Arimidex
Comments
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I am having problems with my BP while on Arimidex, but I have had elevated pressure from time to time since starting meds 24 years ago. It may be from the stress from my onc and my long term disability carrier. The carrier is putting pressure on my onc to change me to another med so that I will be able to return to work. My onc told me that the Arimidex was the best med for my situation because of the family history and Oncotype DX score of 31. I committed to the drug and all of the side effects because I don't want cancer again, but now my onc is upset with me because I don't want to change meds and he is suggesting that I get a new onc. I am so disappointed in him. I didn't choose Arimidex and I would have accepted any drug that he felt would be the best for me. I don't plan to change to anything else unless the Arimidex causes another life threatening side effect. Has anyone else had a similiar experience with their onc and an insurance company? I would be highly upset if I changed meds and developed a recurrence.
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Thanks for the reply, I recently changed onc doc, and one of the questions he asked me was about headaches, I told him yes but he didn't say a whole lot, should of probably asked more but he didn't seem concerned. And yes I probably do need to get my eyes checked, its the age thing my arms aren't long enough any more.
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Jo,
Thank you so much for the quick reply. You ladies are much better than the dr. ! I am meeting up today with a group of gals that gathered in the waiting area when we all went through RAD. They were there from day one and gave me the heads up on what I had in front of me.(I was of the mind that it would be a breeze) Wait till I tell them about all of you.
Teresa
diagnosed 4/7/2009 lumpectomy,partial mastectomy,30rads +7 boosts
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Well now I wonder if my arimidex is elevating my cholesterol, hdl/ldl/tri is over the top, I tryed to take zocor but had to quit because of the se, have completely changed diet, (which probably should of done anyway) and haven't had it checked again to see if its better. My next doc appointment isn't until next month. I also have the soreness in my hands especially in the morning, seems to go away once I move around tho.
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Hi everyone,
I popped on this board awhile back while I was still on Tamoxifen.
I had a total hysterectomy on August 3rd (my choice) and started Arimidex. So far, I've had some creaky bones but that's about it. When I wake up, I walk like a 90 yr old woman and then after I'm up for awhile I can move normally.
I had Phase II of my DIEP (reconstruction) a few days ago. So, I can't exercise till I get cleared from my plastic surgeon.
In my pre-surgery labs, checkup, my cholesterol was WAY up....like 50 points up. Has anyone else experienced this on Arimidex? not sure if that's it or if it's because we were on vacation for 2 weeks prior to my labs and we ate out EVERY meal. I ate whatever I wanted. Could my cholesterol really go up that fast?
thanks for any input! I'm off to catch up on this thread now!
Lisa0 -
Lisa.......... according to my primary care Dr.......yes it can be elevated after vacations due to the food most of us seem to eat then. Also, shellfish can cause this. Hope you had a great time on vacation.
Told everyone I would share any info I got from my dentist today to do with Fosamax................. in a nutshell.................... he does not like it..........does not like the problems it causes for some and the future problems one might have with root canals and the like. So of course that did not please me as he said sometimes they would not be able to do procedures that they may want to and have no choice but to extract a tooth. As upsetting as that would be to me I would be far more upset if my spine failed me.............guess it is all about choices and the lesser of the evils.He did say that he feels this drug is not as much of an issue as the yearly injections that so many are now getting instead.
Sorry not to have a better "report" to share on Fosamax.
Pat
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Pat and Jo,
Thanks so much for your input. It makes me feel better. Darn on the shellfish....I LOVE my shrimp and have eaten it a bit more than normal as I replace beef with fish!!! yikes!
I'm seeing my oncologist on Monday prior to my first Zometa infusion. I'm going to have her draw blood and check my cholesterol again. I've been eating pretty lowfat for 2 weeks. Hope it has helped!
I REALLY don't want to have a cholesterol issue on top of my thyroid issues (hypo) and breast cancer. I'm 46....not young, but not old. I don't want to be on a bunch of meds!!!
Thanks, again!
Lisa0 -
About cholesterol: My friend, not a B C patient, has had very high cholesterol levels and has not been able to tolerate statin drugs. Her nurse practioner suggested red yeast rice which has really turned her numbers around. She buys it at a health food store. If you consider it please do your own research as it is not without detractors and does require medical monitoring just like a RX drug for cholesterol. It is chemically close to lovastatin, I think and widely used in Chinese medicine. Also I don't know how it might affect a breast cancer patient.
Just a thought.
Pam
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Correction, Lisa, 46 is VERY young! Enjoy the rest of those 40's! They're long gone for me, but I have good memories and was fortunate not to have to battle bc during that decade.
The tendency for cholesterol to be high or low is most often hereditary. My mother, aged 87, has eaten a high fat diet with lots of fried foods and gravies made with roux her entire life and her cholesterol is in a healthy range. She's also very much overweight. I know people who eat a healthy diet and exercise regularly and still have to take a statin. Life often isn't fair to those of us who try to be healthy!
