risk than women treated with tamoxifen.
Tamoxifen and the aromatase inhibitors work in different ways to lower recurrence risk. Tamoxifen blocks the effects of estrogen on breast cancer cells. Aromatase inhibitors lower the amount of estrogen in the body. The aromatase inhibitors are:
- Arimidex (chemical name: anastrozole)
- Aromasin (chemical name: exemestane)
- Femara (chemical name: letrozole)
While the aromatase inhibitors are preferred over tamoxifen for postmenopausal women diagnosed with early-stage, hormone-receptor-positive breast cancer, factors such as side effects and cost may still make tamoxifen a better choice for some women.
Hot flashes and night sweats -- called vasomotor symptoms -- are side effects of both tamoxifen and the aromatase inhibitors, though they're more common with tamoxifen. Joint pain is a more common side effect of the aromatase inhibitors. Both tamoxifen and the aromatase inhibitors can cause serious side effects. Treatment with either tamoxifen or an aromatase inhibitor can lead to dangerous blood clots in rare cases. This complication is more common with tamoxifen. Also, aromatase inhibitors can weaken bones and make women more likely to break a bone.
Tamoxifen, Arimidex, and Femara are available as generic medicines, so these may be less expensive than Aromasin (depending on your insurance coverage).
When choosing how to take an adjuvant hormonal therapy medicine, guidelines from The American Society of Clinical Oncology (ASCO) offer options for women and their doctors to consider:
- Take the same hormonal therapy for all 5 years (monotherapy).
- Take tamoxifen for 2 or 3 years and then switch to an aromatase inhibitor until hormonal therapy has been taken for a total of 5 years (sequential therapy).
- Take tamoxifen for 5 years if an aromatase inhibitor was started but had to be stopped before a full 5 years was completed, perhaps because of unacceptable side effects.
There is still a question about the value of continuing to take adjuvant hormonal therapy for more than 5 years. All the women in the meta-analysis took adjuvant hormonal therapy for 5 years. But other research results suggest that taking adjuvant hormonal for more than 5 years might make sense for some women.
ASCO guidelines recommend that most women take adjuvant hormonal therapy for a total of 5 years. Still, ASCO notes that some women may benefit from taking adjuvant hormonal therapy for 8 to 10 years (called extended adjuvant therapy). In these cases, ASCO recommends 5 years of tamoxifen followed by 3 to 5 years of an aromatase inhibitor.
If you're a postmenopausal woman who's been diagnosed with hormone-receptor-positive, early-stage breast cancer, keep two things in mind when you and your doctor are deciding on an adjuvant hormonal therapy plan:
- Every woman responds differently to treatment. What works for someone else may not work for you and what works for you may not work for someone else.
- Your treatment plan isn't written in stone. You can always switch medicines if another treatment has greater benefits and/or fewer side effects.
It's a good idea to ask your doctor about the differences in benefits and side effects between aromatase inhibitors and tamoxifen, as well as the pros and cons of monotherapy vs. sequential therapy. Together, you can decide on a treatment plan that's best for YOU.
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------THERE IS A HEN HOUSE PARTY in OMG THEY FOUND A CURE FOR STUPID. iT'S BEEN QUIET FOR AWHILE. VEGGEY HAS KEPT IT GOING
http://community.breastcancer.org/102/topic/765586?page=122#idx_3635
EVENTUALLY TRY AND READ FROM PAGE ONE, IT IS A COMEDY CLASSIC------WORTHY OF THE OLD SATURDAY NIGHT LIVE. MAKES FUN OF EVERYTHING. AROUND PAGE 40 SOMEONE CALLED US A BUNCH OF CACKLING HENS. tHAT WAS GOOD FOR ANOTHER 50 PAGES OF TOTAL NONSENSE-------YEAH.
PETERED OUT AFTER THE HUNDRED PAGE PARTY. PASS THIS ON TO WHOMEVER YOU WOULD THINK MIGHT ENJOY IT. AND GET YOUR SILVER HAT READY
sent this to people and threads did however get confused at times and may have had wrong namesin it------oh well it's them drugs LOL ------invite whomever you would like. I think I will make a knew silver hat. If things offended you , you will love this, everything is mocked just as Chevy chase and the original Saturday night live crew did it. All tongue in cheek
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Ruth, FYI, Maybe you already found this, a chocolate bar without soy. It is 86% coaco, it is Lindt. Pretty bitter, but you can eat is slowly with maybe a little agave necter....:)0
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Hi ladies I had a natural health doctor explain something to me and it was interesting... I told him my ONC said that Headaches aren't an SE of Arimidex... he said that in a way he is right.... that arimidex takes the estrogen out of your system but it is the lack of estrogen that could be causing the headache... that being said - if you take any AI - the headache would possibly still be there because it is taking away the estrogen in your system? hmm might as well stick out the one I'm on and hope the headache passes quickly???
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You need to give your body time (like several months) to adjust to its new normal.
Stage 1, I usually buy 90% and then eat with with my carmel flavored calcium chew....sometimes when I'm in a hurry and can't get to a store with good chocolate, I even buy the unsweetened baking chocolate at the grocery store. (You are not tempted to cheat and eat an extra piece or two when you do that!!!!)
