Doing Well on Aromatase Inhibitors (AIs)
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Meg-I don’t have time to look for the studies right now, but here’s a link to a thread where we looked at the studies for extending AI therapy beyond 5 years vs stopping at 5 years:
https://community.breastcancer.org/forum/78/topics/726592?page=324
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I've been doing okay, apart from the dry eye, so far on the Arimidex. I am exercising as much as I can stand (I don't love exercise most of the time, except for walking) and watching my diet more closely. I already was following a very low-fat vegan diet before being diagnosed. Having a hard time motivating myself to take the pill -- I thought I should cover the Rx label with something like *SUPER FANTASTIC NO-MORE-CANCER HAPPY PILLS*.
I joined a Facebook bc support group, to connect with other ladies, but wondering if I can continue to read all the horrible things they describe, like gaining a ton of weight from AIs. I just have to tell myself it doesn't happen to everyone, and odds are it won't be a problem for me. The Internet is not always your friend!
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MIRANDA - My MO's words were "this pill is your friend." Good luck. Remember if you have trouble, there are other AI's. I am much happier on femora than I was on arimedix but others feel just the opposite.
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Thanks, Taco1946.
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just thought of this tactic today for my son who doesn't want to take his BP, anti-depressant and ADD meds... Say to yourself as you pick each one up to take it:
This one is for my darling daughter
This one is for my sweet son
This one is for my loving wife
This one is for my mom
You can always embellish from there. Sometimes we need that extra bit of motivation.
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Miranda- I was so upset when I was switched from Tamoxifen to Anastrozole! I literally cried! I was first mad as hell that tamoxifen forced my body into menopause! Then to have to take this damn medication that would destroy my life...well after 2 weeks of moping around I realized I had lost weight and had more energy! I wasn't hungry all the time. I still hate taking the little white pill but I am doing so well....fingers crossed it last!
#yougotthis #bcsucks #weareinthistogether
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Great idea Lula!
Great attitude Vargado!!! I would love to be so pleasantly surprised!!! Weight loss, more energy!!! I can do that!!!
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Lula, beautiful idea. Got to remember WHY we're fighting.
Sometimes I feel bad complaining about a pill and what it MIGHT do, when so many sisters have been through and are going through far worse. But, everyone's journey is her own.
Vargadoll, I just love hearing that! So glad for this community.
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Miranda, stay away from the negative people and deal with an side effects when and if they happen. Go in with a positive attitude and an open mind. Our triple negative sisters would be so happy if there was something they could take after their initial treatments to lower their chance of recurrence, so we are actually the lucky ones (comparatiely speaking). Of ladies I know personally who've taken A is, the skinny ones stayed skinny, the plump ones stayed plump, and those of us who try to watch our weight, still have to watch our weight. Menopause itself makes it harder to keep weight off for many women, so you do need to work at it, and add exercise so that you are more toned and therefore look better (and are healthier) no matter what you weigh.
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I'm happy to say I am doing well so far on Anastrazole. It's been almost 2 months since I started taking it. I had diarrhea right after starting Anastrazole, and I blamed the AI for it. As it turns out, the problem was caused by Chia Seeds, not Anastrazole. When I stopped eating Chia Seeds, the GI issue cleared up.
ruthbru - I checked the NHI website that you recommended for statistics about AIs. It offers a wealth of information. I'm glad you suggested it.
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I'm happy to say I am doing well so far on Anastrazole. It's been almost 2 months since I started taking it. I had diarrhea right after starting Anastrazole, and blamed it on the AI. As it turns out, the problem was caused by Chia Seeds, not Anastrazole. When I stopped eating Chia Seeds, the GI issue stopped.
ruthbru - I checked the NHI website that you recommended for statistics about AIs. It offers a wealth of information. I'm glad you suggested it.
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There is another forum re Anestrozole and it was full of horrible SE. I read it before finding this forum, and before I started taking the drug. I had to stop reading it and check myself. It is what it is, I will get through it. And as no wall flower, if it truly affects my QOL I will ask to try something else.
ONWARD LADIES! One day at a time. I take my pill nightly at 12:30 AM, or is that 1st thing in the AM? LOL I take it with my Zertec D allergy meds.
We are all in this together. HUGS.
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I love the encouragement on this thread. Thanks everyone.
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I think of my SIL, BC Survivor, who was hacked and scared for life back in late 1960s. She was a cobalt patient and one of last survivors.
Every morning I work to find gratitude in my Arimidex pill.
This is a very encouraging site. Thank you, all.
