Arimidex
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I get a yearly bone density scan (DEXA), and after 2 1/2 years on Arimidex, my bone density has remained in the normal range; and because I exercise like crazy and get enough calcium; my bone density actually had INCREASED when I was in this summer. I second Jo, try it with an open mind. You can always try something different if you do have bad SE.....but you are risking your LIFE if you don't give it a chance!
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My mantra for almost ten years now, is "you gotta do what you gotta do"
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TN Golfer, I too held onto the bottle awhile before taking it, and once I started didn't tell anyone as I didn't want to be asked about if I were experiencing any SE as I didn't want over think it. I'm on my second month. First month, great. Now in my second month, finding it stiff and achy going from sitting to standing, getting out of car, and open and closing fingers. I work out daily and thought I wouldn't have these problems. Finding if I don't work out I'm stiffer. At yesterday's visit with the onc, I mentioned the joint stiffness and the onc suggested taking an aleve at night, and taking arimidex with the ca and vit D. Onc said that the stiffness is less with a higher Vit D level, mine is low. Onc, also suggested I go off it for one or two weeks and then go back on, as she as had success with that approach. Has anyone had success with going off than back on? I'm not ready to go off it for the one week suggested right now as I wanted to wait until it effected my daily living however I am finding I am doing less around the house. As I am active, I am thinking I can live with the stiffness as there are worse SE out there but am curious as to how much worse it will get or if this is the worse.
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Jo,
You win!! I will try it. I had thought about natural alternatives, but I am going to be a good little "do bee" and try the Arimidex. If it is not tolerable, I can always try something else or try the supplements. I am (and never have been) a pill popper. I would have to have a headache for 2 days before I took an excedrin. I also can't take pain med's. I took 1/2 percocet in the hospital after the Bilat Mx and I was loopy for 2 days!! I also don't do well with anesthesia; have "delayed emergence"...took me 4 hours to wake from two of the surgeries. Finally pleaded with the anesthesiologist the morning of the emer surgery to repair a hematoma (after the Bilat Mx) and they finally listened and gave me something else. So with my history of metabolizing med's like an 8 year old, I guess I'm just a little anxious.
All your posts had some wisdom. I am just scared....but my estrogen receptor status was positive at 95% so I believe I will have to "suck it up".....I usually go kicking and screaming, but I will try and comply. I will try taking the Arimidex in the morning with the multi-vitamin and the calcium and VitD! Can I start Monday???
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Hello again
PJ12345 - thanks for your response ... I'm copying the FDA response and notification to orthopedic health care professionals and patients re the issues with Fosamax. I mentioned in my last post that I have been on Fosamax since 1998 when I was treated with high dose prednisone for sarcoidosis (lung infection). I had a full dexa scan before I started Arimidex in October 2009, which was totally normal.
Oral Bisphosphonates: Ongoing Safety Review of Atypical Subtrochanteric Femur Fractures
FDA notified healthcare professionals and patients that at this point, the data that FDA has reviewed have not shown a clear connection between bisphosphonate use and a risk of atypical subtrochanteric femur fractures. FDA is working with outside experts, including members of the recently convened American Society of Bone and Mineral Research Subtrochanteric Femoral Fracture Task Force, to gather more information and evaluate the issue further.
FDA recommends that healthcare professionals follow the recommendations in the drug label when prescribing oral bisphosphonates.
Patients should continue taking oral bisphosphonates unless told by their healthcare professional to stop. Patients should talk to their healthcare professional if they develop new hip or thigh pain or have any concerns with their medications. END of notice.
Re taking Arimidex - I totally agree with JO-5 - from reports I've read and in speaking with other women, the majority of women have no major SE. I was in a clinical trial when Tamoxifin was first being tested. To know that we are now years down the road and Arimidex and similar meds are now available sustains my hopes. I also believe that in the medical community today you do need to be your own advocate. I do my best to make sure my providers stay in the communication loop so that my pulmonologist is current with my oncologist and my ophthalmologist, and gastrologist (hmmm, didn't realize how many "gists" have become a part of my life) along with my neurosurgen and family doc know what each of them are doing. I definitely do best with a provider who is willing to take the time to answer my questions and listen to my concerns. Another lesson I've learned on my bc journey (and actually with many other aspects of my life) is that this is NOT about making right or wrong decisions ... this is about making choices ... some choices may be better than other choices, but that's what they are ... choices. And for me, I prefer to make informed choices.
For folk surveying when to take Arimidex ... I take mine in the a.m. before breakast with other meds and vitamins.
