For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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maggie-
I have contralateral breast pain too-it was there before the Arimidex and right after rad's and it it still there after stopping Arimidex-I, like you, started a few months ago; My mammo is scheduled August 7th-I do not think it is an SE of any treatment, it is something, but not that.
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My doc has me on the the AI vs Tamox because of the effacacy for post-menopausal women. I have concerns because of my bone loss, but my onco doc says there is some documentation out there that Aromisin has less bone loss than both Anastrazole, although like everything else with this disease and it's treatments there is conflicting data. I am going to try staying on it for a year and control bone loss with diet and exercise.
As I continue to read up on nutrition I am finding more and more that diet more than any other factor contributes to the onset of the disease and helps "cure" this disease more than any other factor.
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Claire_in_Seattle - my BC dx last fall saved my life in many ways. Had it not been for that, I would not have lost all this weight, or made it a priority to exercise every day no matter what.
I'm nowhere near the activity level you are, but considering that last year I was a committed couch potato, I am happy to say I'm doing 90 minute water aerobic workouts, riding my bike, and power walking.
My energy has increased a million percent, and my fibromyalgia pain has diminished considerably. I haven't felt this good in 20 years.
My MO told me that recent studies have shown that diet and exercise alone can reduce the risk of recurrence of ER+ BC by at least 23%. I'd say that was a good thing.
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Water aerobics, bike riding, and power walking? I think you're doing awesome! I have always said if it were possible for people people to feel like they would if they were eating right and exercising regularly for 24 hours, you wouldn't have to have diet pills or programs; People would just do it because you feel so much better.
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Just got back from a pedicure. What magazine did I read? "Fitness"!!! No way would I ever have picked that up in the past, because I knew I would never be one of those skinny weasel 20-something gym rats!
I've always said that medically, it's very difficult to do something just because "it's good for you."
There has to be some payoff....some benefit. That'w why there's such low compliance in some patients who take blood pressure medication. There's no immediate payoff - no immediate feeling better, like, say, taking a pain pill for pain.
The payoff from diet and exercise is definitely delayed gratification. It takes a lot of faith to believe that going out and moving my fat butt is going to make me feel better than laying in my recliner, snacking on chips, and reading a trashy novel.
I always whined when my doc told me to go out and move to make the pain from my fibromyalgia go away. I thought he was crazy. The few times I did it, I felt worse. Of course, that just confirmed my theory that the recliner, chips, and book were the best medicine!
But the BC dx got my attention like nothing else ever did before.
Now I am already stressing about the time I will be out of the pool after my exchange surgery. I don't want to lose any ground!!!
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vacationbound,
I'm not sure what you were responding to, but I don't think anybody said that at all. Surgical removal of reproductive organs certainly does reduce estrogen production in your body. I was just clarifying that on pathology reports, the % receptive for ER+ refers to the percentage of cancer cells with estrogen receptors, not the amount of estrogen your body produces.
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NKB,
Generally speaking, Tomoxiphen is used for those that are premenopausal and aromatase inhibitors for those that are post menopausal. My MO said she prescribes Anastrozole/Armindex because it has been in use the longest, so the most data is available about long term use.
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Nancy-
Your July 17th statement is a little confusing, I understand what an ER receptor measure is however the last part of your last statement:"It is based on the structure of those cells and is not affected by whether or how much estogen is available to those cells. "
The "It" you are referring to, ER staus, is directly affected by measurements of estrogen....so to calrify-
If you are ER+, your tumor cells respond to estrogen and thrive on it. By having an ooph, taking Tamoxifen and/or AI's, you are depriving the tumor cells of the estrogen they desire. Some estrogen will always be in your body, but there's less of it. Therefore there's less fuel for the cancer cells. When an estrogen molecule enters a cell and passes into the nucleus, it binds to its receptor. That causes the shape of the receptor to change. The estrogen-receptor complex binds to coactivator proteins. This causes nearby genes to become active. The active genes make molecules of messenger RNA. These guide the synthesis of specific proteins. The proteins can then influence cell behavior in different ways. How depends on the type of cell involved.