Coach Vicky
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Hi ladies,
Seeing that some ladies in this thead went through prophylactic oophorectomy I decided to post here since I am at a crossroads with decisions about my hormonal treatment.
My cancer is triple positive (hence ER, PR positive) and I am trying to decide about the hormonal treatment, between prophylactic oophorectomy + AI, versus tamoxifen. I also had chemo, herceptin (which I will still get for a while) and I am about to start radiation. My cancer seems to be a nasty bastard that spread quickly to my lymph nodes and was still present there after chemo so I want to be as agressive as I can.
Since I am pre-menopausal (I am about to turn 49) the hormonal treatment would be tamoxifen. Another option is getting an oophorectomy (prophylactic ovary removal) and then an AI instead of tamoxiphen. My MO said I can do one or the other, but does not lean against either option. I will have a consultation with a gynecologist today to discuss oophorectomy.
I was in peri-menopause before my breast cancer diagnosis last fall. I was having painful, heavy periods every three weeks or so, and regular ovarian pain mid-cycle, apparently due to benign ovarian cysts that would resolve after ovulation. I also had an episode of abnormal uterine bleeding last year that scared me and required a month of HRT to resolve. I had hot flashes and my period disappeared with chemo, and if the symptoms after my ovary removal are the same I experienced during chemo, I'd much rather have those rather than the heavy periods, ovarian pain and uterine bleeding. Every period with ovarian pain feeling as if my ovaries are exploding I worry about something being wrong and ovarian cancer -and now about the breast cancer recurring too!
So, I am leaning towards getting an oophorectomy, but I am not sure I have my facts straight about the side effects of the oophorectomy, not to mention the side effects of the AIs. Trying to figure out if oophorectomy + AI is reasonable or an absurd overkill that will create more problems than it solves. I have read about osteoporosis and heart problems as a result of the oophorectomy, but how common are these, and is there any way to prevent them or minimize them? Since my MO didnt lean against either option I am totally confused. He sent me to the gynecologist but I am not sure what to ask because I suspect he may not know about the breast cancer side of it and what could be better from that perspective. What should I ask him?
Thanks in advance
LaughingGull
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Laughing Gull, Don't know much about this. Wanted to make sure you had looked at articles on the main site
http://www.breastcancer.org/treatment/surgery/prophylactic_ovary/what_to_expect/during
http://www.breastcancer.org/research-news/20080111b
These are just two of the articles that came up when I did a search for oophorectomy on the main site here. There were pages of them, some more relevant to you than others I am sure.
I will chime in with others here to say that the side effects have not been bad for me.
Good luck with your decision making.
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Hi JuliaJazz.
I did look at those links. The first one relates what happens before (like what tests you will get), during and after oophorectomy, but nothing about what goes into the decision. And the second one is old, from 2008, so many things may have changed since then. I really cannot get the story straight in order to make the decision.
Thanks for chiming in! It is good to read that the AI side effects dont have to necessarily be too bad.
LaughingGull
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laughingull,
Osteoporosis and heart issues are possible side effects from the lack of estrogen. Since AI prevent the body from creating estrogen these things come up as side effects. You can manage both with exercise- cardio and weights. May not prevent bone loss but will help to slow it down
I dont have the answer for you but do suspect that you will choose the right one for you and your peace of mind.
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CindyNY
I’m impressed that you are awake at 12:30am! My lights are out by 9:30. I take my aromasin at 5:30am.
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Laughing Gull, your ovaries are going to shut down in the next few years anyway. This breast cancer diagnosis is moving up your timetable a bit. Have you had any genetic testing done for any gene mutations that might put you at a higher risk of uterine cancer or ovarian cancer? I would not be so concerned about the side effects of the oopherectomy...it is going to put you into menopause but the Tamoxifen or the AI’s are also. Since cancer was found in two of your lymph nodes...throw everything at this beast.
I am pleading for my ovaries and uterus to go but I tested negative on the BRCA1 and BRCA2 so my MO and Gynecologist says there is no protocol to remove them. I had no pregnancies and that puts me at a high risk for breast cancer (nailed that one) and ovarian, uterine and cervical cancer. I suppose I have to wait for cancer to strike those organs before they will do anything😩
I hope that other women in your age group will chime in here with their oopherectomy experiences.
