Life on aromasin
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ElaineTherese, be careful with the Ativan, it's very easy to become dependent. When I can't sleep I try aromatherapy.....lavender and blends from Bath and Body Works for sleep. As much as I would love to take something to help me sleep, I don't want to add any more meds. If you get the joint pain I have found that gentle yoga helps a lot!
Martha
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Martha,
Yes, I do worry about Ativan-dependence. I've raised this issue with MO, who hands those prescriptions out like candy at Halloween. I do try to use my pills sparingly, if at all. Thanks for the tip about yoga! I also like to go to the pool when my joints feel creaky.
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Just an FYI, I have been taking a low dose Ativan (.05 mg) for years since a break in (happened while I was asleep and he came right into our hotel room and woke us!!!) because my hubby used to travel a lot for work and I just could not sleep at all after the break in. I don't take it every night but lately, have been taking it more often because the joint pain can keep me awake and I can't get comfortable.
I can skip days on end and still not feel I "need" one. I think taking one for sleep does not make you physically dependent (at least not for me) but perhaps you can become psychologically dependent on this drug. But, you may be different than me. Because of the small dose, my doctor told me it should not be a problem to stop if I want to and I have found that to be the case for myself. BUT, if you take more, this drug can be extremely dangerous to stop taking from what I have read (which is why I take so little of it) and in fact is much worse than coming off many other narcotic drugs.
Point of the post is avoid if possible but don;t worry too much if you need it to get over a hump or bad time.
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I've had a script for Ativan for 7 years (two different oncs. two different countries) - I take it sparingly a half dose when desperate for sleep (I sometimes fall into a pattern of insomnia and it breaks that) and always a half dose before drs. appts. or scans - yes, I am sure it can be addictive if you have that "addictive personality" but apparently I don't - I certainly don't crave it. As for yoga - not going to happen because all previous treatments have made my ability to get down on a mat and get up again useless. As for aromatherapy - sorry I have severe allergies and am thankful that all my healthcare facilities have signs up requesting "no scented products please" - what I am trying to say is that Ativan isn't the devil if you heed the warnings and honestly it has saved my life.
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Glad that it's working for you guys. There must be something wrong with me because I tried Ativan a few times, but it had no effect on me. Weird, huh? But I must say I've been making great strides against my anxiety. The bad movies and ruminations that use to play in my head every night before bedtime have all but disappeared. I"m getting some help from psychologists with "talk therapy," but that's been hit or miss. Still trying to find the right one. I've upped my activity level - started walking, doing gentle Yoga, but gradually easing back into it very carefully due to my LE.
Does anyone here have major issues with brain fog? I swear I'm losing my brain. I don't whether to blame it on depression, AIs or early ALZ. I'm going to pursue testing soon if it gets any worse! I'd like to get back into the job market but I'm afraid my memory abilities are quite limited at this point. It would have to be something very easy with very little stress. Good luck with that, right?
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bc101 -- everyone does seem to have different responses to meds, don't they? My poor son has autism and has developed some serious behavioral issues as puberty hit -- we've tried all different things, and meds never work for him the way they're supposed to. But, glad to hear that you've found ways to reduce your anxiety! That must be a huge relief for you.
I haven't developed brain fog yet, but maybe I haven't been on Aromasin long enough to find out. When do SEs from this med usually surface?
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Dear all,
I'll be starting aromasin in a couple of weeks. It will be my first hormonal therapy. I'd be grateful if any of you could chime in one what you've done to prevent bone loss. I'm going in with a good bone density and want to do my best to preserve it. Also, did you find you needed to switch moisturizers? And finally, what's the best time of day to take it?
I'll see what develops with joint and muscle pain.
thanks!
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nottoday, I started my 5 years of aromasin with good bone density due to me taking fasamax in the past. I upped my weight bearing exercises a lot and became more regular with my calcium supplement, also added lots of yogurt to diet. Guess it worked as the bone density at the end of my 5 looked fine, minor amount of bone loss at hip only
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I started out with a dx of osteoporosis before AIs, but have been having Zometa infusions every 6 months which is supposed to help against further bone loss. I also take 1500 mg calcium w/Vitamin D, drink a lot of milk, try to walk and keep the joints flexible. No joint pain or any other known SE's with Aromasin.
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Have been on aromasin for a little over a month now. Had my ovaries removed so I could have an alternative to tamoxofen. I am also on effexor. Hot flashes are there but not too bad. So far no aches or any other SE's. Fingers crossed it stays this way!