From the BCO website:
"It's also worth noting that some breast cancers that are hormone-receptor-positive can lose their receptors over time. The opposite is also true: hormone-receptor-negative cancers can gain receptors. If the breast cancer recurs in the future as advanced disease, doctors should order a repeat biopsy and retest the cancer for hormone receptors. If the cancer cells no longer have receptors, hormonal therapy is unlikely to help treat the cancer. If the cells have gained hormone receptors, however, then hormonal therapy may be helpful. "
It's the same concept as antiangiogenesis: tumors need a blood supply in order to thrive, and when the blood supply is diminished, they do not thrive as well as they would with a large blood supply.
And what Mina Bissell is stating in her talk, and I believe she is very correct, the tumor's microenvironment is very important. It's just that it is really not a revolutionary idea. The guys doing cell function analysis have known this for years (Nagourney and Weisenthal) and have gelled this idea into their drug selection technology. Please listen to her lecture, it is very important to know how the cells work in order to understand their language.
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vacationbound,
Ok, let me try this again. My original post was in response to a couple of previous posters whose comments indicated to me that they thought the high percentage of ER+ on their path reports meant that they had a high percentage of estrogen. I was only clarifying that that is not what that means on a pathology report. It means that a high percentage of the cancer cells examines have estrogen sensitive receptors. That is what I meant by the structure of those cells....that they have estrogen receptors...and those receptors exist in the same percentage regardless of how much or how little estrogen is available to them. ER status is not a measure of estrogen, it is a measure of estrogen recpeptors...two completely different things.
I agree with you completely that reducing the available estrogen deprives those cells of as much estrogen and that cancer recurrence should be confirmed with re-examination of ER status and all the rest that you said. But none of that had anything to do with my original post on this subject. I was and still am merely trying to explain what ER+ and % means on a pathology report.
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Thanks for the new thread. You're right it was getting intimidating. So far I have been on Arimidex for about a month or so. I got to get of it for 2 Weeks while I had my hysterectomy. I just started back on it yesterday, so I have a really clear line of side effect changes lately. Headaches and fatigue and joint pain are worse on the Arimidex. And the insomnia is just stupid. My onc (he's a new one because we moved to California) won't even listen to any pain problems, says I have to talk to my MD for pain management. Not sure I like this guy.
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Hello everyone,
I appreciate this thread and all the information posted. I too had begun reading the other thread and knowing I had 2 years of posts to go through was a bit overwhelming.
I've been on Tamox for 1.5 years and am expecting my onc to switch me to Arimidex next month. At my last visit he told me the test he had run to see if I was going to come out of the chemo induced menopause showed that I was not. But he wanted to do the test one more time so he did and I'll get the results in early August.
I've not had any problems with the Tamox other than the scare of having developed Uterine cancer. I was spotting for about a year and so that concerned me. The spotting has just stopped in the past month or so.
I do have some hot flashes and night sweats but they don't bother me too much. And I had them before I was on Tamox so I attributed them to being from the menopause and not from the medication.
I am a very active person and followed a very healthy diet before diagnosis. I have a bit of a "life is short; eat cake" syndrome now
that I'm trying to break myself of. Or at least break myself of eating the cake daily. 
So I have gained some weight but I also don't blame that on the meds. I hope to stay SE free on Arimidex! And follow your good advice to continue being active and be better about my eating habits.
Janice
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Not sure how I could forget about the one SE from Tamox that IS giving me issues and that is the thinning of tissue which causes painful intercourse. I've been on the thread where there are creams and such for helping but have not found anything to work for me yet (not giving up yet). My onc said this problem would get better on Arimidex???
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Nancy- Yes,
ER status is used to determine sensitivity of breast cancer lesions to tamoxifen and aromatase inhibitors. I just have issue by the way you are explaining it, that is all. Please do not take offense, but I will say that these status markers are not fixed, and various tumors can be expressed differently, i.e. one tumor being ER+ whereas another ER-, the inferences are expressed dramtically different. The ER's helix 12 domain plays a crucial role in determining interactions with coactivators and corepressors and, therefore, the respective agonist or antagonist effect of the ligand is relative; The "ERα" primary transcript gives rise to several alternatively spliced variants of unknown function.