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ruth, you always have good ideas
Gma, almost all of my SE's went away, within two weeks. I hope your system will get used to it and I think your headache will subside. Is it constant or coming and going and coming again?
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Stage1 mine is a constant back of the head pain... Onc told me to take a week off and call him next monday to tell him how I am doing... Well, its Weds night and my head feels much better... I will try again and see if I can hold on... My problem is I can't take anti inflammatories because of past ulcer issues - I tried them durning rads for pain and it messed up my stomach again.... If I could find a pain med that would keep me going, that would be awesome, but no luck so far...
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Ask your doctor for some massage therapy.
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Hi Grammie,
I had a tough start with arimidex including headaches and what I call spaciness - I felt really out of it after I took the pill. At first, I took it in the morning with Breakfast, but then the tone of the day was lousy since I felt flat and out of it. then I added an anti-inflammatory, which seemed to help but finally I switched to taking it at night ( I figured that way I could sleep through the worst of it) I still do that. I also had/have some insomnia, but I had that whether I took it day or night. I take half a sleeping pill when needed and I only have caffeine in the am.
All said and done, it took my body a few months to work through symptoms ( plus re-jiggering other medications) to manage side effects. Joint stiffness et. Is still here, but I am able to tune it out more.
Hang in there. Folks here on this thread really kept me going when I felt really down. I hope that things improve for you, but also remember that you can take a break and re-start or switch if things don't improve over the next few months.Best of luck!
Ok, now for the rant:
SusanK8,
If 93% of the women with ER + breast cancer did not have a recurrence with or without tamoxifen, do you really think this disease would be such a big deal? It's the cumulative risk where up to 1/3rd of us will have it come back around over time that makes this front page news and a serious health risk. I noticed that you did not post your stats. I certainly hope that you do NOT have breast cancer! However, please recognize that your post is dangerously misleading to those who do. I am all for taking it off thai sight. thank you Beebread for being so thorough in your explanation of the ugly facts about this disease!0 -
Amen!
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Stage I, I am looking at my chocolate wrapper right now. It is 'Lindt Excellence Supreme Dark 90% cocoa'. Like you said there is no soy; it DOES contain 'bourbon vanilla beans'......hmmmm, maybe that explains my attraction!
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beau,
thanks for trying to teach SusanK something, but I don't think you will 'get through' - whoever is posting, keeps posting those long, long "cut&paste' pieces from what I call "dubious sources" llike The Accidental Amazon - and then when the source is noted, the poster seems to remove the source from the next thread she/he posts the same thing on. It gets tiring, to see the same thig repeated on so many threads, which is why I reported the one of this thread as SPAM. I think the intention is to cast doubt on any of the medications so many of us rely on for our continued well being, under the "guise" of informing people.
Those long, long "cut&pastes" ususally appear fromt he same poster, after some GOOD NEWS is reported about something. Such as the Tamoxifen news highlighted by Breast Cancer.org.
But Beau, thanks for trying. I agree with you, those posts are dangerous, and misleading.
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Ruthbru
Meant to say to you - I found 100% unsweetend cacao, Ghirardelli "premium baking bar" in my local Health Food Co-op. You won't want to eat too much of this one
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hi beau, ruthbru, lago,
WELL SAID, I'M WITH YOU!
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What bugged me most was that she had posted in on a thread started by a STAGE III gal struggling with SEs. Stage III.......following her advice could actually KILL someone!
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Really interesting when I checked out the Accidental Amazon blog.
I was struck that this woman is whining about not having energy three years later. This is in sharp contrast to Everyminute who is running marathons with faster times than ever. Who do you think I want to hang with???
I don't do victimhood and the blog reeks of it.
So most of what is posted is from the point of view that "women are dupes of medical science and big pharma". I see a number of women who post anti-hormonal "information" who actually believe that most of us are dupes to go with "evidence-based medicine" vs a "natural remedy". As mentioned on another thread, I find this attitude highly insulting.
Anyway, I need to get to work. Wanted to weigh in, prior to starting my day and downing my arimidex and vitamins etc.
And prepare for my two day cycling tour this weekend. - Claire
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Not only was it posted on several threads, but once it was called to the attention of others the SOURCE of the "cut&paste" The Accidental Amazon it was then removed from other postings
Guess we weren't supposed to know the site - which is so whining, as Clarie said, assuming women can't think for themselves. Demeaning! I've started thinking many of the people posting all this stuff are very, VERY angry. Maybe they exercised, ate healthy foods, did everything they thought was "right" and still got breast cancer! Not unlikely. And they are so righteous about their "positions" they can't now avail themselves of the medical treatments which are saving our lives. I can't think of any other reason for the presistence, the obsession, with posting the same things over & over again.
It is clearly not being interested in anyone's well being. The information is dangerous, misleading. I appreciate the way women on this board do refute that kind of material. The Moderators also keep an eye out for the really outrageous stuff. I remember the "RANT" someone posted against chemotherapy ( thread was called "Don't DO It" ) all about how chemotherapy "kills" and no one should have it - the Moderators finally deleted the thread when women asked them to remove it. That poster even put an anti chemotherapy rant on the Triple Negative Forum. Dangerous, and mean spirited.