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Thanks, Carole!
but, I've NEVER had high cholesterol before. Within the last year, I've had 5 surgeries. Prior to each surgery I've had labs drawn, done the EKG thing, etc.
My 4th surgery was August 3rd. That was my hysterectomy. I started Arimidex the very next day.
My phase II reconstruction was last week, Sept 17th. I had labs drawn days before surgery and that was the FIRST time that I showed high cholesterol! So, a month and a 1/2 of arimidex, combined with some "vacation" eating and my cholesterol went up 50 points! yikes!
Anyway, I'm seeing my oncologist monday and I will ask for another blood draw. I've been eating very healthy since surgery.
ugh.
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I have been on Arimidex for 7 months now. In the beginning I had more frequent and harsher hot flashes but they never last very long. Right about the time I'm going, "Ooh, I'm so dang hot." it's just about gone! I am 58 years old, complete hysterectomy and oophrectomy in 2003, in menopause, first diagnosed with BC in 1998, second time in 2002, and my most recent dx is stage IV widespread metastatic breast cancer to the bone. I have tumors in my entire spine, pelvis, sternum, and ribs. Practically ALL of my pain is in my spine. However, I sometimes feel the pain in my sternum at the same time that I hurt in my spine and then I call that experience my little "pain sandwich". I take 500 mg hydrocodone 2x/day for the pain. I do not have joint pain. I have BONE pain and it is very different. I take my Arimidex in the early evening around 5:30 pm. I am also on Lexapro for depression but have been on that for over 4 years, pre-dx. I have interrupted sleep every night because of the dreams on the Lexapro and from the numbness I get when I roll onto either side. Unfortunately for me, I am a side-sleeper and my arms will go to sleep and the pain of that wakes me up. Other than all of this, I sleep good and I sleep often. I take naps almost every day and can sleep for up to 2 hours at each nap. I also take Zometa and the side effects for both Arimidex and Zometa is bone pain so I am destined to feel it between taking both of those drugs and having all of my numerous tumors. My last PET scan showed very low "activity" of my tumors so my Arimidex is working! I have one more daughter to marry off (she's 27) and 4 grandchildren to live for and I plan to be around for a really long time!!!!!!!!! May God Bless all of us!0
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HI Helen Counts,
You are an inspiration with your bravery and positive outlook. I think I should stop complaining!
Love and Hugs,
Pam
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Helen, you have a wonderful spirit. Healing thoughts to you. I've had numbness and tingling in my arms and hands since my BMX and am doing exercises for carpal tunnel. I've been on Arimidex for less than a week so the SEs haven't shown up yet except for minor hot flashes. I take Effexor, so it may be helpin
Good health to all.
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Carolehalston: I have carpal tunnel too. I've had it for years and it has been managable. Now...I can't get it under control. I am having EMG test done and possibly surgery ASAP. I hate going to bed at night because I know I am going to be in pain...meds don't seem to help (or the brace). I was given exercises that post CTS surgery patients use...but nothing else. What are you doing...
Thanks,
Chris
P.S. Helen...what a gift you are!
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Hi Helencounts. I love your attitude about your situation. I am striving to keep the same attitude about mine. I have gotten a lot of inspiration, comfort, and knowledge from the women who post here. Thanks to everyone and may God be with us all during our journey.
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helencounts, after reading your story I will never again complain when I get a headache! You are truly an inspiration! I have a question to anyone about Arimidex, possibly. When I went for the follow-up, I was told my Dexa scan showed an improvement over the one taken a year ago. WTH? I didn't do anything differently. I even stopped taking all meds during radiation. I was so afraid that radiation would deteriorate my bone density, not improve it. Is an improved bone density a SE of Arimidex to certain candidates? I did hear this morning on the news that green tea can improve bone density. What's going on? Did they get my tests mixed up with someone else's? I'm tempted to ditch the vitamins, calcium, and exercise and just take the Arimidex with green tea!0
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I have not heard that Arimidex improves bone density. Just the opposite, we all worry that it causes a loss of bone density, hence we are told to take Calcium with Vitamin D and consider Zometa if numbers go down. I know green tea is good but I thought it was due to killing cancer cells.
Whatever... this is a good thing! Isn't it? Can bone density numbers fluctuate?
Pam
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Thank you Pam for your kind words. I am humbled by the response I have gotten over posting here. I'm new to these cancer websites.
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Jo, thank you so much for saying that to me. You're the best too!
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Hey there Rose. Thanks for calling me an inspiration but all of YOU are the inspiration to me!
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You're the second Vashti I have ever known. I worked with another Vashti in 2003 and she was a sweetheart. Regarding your attitude, please just keep living your life like you have a "bucket list". Also, watch out for any signs of bone pain in your spine or hips and if you feel that, insist your onco gets you a PET scan. This stage IV snuck up on me and I'd hate it to happen to anyone else.
The NUMBER ONE place breast cancer will metastasize to is the BONE. Did you know that?
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For me the bone loss started at 18 months into Armidex..some say two years and some have no problems...
