How Many are doing 10 years on Aromatase Inhibitors
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wintersocks- I think this means that those of us that are highly ER positive have a greater risk of recurrence compared to ER negative cancers after 5 years. The main thing is that the risk is still lower and continues to decrease for all cancers after 5 years. In other words, recurrence risk for ER negative cancers decline very rapidly after 5 years, while the decline in recurrence risk for ER positive cancers is slower. This means that ER positive cancers have a higher rate of recurrence after 5 years when compared to ER negative cancers (but still much lower than the first 5 years).
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Grandma3X, that is how I read the article too.
Those of you who are struggling with side effects--know that you can ask to be switched to another AI to see if that might work better for you. I began with Tamoxifen, then chemo-paused, then moved on Arimidex (too little time now to say what I really hated about that drug) and now Aromasin--which so far is much better for me. Doable---although something about having to take a drug every day for years pisses me off sometimes when I think of it. I don't think of myself as sick, and drugs mean "sick" to me.
My MO is suggesting Prolia for bone protection from mets and because I've had some bone thinning because of the AI. I'm contemplating her recommendation but still gathering information and research stats before I jump into another drug tx.
Claire in AZ
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Yeah, I couldn't tolerate tamoxifen either, switched to anastrazole, was a little better at first, but now getting bad again. I don't think letrozole is any different, but might try it, or maybe try switching to the brand name Arimidex. Unfortunately the Aromasin is not an option, even generic is over $200 a month, can't afford that.
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grandma3x,
Great explanation. Think I was just panicking.
Thanks!
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18 months of AI and my hair started thinning like crazy. 1/2 as much as before. Getting a laser cap next week to see if i can prevent having to go back to a wig
Had thick curls before. Now have to pick it out and use gel to make it cove
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I had a visit with my MO today and it was my last dose of Letrozole after starting this AI in April 2007. I had previously tried Tamoxifen for 4 months but had issues with it - so had ooph to switch to AI at age 50. I asked if I could take a "vacation" from the joint pain probably worsened with the cold damp winter. He recommended instead that it was time to stop AI. I did get my Prolia injection for my osteopenia. Plus will have one more visit with him for another Prolia injection in June 2017 - then I am off his schedule to be covered by my GP. Very mixed feelings about no longer seeing an MO in the future. I am hoping to see improvement in my bone health now - hoping my hair will thicken, improved cholesterol levels and lower BP. This has been a rough journey to put it mildly....
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Congrats CP. Good job.
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cp418, you and I are so close in dx, age and treatment. I am over 9 years of the AIs and having increased cholesterol and slight decrease in bone density. I too am having very mixed feelings re completing the AIs. Please keep us posted re hair and cholesterol. Good luck.
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Most PCPs are not as familiar with side effects of these drugs, recommendations for how long we should remain on them, and things like Prolia being useful for decreasing bone mets. If you stop seeing MO, just be sure to be your own advocate with PCP
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My MO had initially advised me to do minimum 8 years anti-hormonal therapy total. I actually did complete 10 years of treatment when I include briefly on Tamoxifen but mainly Letrozole. He said there is not enough data for patients like me yet - that it will be available in another 5 years or more. So he felt not enough information for long term use and side effects - all unknowns.
I had developed osteopenia by year 3 and have been on twice yearly Zometa infusions then recently switched to Prolia. I've been managing my elevated cholesterol and BP with diet, exercise and supplements which I will strictly continue. My PCP had been monitoring those symptoms and had mentioned "drugs" but I refused as maybe due to Letrozole. So hope for improvements there.
KBeee - I totally agree with you. It is SO frustrating how we are now "turned loose" back to our PCP. We must always continue to be informed of latest breast cancer treatments and information because our PCP certainly cannot be. It actually angers me that this may be driven by the insurance industry dictating our care instead of our doctors. Previously I was able to get yearly dexa scan because I was on an AI and had osteopenia. Now I am denied for every 2 years instead - but I managed to ask MO about getting my Prolia in June 2017. PCP does not administer Prolia in his office as I would have to go to the hospital for it.
If more information comes out in the future I can always pursue an AI again. So far, I missed 3 doses and maybe it's in my head - but my body aches are less.