Glad THIS thread is back where it belongs! Thanks to all of you for keeping it a good place to learn about the SE's of AI's and how to remove them!
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I ate right, exercised, no family history, yadda yadda and I'm not angry. Actually I'm happy to be alive. Yes Chemotherapy kills. It's supposed to kill the cancer. AIs and Tamox starves cancer. Slower death maybe but still kills. I'm happy to have cancer killing options (aka treatment).
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Lago,
ME TOO!!! I give THANKS for Arimidex, and my experience of chemotherapy (A/C DD) was not as bad as I expectd it to be. We all know the effects re cumulative, and by the last one, I was REALLY exhaustd - and grateful to have the tools in the 'arsenal' to fight this disease.
You also aren't posting those "RANTS" against chemotherapy - and then when someone would post a "defense" of the treatment and how they valued being able to have it - those posters were called "chemo pushers" or, one of my favorites "bullying" for not accepting the opinion of the poster.
I am so gald the Forum has now been divided into two: I read the Complementary and Holistic Forum. I believe in a "holistic" approach, and that includes, when needed, chemotherapy. I also have enormous respect for my doctors, oncologists, nurses, and eveyone who has been so kind to me at Dana Farber. Can't imagine what doctors women who "RANT" against the "Medical Community" are seeing.
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SunflowersinMA Yup been called a chemopusher and worse. BTW where in MA. I'm from the south shore. You can't tell by my posts but I will never pahk my cah in hahvahd yahd. I also have lots of good idears and eat pizzer on occasion
I'm headed to the Cape next week to visit the 'rents.
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Valgirl, good for you on the vitamin d, I take 5,000ius daily, and am still on the 'low' side of 'normal'.
It's been now a year since I switched from Tamoxifen to Aromasin (after 3 1/2 years on Tamox) and just NOW I am severely achy all over. I even have 'tennis elbow', which I had years ago out of the blue (did nothing to encourage it, where years ago I keypunched daily to get that)...so I have to see an orthopedic doc. I'm bringing my bone scan and bone density (loss of bone density, and shows the degenerative disease in the feet along with neuropathy I can hardly walk at age 52?). Nothing seems to help the achiness. I'm not depressed, have no anxiety issues, so do not wish any kind of antidepressant (besides migraines do not respond well to them, been there-done that). Tamoxifen caused its own damage (permanently damaged retinas, increased uterine lining by 4x normal--biopsies normal). These are all pretty potent medications. We do make our choices when we take them. I know for myself, I was given sheets of s/e's from all the meds (chemo/rads/tamox/aromasin), and have gotten the rare side effects of some. Good luck to all, this is not an easy journey...we take it day-by-day. ~juli
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Wow, I came here to ask a simple question about arimidex (i was put on it yesterday). I read a couple pages and then jumped to the last ones so I could post. But... well... the Accidental Amazon is a good and valued friend of mine. It hurts to read this, you know? I have always found her to be a generous and caring person, intelligent and thoughtful. I have never, ever known her to want to mislead or hurt anyone. She has never once suggested to me that I didn't need chemo. She has been very supportive and open-minded as I've struggled to make decisions. Maybe you see a side of her that i don't. Anyway, I just wanted to put in a word for my friend.
For what it's worth, I go to Memorial Sloan-Kettering and my oncologists (all dozen of them!) have been very, very respectful of my questioning of Tamoxifen and now Amiridex. They also have supported my use of use of nontraditional treatments... including marijuana to help with the joint pain and sleep issues. MSKCC even has an integrative health center that provides acupuncture and massage as well as guidance from a nutritionalist.
But! The reason I came here! (if you are still reading), I would appreciate it if you could direct me to a thread or a previous post that could help me figure out whether or not it makes sense for me to go on Arimidex. (They are telling me that if I start, I should wait at least a month because a) I am still healing from the surgery and b) I need to get physical therapy for my shoulder.) I am in excellent health. 46 years old. I am BRCA2+. I just had my ovaries removed (Tamoxifen was doing a number on my uterus). I have struggled with D3 deficiency for five years -- it goes up when I'm taking a megadose and otherwise is just pitiful!.
I'm trying to figure out what my likelihood of recurrence or a new breast cancer is if I DON'T take an AI. (I forgot to ask my onco that yesterday when I saw her; we were more focused on comparing it to Tamoxifen.) I keep hearing things like 50% reduced risk but compared to what?!! 30%? 20%
Or, if you'd rather not share the info, that's okay, too. It just can take a while get to speak to an oncologist! Have a great Friday.
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Great group on here. Many thanks for the supportive folks here! I too am so thankful for arimidex. One day at a time! 0
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Hi,
I went to see my medical oncologist today and he wants me to do hormonal therapy. I am frightened because of the side effects. My tumor was only 4mm, grade 1 and stage 1, and I wonder if I should be doing it at all. Has anyone experience hair thinning from aromasin or armidex? Has anyone experienced weight gain from aromasin?
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