Would like to share this also-
Youtube video "The control of Breast Stem Cells"
This animation illustrates how breast stem cells respond to steroid hormone despite the cells not having any steroid receptors. The animation illustrates the research published in Nature (Vol 465, Issue 7299, 2010) by the laboratory of Jane Visvader and Geoffrey Lindeman.
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Hello
I will just jump in with my observations: I finished my chemo in OCT 2011 and then radiation therapy at the end of Jan2012, and was started on Arimidex immediately along with fosamax. After two months, I noted a huge difference in my "bounciness" as in it was gone and I needed those 30 steps to get myself moving after any length of time being immobile. (My hips ached so badly, and I was a healthy 61 before this all started.) I mentioned this aching via email to my oncologist, who advised me to stop taking it and come in and see her. I stopped it, but was so mentally elated that I proceeded to shovel/turn over three raised bed gardens, weed the entire yard, haul mulch, and dig out bushes. In 10 days I was aching all over far more than when I had been on the arimidex, so I went back on it and canceled the onc appointment since I had not given it a true test to see if I could improve my aches while off of it.
Biggest surprise.....I haven't had any stiffness since to speak of. I also began reading "Younger Next Year for Women" by ? and Lodge, and I have tried to use the 7 principles it espoused, the first 3 concerning exercise, and I hate to exercise for excercise's sake! My Oncologist also stopped the fosamax and put me on Zometa IV every 6 months, since it has shown to be cancer-protective.
Most importantly, it appears that the arimidex is working, the spots in my lungs are shrinking with each CT scan.
By making the daily effort to eat healthy, walk/run/swim/do stairs for a total of 45" most days I have lost an easy 10# (BMI now 21), dropped my cholesterol total by almost 100 points and I don't seem to have the aches any longer. I can only hope this continues to work for me, and might help others to combat the SE they are feeling on this drug.
What was that commercial?? "A body at rest tends to stay at rest, but a body in motion tends to stay in motion"? So during commercials, I jump up and do stretches/jumping jacks/anything I can think of to move.
Best of luck and good wishes to all who have to suffer this dreadful disease and its aftermath!
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Congrats on all fronts, Linda! I find what you said fascinating, and I think related to the fact that you got stronger and took some of the pressure off your joints. Being muscled does that, and serious digging builds muscle. I also think that the Second Law of Thermodynamics applies.
Plus you get gorgeous roses!
I think I am ready to get back on a bicycle seat, but will do tomorrow, and something easy. There is a fun ride on Sunday that hits one of my favorite places to cycle, so plan on that one too.
When I started Armidex, it was 4 weeks post Taxol and the same week as radiation. I think some of the soreness was from Taxol. I was training for summer cycling events (which I did!) so getting plenty of exercise. I remember that I needed ibuprofen to get through long rides. I think that I am more in need of energy potions than prior to breast cancer. But it could be that I have learned that bonking isn't necessary, and not fun either.
Ten pounds is enough to make a difference in how your clothes fit, so hope you are enjoying that as well. Major, major congrats!
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I have found Aromasin to be much easier to take than Anastrazole. It was like night and day for me. If one doesn't work for you, try another. I started to feel better in a matter of days of coming off the Anastrazole. I went from zombie back to human being in about two weeks. Both were taken during radiaton, so if that were the case the Aromasin should have made me feel worse not better since it was taken during a longer period of radiation.There are options out there other than Anastrazole. I encourage anyone to try another before totally writing off AI's altogether.
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Good advice, mini. It is amazing how the AI's effect us so differently. It is also fortunate that we have choices. Caryn
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exbrngrl - We are fortunate. I have said often on here that I would have gone w/o any meds if Anastrazole was my only option. It was horrible. No QOL at all. Now once I get these last 2 rads out of the way, I can try to get back to some sense of normalcy!
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Linda-
Question: When you say Zometa is cancer protective, what does this mean?
Also, you mention lung spots, so your stage IV now? The Arimidex has recently shown that it combats estrogen in the lungs
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vacationbound,
I don't mean to belabor this but I think we are trying to make totally different points. The ONLY point I made is that the ER status on a pathology report is by definition relevant to and only to the cells in the sample provided and identifies the percentage of the cells sampled that have estrogen receptors, not the amount of estrogen available to those cells. Any of the rest of what you are discussing in terms of lessions, tumors, sentivity to AIs, stem cells, etc. are all different topics none of which I addressed in any way, shape, or form.
