Life on aromasin
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v interesting discussion on brain fog. I noticed this w tamoxifen in a pretty material way after 3-4 months, although I did chemo so wasn't sure where the problem began.
Post SOFT results flipped to zoladex and Aromasin (am 39 so certainly pre-meno), and have found myself able to think with far more clarity. Unexpected but very welcome. My job requires a fully functioning brain, so huge relief. Other than the Zoladex shot being quite an unpleasant experience (14 gauge needle!), of course.
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"Very thin women do very poorly on AI" I don't consider myself very thin but I'm not full figured. I guess my question is what does "poorly" mean? Does it not work as well or do we have increased SE.
I too am on 2 meds for SE on Exemstane including Prolia.
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RainDew I am with ya. I switched from tamox to lupron + exemestane and definitely feel like I am retaining my faculties.
Iago: I have also heard that slighter frames are not a great match for AIs. I think "poorly" means that it is increased SEs, especially bone-wise.
I am much less stiff, sore, and creaky, than when I was on tamoxifen (oddly enough) and of course I am able to actually work which is a big plus.
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Oh then yes you are right. I now have osteoporosis. I know I would have eventually I would get it but this is early. Diagnosed with it at age 52. I thought you mean it wasn't working. Sure feels like it is
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Lago
He meant the SE are worse on thin women not the benefits of the med.
Then again this is not a proven fact. Just an observation he made on his patients. There may be other underlying facts that made SE worse..
I didn't take it a truth only I found it interesting. I also thought it cool that a family physician would make the effort to observe this.
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Radar Girl, I'm interested in the meds you take to counteract the se's from the aromasin.
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I am not on too much anymore and you have probably discussed this I apologize. I have been on Tamoifen for a little over 2 years and on Aromasin three years in March. So total of a little over 5 years of hormone therapy. My Oncologist wants me to stop taking the Aromasin. She said low stage, no nodes and low grade give me a 4 out of 100 chance of reocurrence based on a tool she used to predict. My dexascan shows declining bone density. Still normal but just on the verge of ostreopenia. I am afraid to not take it. I said what about the studies that show it is more effective if you stay on for 10 years. She said for some of her patients she does recommend that but based on my tumor and prognosis she doesn't think I need to. She said I need to consider life style and what osteoporosis can do to it. So I have to decide. I see her again in October. Due to some family issues my time was work full-time and then go to the nursing home each evening until 9 or so to help care for my parents for 17 months. So no time for exercise. They are both gone now. Two months apart last September and my Mom on Thanksgiving Day 2014. So now I have the ability to do the treadmill and walk etc. So I am thinking maybe I should do the treadmill etc and see if I can bring it up. I am now also taking my calcium religiously.
Any thoughts out there from what your doctors have told you. And yes I have insomnia and joint pain and some occassional nausea from it. But scared to stop.
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Hopeful I am now just over the border and have osteoporosis. I am considered high risk for recurrence due to my tumor being over 5 cm (even though no nodes). My MO has hinted at the 10 years. I am being treated now for osteoporosis. I was osteopenic before chemo with a big drop after chemo (putting me in chemopause). I have a family history of osteoporosis, I'm Caucasian, small frame, former smoker and former diet soda drinker. I'm like the poster gal for osteoporosis. I'm starting my 5th year (1st 3 on Anastrozole). I'm not so sure I'm going to do the 10 years. Will see how my bones are holding out.
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lago, It is so hard to make the decision. I did not have chemo or radiation but multiple surgeries due to bilateral infections and 4.5 years for reconstruction. Then when I had a hyst and oopherectomy a couldple of years ago laproscopically supposedly simple surgery ended back in hospital 2 weeks later with ileus (bowel quite working), pelvic abcess, septic with the bacteria in the blood stream one from the bowel, guess my surgeon must have knicked my bowel huh and a urinary tract infection! PICC line at home with around the clock antibiotics for 3 weeks and off work for 3 months. So when they say 4 out of 100 I can't help as much as I try to be positive to not go to the it will be me as everything they told me would happen did not and everything that could go wrong did. I know need to base decision on science but it is my safety net and I am scared. Scientifically I understand but emotionally I am just scared.
