How Many are doing 10 years on Aromatase Inhibitors
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Hi Pip,
Thanks for mentioning that you too have disc problems. I agree, the discs problems are not necessarily caused by Ais, but now that I have them, the AIs are exacerbating the problem - we are going through menopause at warp speed - good with respect to reducing chances of recurrence, but bad for bone health, etc. My basic concern is that I am starting with a know problem - herniated disc, that is getting worse and at an accelerated rate due to the AIs. I am not going to go off AI treatment ahead of schedule, but I may consider switching to tamoxifen because my particular set of risks might make switching from an AI to Tamox a better choice.
My major hesitation in moving to Tamox now is that I PR - (highly ER + is the "good" news). There is some research that suggests that AIs are much better for PR- cancer. Hence, the query: should I stay on AI for 5 years or not? Or maybe longer, pending studies that are in process. All food for thought. I am currently waiting for latest results of Bone Density Scan, which will definitely play a part in my decision.
Hope you are are well!
Best,
Beau0 -
Have you gotten and Endocrinologist involved? A friend of mine, who already had osteoporosis did, and ended up taking Tamoxifin. I don't know what her PR status was though.
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Well I had my consult with my oncologist yesterday, after completing 6 years of aromatase inhibitor Femara. He confrimed that at this stage there is no evidence yet on AI's as to whether 5 or 10 years are better, however said that the evidence that 10 years is better for tamoxifen might also come in the same for AI's, however they don't know yet.
He considered that it was OK for me to continue on taking the Femara into the 7th year, as he feels it will still help me with regard to helping ward off a possible recurrence, but left the final decision up to me. He did a benchmark bone density before starting Femara, and orders a test every 2 years. He has also asked me to go and get another Vitamin D blood test. He likes me to do it every 12 months.
Ched
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Hi Aussieched,
Your oncologist seems to think the same way that mine does.
I had reached my 5 years of taking generic Aromasin in April 2013.
I wanted to continue taking it until there is evidence as to whether 10 years would be better and she agreed, since I was having hardly any problems.
Granted, my bones have been weaken by the AI, but Prolia shots 2 times a year as well as regularly working out at Curves seem to have reversed that. I am due for another DEXA in February to further monitor them. Like you, I also get annual vitamin D blood work.
I am sooo happy that my oncologist is willing to work with me. She keeps up with the latest studies, so I am confident that together, we can make good decisions.
Hugs,
Ann
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This is my first time here --I am 78 and had stg 1 no lymph involvement - the path showed a high KI (?) (normal is up to 30) which meant it could re occur and mine was 31 I had lumpectomy ff by radiation and put on femara for 5 yrs I am now at 4 1/2 yrs and the side effects have been awful -I had arthritis before but now need a cane -of course all the normal menopause stuff ( I did that before too) :-))my blood sugar is creeping up -my doc gave me a 14 day vacation and he did that last year also--I almost immediately had less back pain and could sleep 5 hrs straight -- so many small things like a hip -chronic pain -pain at night determined to be a tight muscle is soo much better -- I just wonder , with the best they can say is --staying on it for 5 yrs gives you a 12 % chance of no reoccurance --then what diff does it make if I come off it now -- my quality of life has really gone down and I have no way to know if at my age I would be like this or if its all femara - - really for 6 more months ? is it worth it? TYVM
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If I were 78 and it was really interfering with my QOL, I would absolutely quit. You are Stage I, which means your chance of recurrence was low to start out with, and you have completed the majority of the course of treatment. My opinion would be to go off, and then go have some fun!
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2Jacq,
I agree with ruthbru. I saw my oncologist today. I've just finished five years on letrozole (femara). She took me off it without hesitation. My cancer was small (1.2 cm), node negative, HER-2+, and stage 1. I have lots of aches and pains (due to neuropathy, arthritis, and possibly letrozole), and was happy to stop the drug, but only if she felt there no benefit to continuing--I'd gladly put up with aches and pains if it meant I was reducing the chance of a recurrence. But she felt that, with my risk profile, there was no reason to keeping me on the drug beyond the standard five years.