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I was on aromasin from march 4th to about 3.5 weeks ago. I initially had shoulder pain but attributed it to side effects of getting rearended last summer. However about 4.5 weeks ago I started with horrible leg pain and stiffness. I am athletic and could barely walk.
Since stopping aromasin the pain initially improved but has returned again. I am now going to try arimidex. I am hoping for the best but discouraged.
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Sorry Nancy,
I do tend to labor my efforts; It's just that the subject of cancer is so complicated-but Thank you for your clarification, very well said!
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About Zometa, good question. I had initially declined Zometa, opting for Fosamax. But when I changed oncologists, my new one was quite emphatic that recent Zometa research had shown that those on it had a significantly lower breast cancer recurrence rate, and was therefore anxious to stop my fosamax and move me over to Zometa after about a 4 week break. I was hesitant to go on it due to the possible side effects, but he was quite convinced that it was important that I change over to it, so I have. I encountered no side effects after this first infusion.
And for my lungs, during staging, immediately after I received my diagnosis, they did a CT with contrast and noted 3 spots in my lung. After my first round of AC, I had a pulmonary embolus and they found it via a second CT scan and then noted that the largest spot had diminished in size. A third CT scan 3 months later showed a new irregular mass not previously seen, and just recently my CT scan showed this mass has also diminished in size, I figure it is due to the Arimidex. Because any of these spots were under 2 cm, they were not considered mets during staging, nor were the three supraclavicular nodes that were seen on my original CT scan considered mets. Most have disappeared since the chemo, but the supraclaviculars were also separately radiated daily.
Let's just keep the faith that those lung spots will continue to disappear forever by the time I am done with the next 4 1/2 years of Arimidex.
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Linda....a close friend of mine who initially wasn't given hormonal therapy developed lesions in her lungs. They found it during pre-op for foot surgery. Anyway, she had the larger ones removed, but they couldn't get everything.
Hormonal therapy took her to NED, and she has been there for more than 10 years. BTW - she found anastrazole a lot easier to tolerate than Tamoxifen, a good thing as she needs to be on an antihormonal for the rest of her life.
She had a rough time, but at this point, leads a full life, has a great career, and is absolutely beautiful.
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Linda,
Thank you for sharing, could I ask if you have a link to the new study on Zometa lowering BC recurrence. They want me to take a bisphosphonate (Zometa) and I am not comfortable with either; I have seen many claims that it has anti-angiogenesis effects but these clinical trials are what I want to get my hands on! Zometa- the manufacturer Novartis clearly and specifically state no such claims are made that Zometa is an anti-cancer therapy drug (see website Zometa.com)0 -
Zometa is a bisphosphonate, Femara is an aromatase inhibitor ( like Arimidex or Aromasin). Is your concern about the bisphosphonate or the AI? Many women take both as the bisphosphonates offset bone loss from AI. Yes, I too have heard bisphosphonates may provide some protection against further bone mets. My mo thinks the jury is still out on this. Sorry that I have no studies to cite. I take Arimidex, daily, and Aredia (similar to Zometa) monthly by infusion. I have had no significant problems with either.
Caryn0 -
Just an FYI - if you have any issues with your pancreas, you are pretty much out of luck (like me) for any injectables. I am having to work with just diet, supplements and exercise. I'm trying it for a year. If my bone density worsens, I will have to change to Tamox. :-(
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Sorry Caryn, big typo-I changed post to read (Zometa)
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No problem! It's a wonder any of us can keep all this bc stuff straight. I recently had dinner with a friend who is a nurse. He was very impressed by my newly gained medical vocabulary!
Caryn0 -
Oh my gosh. I forgot to take my phone off vibrate yesterday and didn't hearthe alarm to take my meds at noon per usual. Withhout thinking I took it at 6:00pm. At 4:00am I was still wide awake! :-( I will miss a day before I do that again!
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http://youtu.be/gZ8id_WPH9U