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About green tea: I use the decaffeinated variety. Much more expensive but I am jittery enough without caffeine these days! Anyway, I use one tea bag to about a litre of water. Makes a weak solution. I drink one cup warm in the AM, then the rest of it as iced tea, diluted even more, as the day goes by. Tastes great and I feel pro-active. BUT it turns my teeth a yellow-gold color! I mean really quickly. Anyone else experience this? Any suggestions?
Green tea - Green teeth? What to do?
Pam
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in regards to green tea....i try and try to like it but i don't LOL! so i take a green tea supplement LOL!
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I kind of know what I would like to do with my boss loss. I have ratcheted up my walks, now I have 6 exercises I do with small weights and resistance bands at home that help with osteopenia. I eat for my bones anyway and I will take any combination of vitamins that my oncology center passes out. I already take many to help with the foods I am already eating. I want to take a wait and see attitude for this next year. Hopefully my lifestyle changes will keep my t score in the same zone it is in now or even improve. I have 2 1/2 years left on Arimidex. If not, well that will be next year. Look for me out in the park walking in the winter rains!
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About the bone loss. I thought I was going to be lucky since I started on Arimidex with bones that were better than my age would have suggested. I am tall and not skinny! I eat good food and was somewhat walking but not lifting weights. I poo pooed that. WEll, I probably will look better by the time I get my next Dexa in a year's time. I consider the exercise stuff as important now as taking that little white pill in the a.m. Ugh.
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I'm not sure bone density itself fluctuates, but the results of bone density testing (DEXA scans) can fluctuate. It's not a very precise test. If all you've ever seen is the radiologist's typewritten report, ask for a copy of the printout from the DEXA machine (computer) some time. The test is really simple, but IMHO it's very subjective.
I had my first DEXA scan done in 2001, before I was menopausal. An over-reactive endocrinologist ordered it because, ... well, ... I'm not sure why he ordered it. I think it was because he said I was at high risk of making kidney stones and was probably losing calcium. The DEXA results were fabulous -- at 49, I had the bones of a 30-year-old.
He insisted on repeating the DEXA scan in 2004 (one year into menopause) because I was not on HRT and refused his urging that I start taking it. He made a point of noting in my medical record that I was "going against his medical advice" by declining HRT. He said, "I'm going to order another DEXA scan to prove to you that your bones are thinning!" Well, they weren't. The results were even better -- even higher density, compared to the young-woman standard -- than my results from 2001.
What was interesting was that he had a new tech doing the DEXA scans, and the guy was clueless. (This endo doc had his own equipment, so he ordered lots of imaging. Gee, I wonder why?) The tech did not turn my foot & leg far enough to position them properly. I asked for a copy of the scan results and looked it up on the web. The positioning was wrong, and led to over-estimation of bone density in my hip. Nevertheless, the endo doc said the technique was "adequate" and the results, paradoxically (his word), showed that I had gained bone density even though I had entered menopause. Yeah, right.
I wanted my local GYN to order a repeat DEXA 2 years after that, but he refused. He said that, because of variability, I needed to have my DEXA scans done at the same place each time. I declined, because I had stopped going to the pro-HRT endocrin doc (with my GP's okay), and I did not want to start up with him again.
I had my most recent DEXA done in July 2008, just as I started Arimidex. This time it was a different machine and a different tech at a different place (my cancer center). The tech used my left hip instead of my right hip... and the results were totally different. Instead of having unusually high bone density, I have mild osteopenia. Whether that bone loss is the result of 4 additional years of menopause or the difference in technique, I don't know.
I have read, but can't cite, reports saying that some women do not lose bone density while on AI's. That is especially true if they have high bone density in the first place and it stays high as they go through natural menopause. Most of us aren't that lucky, though.
BTW, I saw my BS this week for a routine mammogram and follow-up. I told her about my aches and pains, and said I was blaming it on Arimidex (but had no intention of stopping the drug). She said if someone has a tendency toward osteoarthritis and tendon & joint pain anyway, AI's can make it worse. She didn't deny that it happens--she was really sympathetic.
otter
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Helencounts
My real name isn't Vashti. This was a name that I had selected for my daughter and decided not to use it 24 years ago. I still like it and I told her she may have to name her 1st daughter Vashti
. I started Arimidex in August of 08 and the pain started soon after. I had a PET scan in Jan. 09 and it was okay. Thanks for the info.0 -
Well since looking in more often on the site and hearing most of the grils are on fish oil I now to have started taking it. Not sure how much to take tho, whats the recommended amount? Also since looking in more often, I realize that alot of the se's of arimidex are wide spread through all of us and we aren't alone.
Thanks girls
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ChrisMc, I'm sure there are many good fish oils on the market. The one I use is NutraSea...it is made from small fish only (sardines and anchovies) and has no soy additives ... in fact, hardly any additives. It comes in 2 different dosages -- either 1500 mg or 2300 mg per teaspoon. I switched to the 2300 when I started the Arimidex and I take 1 tsp every morning. Good luck with your decision making.
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