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Chloesmom - what is a laser cap? My hair never came back as thick as it was before , after chemo - 4 years plus on AIs. What is a laser cap? Is there any hope once off AI's to have it come back? I've always blamed on chemo, but apparently it has been the AIs the whole time. I do have curly hair, which helps, do the curls can fold over and cover the barish scalp, but not ideal. It's not as bad that other's notice, but I do!
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How many years have you been on AI's BB? Does your MO think it might come back once off AI's??
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BB
if ER/PR positive BC's reoccurrence increases or decreases after 5 years. She said the risk stays the same throughout your life.
I read recently that risk drops for recurrence after 5 years, but there is always a life time risk thereafter with er+ having having a slightly higher risk rate after 5 years than er-. It's so hard to know where the truth lies as there seems to be many opinions.
I too find that my hair has noticeable thinned, and I am unsure if this is because of the chemo or AI's, but it's very upsetting. On my crown is thinnest. I will be 5 years on Letrozole next year and then onto Tamox for 5 years and I am hoping the hair doesn't worsen.
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There is always a risk of developing bc even for those who never had the disease. What we really need is an effective treatment if and when it comes back.
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Capillus makes the hat. I wear it every other day for 30 min I got the one with the most lasers. It's a big investment but I'm hopeful as have 1/3 the hair I did last year
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Thanks Chloesmom - before I saw your reply I just ran into this laser cap thing on the web. Now I must know all about it! And most of all if it works!
I found the Clinical Trial for the "handi-dome Capillus."
I see they have 3 models, ranging from $799 to $3000. Is the difference in how long one must wear, or is the $3000 more effective, period? Can I ask you which one you purchased and why?
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On the topic of hair thinning and AIs - over a year ago, I wrote to Astra Zeneca (manufacturers of Arimidex) and Macmillan (because I was given their factsheet about anastrozole when it was prescribed Anastrozole - Macmillan. They state: some women notice that their hair becomes thinner while taking anastrozole. Your hair will get thicker after treatment finishes).
I wrote to them to ask for the studies / evidence for the statement that hair will get thicker post-treatment or any information on this side-effect. Neither of them replied.
I did not have chemo so my hair-thinning is entirely due to anastrozole. Formerly thick, coarse and curly, each hair is now baby fine and continues to thin, particularly over the crown. The daily amount of shedding is distressing - it seems amazing I have any left at all. I've been on anastrozole for 32 months. I take a high dose of biotin every day - I have no idea if it is effective and it is not approved by MO.
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The top one. Wanted the most diodes for the most effect!
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BB- that is so depressing! I was using Rogaine (for women) early on, but stopped. So now it has been 3 years. I saw no results with the Rogaine, btw.
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For the record, my hair was always been on the fine "ish" side, but I haven't noticed it getting any finer. Just less of it.
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I have wondered if your family has men who experience male-pattern baldness, which I understand is genetically determined, then, as a woman taking an aromatase inhibitor, you might be more likely to experience hair thinning / loss.
The men on the maternal side of my family - grandfather, uncle, brothers - have all gone bald so perhaps now that I have no / little aromatase converting my androgens to oestrogen, I'm getting it too. Just a thought - I have found no research on this AI side-effect.
Unless there is very compelling evidence to do 10 years of an AI, this is one of the side-effects that will make me stop at 5, if I make it that far.
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starwoman - yes, the men in my family balding, though more so on paternal side. Without any scientific knowlege to back up what you've said, i have felt the same way
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I saw my onc at the end of October. We discussed at length continuing on Arimidex or stopping, since I had been on tamoxifen for 2.5 years and Arimidex for the same. He mentioned that there is a small benefit to continuing, both in contralateral and distant recurrence. He aso said that small benefit needs to be weighed with bone and potential heart issues due to the lack of estrogen. I asked if I could take a 3 month break to see how things were different and then decide and he was fine with that.
It's been just over 2 months.
Pros...two trigger finger problems gone. Feels like a fog is lifted from my brain. More energy. hardly any hot flashes, de quervains is better but the cortisone shot a year ago helped with that a lot
Cons...still can't get to sleep, havent noticed hair thickening, but it wasnt terrible. I've always had fine hair.