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I've been on Aromasin for almost three years now - I started on Arimedex, and was on it for just over a year, but had serious ses from it, hence the change to Aromasin.
Up until the past month Aromasin has agreed with me, apart from some fatigue and joint pain. I had a brain MRI last week as I've been having dizzy spells, a crushing (and I mean like someone kicked me suddenly in the back of the head) headache and I've been seeing things moving in my peripheral vision. I was also very, very tired and feeling extremely foggy and found it hard to concentrate. Of course dr (and I ) panicked a bit, hence the MRI. It was clear - no abnormalities apart from a very small bright spot deep in the brain matter that they didn't feel was a problem.
I took myself off Aromasin just over a week ago. I see my onc in three weeks and he'd given me two months off an AI in between finishing Arimadex and starting Aromasin, so I figured I'd take a bit of a break to see how I went.
I'm feeling like a new woman - brain is back and nowhere near as tired.
I don't want to not take an AI - I've seen too many friends with similar dx go on to be stage IV. I'm guessing I can go onto another AI, but my question is: if the bc comes back as mets, does that lessen the AIs I can take as a next defence? Or can I take one I've already taken and deal with the ses, which I'm happy to do so long as it's working.
Anyone have any ideas?
Trish0 -
Good question. I think it's hard to answer because if the cancer comes back, doesn't that mean that the AIs were not effective? I'm told the AIs are equally effective, so it doesn't matter which one you take. But here is a study using Femara with palbociclib. It's shown success for first line treatment, but they are considering it for recurrence, too:
http://breastcancer-news.com/2015/02/25/cdk46-inhi...
http://www.lbbc.org/Understanding-Breast-Cancer/Br...(audience)/132/
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I believe if you get mets while on one AI, they switch you to another. If you've taken more than one over the years, it's assumed that the current one failed. Hopefully one of the others will work. If you go off AIs for a while and small mets appear, it would seem that the AI you were on was keeping it at bay. There are probably many of us on AIs who have undetected mets because the AIs are doing their jobs of keeping the cancer from growing.
What's tough is that AIs cut the risk by 50%, not 100%. Still it's not 50% of us who'll get a recurrence. It's 50% of our individual risk.
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What do you mean by 50% of our individual risk? Are you referring to the % of how much our tumors were ER/PR+, or the molecular characteristics (Oncotype score)?
Isn't it "funny" how they say AI's are all equally effective, yet if one fails, they still hope another one will work. I wish there was more that could be done to see if it was working or not working. They don't even know if the current recommended dose is appropriate. I'm hoping that by the time I'm done with Aromasin, there will be more known and offered in this arena.
I know .... it's a lot to ask, but I can dream, can't I?
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bc101 what doxie means is if you have a 30% risk of your cancer coming back if you don't take the AIs then taking the AI will reduce that risk by 15%.
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lago, I got anxiety and now I am taking Bupropion and doing great. Minimal se with Aromasin! Yeah!
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Day #5 on Aromasin -- I woke up with a yucky UTI, peed in the cup at the onc, and am on Cipro! Just bad luck, I guess.
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BC101, considering the thousands of women who must take AIs for years to reduce their risk of recurrence, I don't think it's at all a lot to ask that more research be done to determine the minimum effective dose to achieve the highest efficacy with fewest side effects or to find other agents that work just as well without the SEs!
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Hi ladies! This is my first time in this forum. I am 39 yrs old without children and have been on tamoxifen for a year and a half now. I do not have any side effects. My oncologist recently brought up the option of doing lupron with aromasin just because she read some new studies. She said women my age just do better on this. But I have no issues with tamoxifen at all. And the lupron will put me into menopause and I'm not ready yet. She also said that if I stop these two meds that my period will return eventually. However, my OB/Gyn said I'll be in menopause for good most likely and if I want a kid, I better do it now!!! I'm meeting another Gyn. next week to get another opinion. I'm very confused!!!!!!
Any facts, opinions, etc? Please share. Thanks a million
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Hi budrfligal. What I have is only an opinion but it is a strong one! Do NOT let your doctor bully you into changing treatment options if you don't want to. Tamoxifen has been used for years for ER+ BC and since you are NOT post-meno, you should continue on that track if you choose to and since that is the drug used for someone who is still menstrating.
If you don't want to be dragged into menopause chemically, speak up and tell them that! If it were me, I would not go there if I did not want to. As long as you are taking a hormone blocker, you should do what you want to do. Especially if you still may want babies!!