One last ask .... I've seen varying doses of calcium with D .... has anyone found a recommended dose?
Sorry for all the babble .... my thanks to each of you for you willingness to share your experiences ... feels great to be with women who speak the same language.
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chapstickmom,
Hey how about a challenge....I'll try if you will....
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Hi I have been taking arimidex for 3 years 3months. I did not have se's right away..took over 2 years. My onc says sometimes se's are gradual. At this point he doesn't want to switch me to anything else...he feels it is best for me to stay on this especially because of the length I have been on. I feel like an old lady most of the days...but it sure beats having cancer!!!
I have had difficulty paying for it also. right now I am receiving help from Health Well Foundation. I was hoping it was going to go generic this year...but I see not until 2012!!! How terrible. Well, so many companies of all kind make money and good money off of cancer people.
I have had acid reflux since I did chemo. I take generic zantac at night and it really isn't helping I need to go back to the gastro dr. but I just haven't done so.
This is a good thread. Good luck TN with the arimidex.
hugs and prayers,
Candie
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Hi Judy,
It's hard to get a straight answer about Calcium, Vitamin D intake, because there are a lot of variables to consider. Calcium doses depend on your age, weight, lifestyle and Vitamin D depends on age and the amount of winter in your area and keeping the two in balance.
Over 50 and taking Arimidex I was told 1,500 Calcium and 1,000 Vitamin D (I live in Toronto, so we usually have a long cold winter, short days and wear warm coats, etc). Someone who lived in e.g.Mexico would not require as much Vitamin D.
The upper tolerance level for Vitamin D is 2,000 IUs a day. I have heard of people taking larger doses but only for a short time, when their Vitamin D levels are extremely low.
Too much calcium without enough Vitamin D - actually weakens your bones. And too much Vitamin D can cause stones.
A person with a body weight under 120 lbs - might have to take more calcium. Reason being, they probably didn't have enough body weight to build healthy bones. However, if that same person was very athletic, they might not need to take more.
I asked my pharmacist for advice, which I have followed. After more than 4 years, my bone density and Vitamin D levels remain okay.
Also, don't forget to deduct your food intake of Calcium and Vitamin D.
For Arimidex, I take mine in the morning before I eat.
Whatever you do, it's probably a good idea to share it with your PCP / Onco - in case they have a better recommendation.
edited for errors
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Candle1971,
Jo-5 who follows this thread has had similar problems with gastric reflux. You and she should compare notes.
pam
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Hi TNgolfer and Chaptstickmom
There is light at the end of the tunnel even if you have side effects.
I have just completed 5 years on Arimidex. I had all the side effects - nausea and diarrhea in the first three months, followed by hot flashes and worsening pain in my bones and joints. My hair thinned, but only a little. My bone density went from borderline osteopenia to osteoporosis in the hip and spine during the first two years. I was prescribed Fosamax but after doing some research and listening to my pharmacist's criticisms of the drug I was afraid to take it and opted for Vitamin D, 2000 units a day plus calcium. The bone and joint pain made me feel like a cripple; I couldn't get out of a chair without help; I had pains in my feet, my wrists, my arms; my shoulders and my back. I awoke most mornings with a headache. It would take me two hours to get ready for work each day. But, guess what! The pain, for me at least, was temporary. Only two weeks after stopping the drug I feel amazing. In fact after two days my joint pains had lessened. I can walk and exercise again, I have absolutely no pain in my bones or joints, my headaches have disappeared, my mood has lifted, I no longer feel nauseous and the pounds are coming off. I am 20 years younger. For a better prognosis I would take it again.
Something of interest: my latest DEXA scan taken 2 months ago while still on the Arimidex showed a 3% INCREASE in bone density. I put this down to the vitamin D.
Hope this helps anyone who is ambivalent about starting on Arimidex. Take it month by month and know that the bad effects are not always permanent.
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Molly52, thanks for all the info about calcium and vit D ... all you've written makes good sense. I'm in Pennsylvania so share some of your winter weather ... especially this year! I'm also fair skinned and have been avoiding the sun for years ... I've wondered if the discovery of sunblock has actually been a factor in lowering our levels. Thanks again for your help. Much appreciated.
Marigold, great to hear how your SE's have so quickly subsided. Congrats on completing 5 years!
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Dunno if anyone heard of the research done with vit d and cancer. They had a thing on good morning america. Showed a BC tumor and Colon Cancer tumor that they injected with vit d and it killed all the cancer cells and the tumor disentegrated. We wonder why cancer has become so rampant, think about it?? Global warming, less summers, what the heck, we are all so depleted of vit d !! My onc said that they are putting everyone who comes in on 100MG of vit d since the new research.