All the best
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Thanks bella2013. I tested negative for genetic mutations, too. However, my MO sounds open to the oophorectomy, maybe because they suspect that what is now driving my cancer is hormones, once the fastest growing cells were killed by chemo. So he is open, but not pressing for it or leaning towards it...he is leaving the decision to me. My gut feeling coincides with yours...kitchen sink strategy. Still ,I want to make sure I have the story straight and make an evidence-based decision. My concern is that I heard that there are benefits in keeping your ovaries, even after menopause, they don't totally shut down after menopause, somehow they keep protecting you from heart disease and osteoporosis, and you lose that benefit if you remove them.
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Just My 2 cents on whether exercise can effect bone loss density. Lifting weights (resistance exercise) will increase bone density...the force of muscle pulling across bone initiates the bone building process. Density can be increased upwards of 8%. In the event of osteoporosis it can prevent bone loss/fractures by the same mechanism, and build density perhaps to a lesser percentage. For this reason I started lifting 4 years ago. I had a baseline scan done and am due for another in December, I’m really interested to see if the stats hold water....especially after switching up to an AL
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laughinggull- I chose oophorectomy. Same as you with heavy periods, miserable cramping. I got relief from the mirena for a good long while but then the mirena wasn't holding it at bay anymore. Went in to discuss this with my GYN and ended up with BC diagnosis.
In head to head trials AIs have higher survival rates and lower recurrence rates compared to tamoxifen. Higher and lower enough to be clinically significant. That alone told me what path I would take. The other points below were the icing on the cake:
Had all the baby making parts removed-no more periods, no more 'oops! It came early!' accidents, no more worry about pregnancy when I have grandchildren already, no more cramps. Surgery was lap-vag and easy. No pain afterward at all-I even asked multiple times if they were positive they even did the surgery(yes they did).
Other than hot flashes (which I had before) and some joint pain in my left hand all is good.
My MO did prescribe tamoxifen in the interim until I could have the ooph, but then it gave me blood clots in both lungs and in 1 leg, so it was a nonstarter for me and pretty much sealed the deal on the ooph
Yes ovaries do help protect bones and possibly heart (possibly based on some newer studies). But they do it by releasing androgens that are converted to estrogen in the fat by aromatase. So an AI is going to block that conversion. As mentioned above there are steps you can take to decrease risk of bone loss and increase cardio health. I chose that path with less odds of recurrence and longer survival. Wouldn't change a thing.
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Laughinggull - I had an ooph last fall. There was very little pain and I was able to go on a 7 hour car trip 2 days after surgery with no problems. The reduced life expectancy and heart problems associated with ooph’s are due to a lack of estrogen in younger women who undergo this procedure.0
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Coach Vicky, thanks for sharing about your SIL. My grandfather also had the cobalt treatments for lung cancer. He did not make it. Thinking back on their limited options back then...I can find gratitude for that 1 mg pill
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Runrcrb- I'm a retired night owl. Its quiet at 12:30 AM, easier to remember it. Tonight I'm taking a friend to the airport at 3:15 AM; I'll sleep until 10:30 or so the next day...gym at noon.
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CindyNY, that other forum on arimidex SEs was really upsetting to me. So far I have barely experienced any SEs, and I suspect that's how it is for most women.
Coach Vicky, I appreciate the perspective. I think of my late sister, the chemo, the steroids, the suffering, and her early death at age 42. I think also of an aunt I never knew, who died of bc in 1958 at age 36, leaving two small children -- I shudder to think of what "treatment" consisted of in those days. Compared to this, a little white pill is kind of a miracle, actually.
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LaughingGull, with all the unpleasantness you have had with the equipment, you might want to get them out with or without cancer. I had a hysterectomy due to a prolapsed uterus and was THRILLED not to mess with all that anymore. I already was in full menopause though so had no side effects whatsoever. Younger ladies who have hysterectomies are the ones who have more problems. For them it's a sudden drop in hormones and happening much earlier than nature planned.
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Hey Patti,
Just weighing in on the positives for ya, and know that my experience starting on Tamoxifen, now on an AI for 2 weeks has been uneventful. I was nowhere near menopause when I began Tamox and all I've experienced is the hot flashes and bone pain (in my feet mostly). The hot flashes are so manageable though, for me it depends on what I wear, definitely wear more short sleeves in winter now, and exercise is key to keeping the bone pain at bay. Here's hoping for a low oncotype for you, mine was a 9, but I have used all the tools in my arsenal to keep a recurrence at bay. Cheers!
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I had no genetic markers and I was diagnosed with uterine cancer 3 months after being diagnosed with BC. I was perimenopausal too. Had a total hysterectomy. My take is that it just moved up menopause and all the effects I would naturally experience 10 years from now had I not been diagnosed. Exercise keeps me healthy and sane.
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