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Hopeful Well you can stay on it another year and see how you do. You can always quit. Be sure though that they start treating your osteopenia if it gets close to osteoporosis or it continues to decline rapidly (assuming you stay on Aromasin).
Take it year to year.
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I dont know what happened to my post....its disappeared. Anyway...
I cant believe that complete depletion of estrogen does not have negative long term effects.
My MO said that when my 5 years of AI is over that the new stats for 10 years will be out but I that i should assume to be on 10 years of AI therapy.
I have already decided. NO WAY I am not doing that.
If the bc recurrs that means the AI was ineffective. If I stay clear, than 5 years is enough.
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With DCIS, my MO will likely stop me at 5 years even though I am >95% ER+ I suspect and that is fine with me. I agree with Raider Girl...too much likelihood of long term effects from this very powerful drug. Don't get me wrong...am grateful for the option, but after 5 years, am going to say Buh bye to this little white pill from hell...lol
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I spoke to my MO a year before ending, and she said for me, 5 years was enough
I stopped at 5 years and happy that I did. I am DCIS and
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I stopped my first AI at just under five years. Six months later I had a recurrence and now I am Stage IV with teeny tiny little mets to the bones. I'll stay on whatever AI works for me to keep those bone lesions under control for as long as I can now. PET Scan tomorrow so we'll see how the current AI is doing.
Don't think that just because you reach that magical 5 year point that you are out of the woods. Too many of us can tell you that that is not true for everyone, although I fervently wish you all are the lucky ones. I started at Stage 0 over 9 years ago. If I had known then what I know now I would have demanded an AI then as I am extremely ER positive.
Just my two cents...
JJ
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JustJean, do they think the cancer could've spread while you were on the AI
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Just Jean,
I would rub horseshit on my head daily if I knew it would keep the bc away.But I am having a hard time believing that more AI therapy is good. Chemo is good, is more chemo better?
I say now that I will stop in 5 years but since I am female I can change my mind.
Does you MO say that the recurrence would not have happened if you were still on AI?
I read somewhere that recurrence is most likely for first three years and then goes up again after 10.
I am deeply sorry you have to deal with this again.
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It's the opinion of my MO that the break in between the two AIs stopped the suppression of the cancer and allowed tumors to grow. Which they did, rapidly. I had a thorough exam at my previous MOs office and three weeks later found a marble-sized lump along the mastectomy scar. Surgery, rads, and then a PET scan found those itty bitty lesions all up and down my bones.
Arimidex gave me terrible SEs but so far Aromasin is much better. I could (and will if it works) stay on this one for a long, long time.
JJ
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JustJean - How long of a break did you take? I wonder how he knows or suspects that and if that is true, why did they let you take a break?
That just sucks. I hate hearing about anyone getting a recurrence. Hard to believe it all started with Stage 0. So many times I wished I was Stage 0 instead of 2b. Just goes to show you, nothing is for certain.
Thanks for chiming in with your two cents. Good luck with your Pet Scan tomorrow!
HUGS!
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Unfortunately some of us ER+ gals currently have undiagnosed mets or a new BC, but the AIs are successfully keeping us NED. When we hit our 5 or 10 year mark and go off the AIs, then mets or new BC will surface in a few months or years. It's not like the AIs weren't working, they were by keeping estrogen so low that the cancer couldn't grow. Unlike chemo, AIs don't kill cancer, they starve it by keeping estrogen production as low as possible. Unfortunately they cannot bring estrogen production to 0%, so some cancers survive throughout treatment. As soon as we stop taking the AIs, then estrogen surges back.