Whatever you decide to do is what is best. It is YOUR body and your call. Best to you!!
Edit: Oh and ask your MO if she can give you stats on how much better women do with the AI/Lupron vs. Tamoxifen. I am betting the differences are not all that much percentage wise but since I am not an expert, she should SHOW you where she came up with this so you can at least make an informed choice.
Hugs and do what is best for YOU!
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budrfligal13 I agree that the switch to change is yours to make but do try and understand what your oncologist is saying. I know my oncologist really doesn't like Tamoxifen. I should have started with Tamoxifen since I went into chemopause but since I was so close (based on my family history and in peri-menopause) she started me on Anastarozole (arimidex). I'm currently on Exemestane (Aromasin).
When I was having issues with Anastrozole and wanted to quit all AIs after 3 years I asked about Tamoxifen. Her exact remarks were "It's better than nothing." She considers me high risk for recurrence at stage IIB even though no nodes.
and I think getting 2nd opinions is not a bad idea.
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thanks Iago. My MO isn't saying "you need to switch!!!". She just said think about it. However I have nowhere near as much information as I need to make an informed decision. May I ask why you had 14 nodes removed if the sentinel was clear? You said you had no lymph node involvement, thank goodness. But if they saw that, then why did they take them out? For me, prior to MX,the radioactive dye showed no cancer, so I just had the sentinel node and 1 other removed.
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Hi budrfligal!
I am premenopausal and was originally slated for Tamoxifen. However, I am doing ovarian suppression and Aromasin (exemestane) because of the SOFT study results, which came out last December. The SOFT study showed that "Women who received prior chemotherapy benefited the most from the addition of ovarian suppression. The relative risk of breast cancer recurrence decreased by 22% in those women who received both ovarian suppression and tamoxifen and who had prior chemotherapy, compared with those who were just treated with tamoxifen. This decrease was not statistically significant. Out of every 100 patients, the addition of ovarian suppression to tamoxifen resulted in 4 to 5 fewer patients having a recurrence within 5 years in this cohort. Women who received prior chemotherapy and were treated with exemestane with ovarian suppression had a 35% decrease in the risk of breast cancer recurrence compared with the women who were treated with tamoxifen—a statistically significant result. This translated to 7 or 8 fewer women out of 100 having a recurrence within 5 years."
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hi Elaine. Thanks so much for posting. I think the fact that I chose a double mastectomy should play a factor here too. I see you did not. my risk of a recurrence (in the breasts), is slightly lowered because I no longer have real breasts, although positive cells could show up in the chest wall. And unfortunately we all have the fear of cancer coming back ANYWHERE in the body. That's the fear we all have and it sucks. We just can't live ours lives worrying though
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budrfligal,
You may well be right. I'm not a scientist! Since I'm just starting out on hormonal therapy, I didn't have a problem trying out OS + AI. But, I can see how it might be somewhat annoying for your MO to change her tune from Tamoxifen when you're good with that. One big factor in the SOFT study was age -- your MO might push OS + AI if you're on the young side. Otherwise, I'm not sure it makes THAT much of a difference!
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Elaine, I'm 39 now. Diagnosed may 2013. Inmay be on the young side but I'm on the cusp of child bearing age which is what I'm dealing with now. Unfortunately there are more and more younger women being diagnosed everyday. It's an epidemic. I have my own theories, but BPA in plastics, cans, and paper (to name a few), is estrogenic. And let's not leave put our water and countless carcinogenic products hidden in our environment. It's like it's all catching up to us.
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budrfligal13 I had 10 nodes on the IDC side (no sentinel) and 4 sentinel from the other side. (We never biopsied but there were 3 suspicious areas. One ended up being LCIS). Back in 2010 the standard care was if your tumor was over 5cm they automatically take out the level one nodes. I don't believe that is standard care anymore.
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Hi everyone. I am 41 and started zoladex shots and aromasin 2 months ago. So far, no real side effects except I have been really cold. It's been really cold here (in St. Louis),so maybe it's keeping the hot flashes away:)
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Lucy that's great. Hope they never come. My hot flashes were pretty minimal even when I was doing chemo and went into chemopause. I was 49 when I did chemo. Hope you are like me.
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Lucy,
I just started zoladex and aromasin myself and haven't really had serious hot flashes either. I still seem to be getting the warm flushes I was getting from chemopause. I was expecting something more sweaty I guess.
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