I do get Prolia shots as my density had dropped a few years ago. Newest test measured ok, but my doc says to continue, so I am good with that. No side effects that I know of.
I will take the rest of this month to decide, but I am guessing I will probably start back up.
Either from my night of duckpin bowling two weeks ago, or the two doses of Levoquin I took for continued bronchitis, I developed horrendous heel pain. So far they are treating it as plantar fascitis as that is the easiest place to start. I'd like to get it under control before I start back on an AI again.
Interesting to read your comments on eyebrows and eyelashes. I never had great eyelashes. Still dont but they seem skimpier. Eyebrows are terrible. Don't need to wax in between them at all, but some of them grow in weird directions. And I haven't had a lot of body hair come back either. Rarely need to shave my legs.
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I did 9 years of Arimidex and stopped about three weeks ago. Still having trouble sleeping and still have not flashes at night.
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I've been having trouble sleeping too after stopping Femara recently (almost 10 years). So I'm taking melatonin at night to see if it will help. It seemed taking Femara at night time had helped me sleep.
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Thanks for keeping this topic going ladies, it certainly helps us all to read posts from others experiencing similar decisions that we have to make as I have found the Drs really leave the decision to the patient, when to change or stop treatments.
I started this post back in 2013 as here in Australia there did not appear to be too much information available with regard to taking aromatase inhibitors past the standard 5 years. I am nearly up to 9 years of taking Femara, and am now at the stage they are suggesting I go onto Tamoxifen due to the amount of bone loss I have suffered in the last few years. At this stage I am hanging off on changing to Tam as from all I have read, it suggests the AI's are slightly better with regard to recurrence, so I guess I am walking a fine line as to when I decide to stop, however I want to continue it, but am also fearful of the damage it is doing to my bones.
Although many of us are suffering from all the side affects that the drug causes it is also good to hear that they are keeping recurrences at bay for a lot of us.
regards Ched
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Thoughts? I see my MO tomorrow, and as I am nearing 5 years on AIs, the topic under discussion is whether or not to continue another 5 years. I'm going to ask for the BCI to help decide. Not sure if his office uses this or if my insurance pays for it. BCBS HMO So far nothing we've asked has been denied at the first request.
Based on a 30 oncotype score and 40% Ki67, as well as very low PR+ and very high ER+, I expect I would be both high risk and high benefit, unless node involvement is part of the equation (don't think so). With my family history and current excellent health, I could live another 30 + years. My mom could easily reach 100 with her current health and parents' history.
My worst AI SEs are dry vaginal area and chemo brain, but the latter could also be my stressful job. Still I once took a 2 month break early on and felt the high of estrogen rushing back into my body. My bone density is now steadily going down. I have osteopenia, but not yet so close to osteoporosis for drugs. Another five years at this rate will reach osteoporosis though.
For those of you who have had the BCI test and gotten the two high scores, what was the % reduction for your actual benefit? Is it 28-30%. This would take me from 12% risk of distant recurrence to about 8%. Is it worth the 4%? What are MOs guessing past 10 years?
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The moderators posted this very helpful link. http://www.breastcancer.org/research-news/ai-use-m...
It really is about an individual's risk level. My dx date 2006 was prior to all the newer genetic testing which was not allowed for node positive patients. So based upon 1/18 positive node, Ki67 20% and ER/PR 100% positive my 2nd oncologist advised me to do minimal 8 years of anti-hormonal treatments. Osteopenia has been a chronic issue since year 2 - so I had Zometa infusions and now Prolia injections. I just want to mention that the Prolia injections are far easier with minimal discomfort afterwards. I feel I will get greater benefit from Prolia after having tried Zometa after 8 total infusions at 2 infusions per year. It was time for me to try a different bone treatment.
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Thanks. If I'd had positive nodes, I'd have no hesitancy to continue AIs.
cp418, I think you posted this article and it is good info also. I just wish they would separate out Luminal B by HER2- and HER2+. You know they can tease out this information.
The prognostic value of node status in different breast cancer subtypes
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