The good thing is as long as we stay on AIs and the cancer doesn't figure out how to work around the low estrogen environment, we stay NED. I wish there was some way to know for certain that the BC was 100% gone, not just NED. Now we are rolling the dice and playing the odds. I expect in the future many will be looking at having to decide 5, 10, 15, 20 years out whether to keep taking AIs vs a risk of recurrence.
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Well, that stinks. If I had known that, I would have opted for chemo and radiation. They kept telling me that chemo wouldn't work for my kind of cancer. When I was first diagnosed they said I was "lucky" to be ER/PR+. When my Oncotype came back as 10, they said that was I "lucky" to have such a low score. During active treatment, they said I was "lucky" to be able to avoid chemo. Now I know better. I guess it's all a crap shoot anyway.
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Doxie, did you have an oncotype dx test and if so what was the score?
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I am trying very hard to discover a way to "thrive" (I hate that word, but whatever) in a low estrogen version of myself. Side effects-wise, tamoxifen was not working for me and I switched to a lupron shot + exemestane. I have missed the deep sleep I enjoyed while on tamoxifen. But otherwise, this seems to be working out a lot better. I think stories like yours, JustJean, are so important. Those of us with early stage diagnoses and low oncotype scores might think we do not need the hormone therapy and it may well be overkill for some. But all I have to do is look at my son (who is 11) and read your story to stay committed to finding a way to stay around, happy, and "me" as long as I can and however I can.
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bc101, my doctor told me low grade does not respond well to chemo, so might not have helped you to have taken it anyway.
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JustJean you make an excellent point. I don't know how many of you knew Marybe. She was a real favorite on these boards. 21 year survivor. She recurred after 6 years. Was never offered Tamoxifen or AIs. She told me she felt if she had done them she probably would have never recurred. This is why I'm not saying no to 10 years but we'll see. Which battle would you prefer to deal with: osteoperosis or metastatic breast cancer? Heart issues or metastatic breast cancer?
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BC chemo works best of fast growing cells. Grade 1 is slow growing so the chemo probably woudn't be worth is for you. Totally makes sense you didn't do chemo. With a tumor larger than 5 cm you like me will probably be told to do the 10 years. Next study I'm sure will tell us to stay on indefinitely. Also you have a node involved and ILC. ILC is sneaky and likes to spread a bit more than IDC.
JustJean I am doing much better on Exemstane too. Been on it for a year now. 3 years on Anastrozole.
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Ok ladies you are making me re-think the 5 years and its over for AI. I am going to just deal with the here and now.
I wish an MO would answer the following maybe some of you may know.
#1 why is there just one dose regardless of a persons body size , estrogen receptor % etc.
#2 why isn't a hormones blood profile test done.
Maybe I could have 25mg every other day and have the same results. Maybe 25mg isnt really suppressing as much as needed.
If this were a hypertension med, I would check my BP. Diabetes med, check blood sugar, even on HRT, levels were monitored.
All I am told is that this is the correct dose and the a blood test is not needed.
In other words, shut up and do as you are told.
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Raidergirl, these are the questions, right? I can see why someone who is likely dealing with patients who are fighting to stay alive looks at me like, "Shut up and take the pills" when I ask questions about side effects but if the goal is compliance, someone needs to produce the science that answers your questions. AND, don't get me started on the status of peri- post-menopausal women in the priorities of medical research....
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I intend to take my AI as long as needed. I told my MO that I'm committed for the long haul. And yes, you're right. Lago, you're so right. Any SE is way better than BC.
Raidergirl - I too, have wondered about those same questions. Are they just so busy trying to find a cure that they don't have time to finish the work with AI's? You would think that SOME dose of AI is better than none. Just like with taking a statin - a few years I reduced my dosage and only took my statin randomly. Even at that, my levels went down dramatically. Makes sense, but who knows. No guarantees, right? All I know is that when my alarm goes off everyday at 5:00 pm to take that little white pill , I'm on it!
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bc, interesting on the statin, my cardiologist told me if I had problems with the statin to take it every other day, dang but that is what I began to do when I started again to get leg aches, will see how my numbers are in May at my next bloodwork up
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