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Good info and love your ID, frankenboob!
pam
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I agree with Jo-5. Everyone is different when it comes to medications. I have been on this med for apporx. 5 months (only 4 years and 7 months left to go).
I really did not have SE until the 3rd month....then pow it hit me like a ton of bricks.....but I stuck it out and now the SE are decreasing significantly. I still have them but I can live with it.
Thanks for all the information about Vit D....I have my next appointment on the 1st of April (go figure). I will have to ask about it.
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I am still on the fence. As I only have an increased risk of BC due to , atypical ductal hyperplasia, but never had the BC itself I really don't think I want to be de-feminized from Arimidex when chances are 70% that I will never get BC.
The problem is some of the side effects - vaginal atrophy and osteoporosis -are permanent.
By the way, testing showed I had severe Vitamin D deficiency. My score was only 17. The doctor told me the most important thing is to get my D up to 60 and keep it there. I am taking prescription Vitamin D and feel great since I started that.
Thanks again to everyone for their suggestions.
Can't believe this is the best the pharmaceutical industry can come up with !
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Jo, I am nearing my 5 year mark - am starting to feel proud of myself for getting through (almost).
Sunflowers,The 2,000 IUs upper tolerance came from a government website. That's interesting about the trend for higher doses, it seems like Vitamin D has become a miracle drug. About 10 years ago, there was some research being done with mega doses of Vitamin D as a cure for MS. Now I believe Vitamin D is recommended for pregnant women to reduce the risk of MS.
I notice there is a risk of overdoing Vitamin D because it is a fat soluable vitamin that can build up in the body. This build up could include : Nausea, vomiting, poor appetite, constipation, weakness, weight loss, confusion, heart rhythm problems, deposits of calcium and phosphate in soft tissues.
For safety - higher doses probably require medical supervision.
Below is a small exerpt from CBC News on Vitamin D
"To be on the safe side, higher doses would be taken under medical supervision.The U.S.-based Institute of Medicine of the National Academies has set 2,000 IU of vitamin D as the daily maximum tolerable amount. Health Canada warns exceeding this limit could lead to an overdose that can cause kidney stones as well as damage to the heart, lungs and blood vessels."
Read more: http://www.cbc.ca/health/story/2008/05/16/f-health-vitamin-d.html#ixzz0i1iDATB9
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Hi all,
I havent been on the website for awhile. I recently spoke with my doctor and she said that aremidedx is more important than chemo. I was was quite surprised to hear it. I do remember that the chemo stats were much lower than I imagned. I also enjoyed the web site article that someone posted on some recent research findings. My doctor said it may be moved from 5 to seven years.I didn't realize that the most critical time for reoccurence was in the first couple of years. I've been taking it for about a little over a year. There is some aching joints and fatigue but I wouldn't dream of not taking it. Good luck to you all. Love Birdsong
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I too was told Arimidex is more important to my case than chemo would have been (didn't do chemo). Statistically, in the case of IDC, the risk of recurrence goes up AFTER 5 years. Other types of BC have different recurrence risk periods but for us IDC girls we have to be vigilant way out in years, like forever. I expect by the time my 5 years are up the treatment time will be extended.
pam
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Hi everyoneSleepless in New Zealand and googling 'aromatase'.I found an interesting article on aromatase and grapeseed - link below. Having completed 5 years of Arimidex would it make sense to now take a grapeseed supplement?0
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When we crunched the numbers, chemo gave me a 20% risk reduction and arimidex a 40% risk reduction; so yes, for most estrogen positive women being able to take the anti-hormones is the most important thing they can do to prevent a reoccurance!
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Hello all,
I will chime in with what I have uncovered in research. For ER+ breast cancer, it is DEFINITELY the hormone therapy that is more effective than chemo. My particular stats showed a reduction in the risk recurrence of 18% and chemo would only reduce the reduction of recurrence by less than 1-2%. It is not that chemo isn't effective; it just isn't effective with breast cancer tumors that have fed off estrogen!
Also, research indicates greater chance of recurrence in the initial 3 year period.
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The study that indicated a increase in recurrence of IDC after five years was done before aromatase inhibitors were routinely given. The newer studies do not show an uptick in recurrence after five years.
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Thanks notself,
! Thats why we take them, ladies!!!!! 0 -
Hi Jo-5,
I do think some forms of BC are most likely to recur in the first few years, then the risk falls dramatically. Everything I've read, though, suggests that is not necessarily true for IDC. With IDC the risk of recurrence in the first 5 years is low, then rises as time goes by. I first read about this in my oncotype report but have seen it hinted at several times in print. I googled it and here is a short blip... the next to the last paragraph is most pertinent.
Wish it were not so!!!
"Patients often ask me, 'Now that I've survived my breast cancer, what is my future risk of a recurrence?' " says author Abenaa Brewster, an assistant professor at Houston's M.D. Anderson Cancer Center. "This is an answer we've had a hard time giving. They remain really terrified about their risk." FORUM: Patients, survivors, loved ones share adviceHEALTH BLOG: Digging into the latest cancer studiesON THE WEB: Details straight from the journal Brewster notes that her study didn't include women who relapsed before five years.Overall, 89% of breast cancer patients live at least five years, the American Cancer Society says. About 183,000 women are diagnosed with breast cancer each year, and about 40,000 die of it.In Brewster's study, all 2,838 patients had surgery to remove the original tumor, and some also had radiation. All women also took medication — such as several months of chemotherapy, five years of the pill tamoxifen or both — to prevent cancer from returning.Thanks to new drugs, women today may fare better than those in the study, who were treated between 1985 and 2001, says the cancer society's Len Lichtenfeld. Doctors now often prescribe aromatase inhibitors to postmenopausal women when they're diagnosed, Brewster says.Lichtenfeld says some of the study's findings were surprising.In the first five years, two types of tumors are less likely to relapse: those that are slow-growing and those whose growth is fueled by estrogen. Doctors don't yet fully understand how estrogen affects breast cancer or why, in the study, the two types of tumors recurred more often 10 to 15 years after diagnosis.It's possible that women whose tumors seemed less threatening were "undertreated" and could have benefited from additional therapy, says Joseph Baar, a breast cancer specialist at the Ireland Cancer Center in Cleveland. Baar notes that doctors have begun a large study to learn which women need the most intensive therapy and which might safely avoid the rigors of chemotherapy.Yahoo! Buzz Mixx0 -
I am trusting Arimidex to change the outlook. And at this moment I would even embrace a second 5 year run, although I hope it is not indicated. Crossing fingers and toes!
pam
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All my care has been at MD Anderson and here is what my radiologist said............ if there is a recurrence it is normally between two and two and a half years. I would assume he was referencing someone with a diagnosis similar to mine. Of course we all know of cases where this has not been the case but as my oncologist said.......... cancer is predictable in the fact that it is unpredictable.
Pat
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Just a thought, since statistics include everyone; people who take their doctors advice and recommended treatment courses AND those who don't; I'd think those of us who do actually what is recommended probably have a higher chance of non-reoccurance than what the statistics say.
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Good point. Arimidex has high levels of patients stopping the drug for months or switching back and forth between other aromatase inhibitors. I just don't think we have seen a gold standard study of recurrence rate curves beyond five years in relation to the use of aromatase inhibitors.
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what interesting times we live in.
Today, I did not take Arimidex for the first time in over 2 and half years. I need a break, I have an appointment next week with the onco and I'll discuss further my decision to take an Arimidex vacation or stop completely. the side effects have become overwhelming emotionally and physically. I have a demanding job and I'm finding myself unnaturally intolerant and impatient and so forth. I'm grateful for this job, our area has 19% unemployment right now and jobs have always have been too few. I choose not to live in fear of having cancer again.
we'll see how I feel in a few days.
take good care all of you
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Casaredonda, sorry you are having a difficult time but you know we will be here to support you in whatever your decision. It is so very individual and we each have to do what we feel is best for ourself.
That being said, I would like to make 2 comments.
1 - I find myself extremely intolerant of many things but that predates BC - by a little over 20 years. I found myself to be short tempered with people who complain about the small stuff because I watched my DS struggle with living with cerebral palsy all while keeping a big smile and great outlook on life. Through several surgeries, much pain and discomfort. Being picked on and ridiculed in school but still going on to graduate high school and earn an associates degree. He is so enamored of girls but they don't give him the time of day because he doesn't quite walk straight. He loses himself in the fantasy world of Disney to assuage his emotional pain.
2 - Piggybacking on #1, I wonder if your intolerance and impatience is caused by the Arimidex or could it be caused because you have come through BC victorious and still have to live and work with people who 'sweat the small stuff'.
Again, I'm not faulting your decision as I'm sure you have not come to it easily. Please let us know what you decide after talking with your onco.
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