Of course you have to do what you feel is best for you and your health. But with what you've said, I'd make the case with my dr. that the negative SEs outweigh the benefits, especially after four and a half years of treatment. We all want the peace of mind to enjoy our days, and constant pain makes that hard to do.
Good luck, and I hope you feel better! And yes, go have some fun!
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2Jacq, I agree with the above posts. I have had so many problems with the Femara, but if I was 78 I would have stopped treatment at 4.5 years particularly as you had a good prognosis. Unfortunately I am 20 years younger, so felt that I had to continue on, to try and give myself the best chance of putting off an early recurrence. I think you deserve to have some quality of life now, so go and enjoy yourself.
Ched
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2jac, I am with the others, get off the stupid pills and go dancing. Have some champagne and cigars while you are at it
Keeping you on femara under those circumstances seems like complete overkill.0 -
I am the same age as you and I quit Aromasin because of the debilitating side effects. I think you have hung in there long enough! There is a Danish study that found that women over 70 do NOT benefit from the hormonals. So due the side effects I had: constant diarrhea, increase in atrial fibrillation, severe depression, sleep problems and the worst of all: Such bad bone and muscle pain that it hurt to walk I quit after a few months of misery.
I admire you for taking the stuff as long as you have been!
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Thank you sooo much for your kindness in replying -- you all have been wonderful-I read recently that women over 70 are being "overtreated " for B/C they receive no benefit from radiation therapy and can--- suffer heart probs I think soon it will be AI's that they negate 2 --- I am feeling --inch by inch better off the meds --where I used to hate going to bed at night cus I couldnt sleep -now it is a friendly spot for me --TYVM for giving me your support -- hugs :-)
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Catch up on your sleep and then go a fabulous vacation (and check in and tell us some of the fun things that you are doing!).
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I have posted this before, sorry for those who have seen it already. This is the study I mentioned in the above post.
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Thanks for that article -- I go to a gym --work out in the pool a few days a week and will pass that study around -- everyone to their own choices -- medicine changes so quickly now and so much in the future is amazing ! Another very cold day here in the Northeast US-----:-)) Have a good day!
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Same to you. Hope you can stay warm!
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Well Ladies ! Yesterday was our 53 rd wedding anniversary----- I celebrated --:-) I called my onco - said I had enough and he said -you can go off -will see you at reg visit -- took my cane and went out with a G/F to shop for a gown for my gr daughters wedding in May and then to lunch (if you notice that hubby is missing he has a 3 day a wk retirement job LOL ) had some wine and a lot of giggles, hubby came home about 5 with champagne and a wonderful card --we will celebrate this coming weekend -- we r going to a Melting Pot rest. in a nearby town --ever been to one of those ? yummy! --- you all are great to talk to -- :-)))
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congrats, sounds like you went with your gut, life is only as good as you make it, enjoy your hubs
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Whoo Hoo! Enjoy!
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Congrats to those who are finished. Good luck to those continuing on AI's. I just went to my 6 month onc visit with the question of how long. I've already done 2.5 years on tamoxifen and one on Femara. She now says 'at least' five years total on Femara, perhaps more. I consider my onc to be very cutting edge re latest research and I'm not sure if she feels this way due to new info or because of something about my specific situation. Either way, though I'm not loving Femara, I can deal with the SE's and am glad that we have good meds out there.
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Hi All,
I saw my oncologist this week (and got my latest bone density test results) so I am reporting in. I am only 3 years into AI at this point but he indicated that he thinks by the time I reach five years it will likely be 10
So, like, sgreenarch, that is my onc's crystal ball). I am getting my mind around that possibility. Questions still on my mind are how much my PR - status factors in (hope that there will be more info on this soon) as well as how well my bones hold up. I also hope that we will get some info on whether a switching strategy between AIs and tamoxifen might lower overall toxicity, although I imagine this will depend on our individual situations. Ruthbru, thanks so much for your suggestion about an Endocrinolgist. My bone density is still good ( some loss in past two years but nowhere near as bad as the first year post chemo, etc) so I will wait a bit longer before I set up appointment. Definitely on my list of things to do! lol
Hope everyone is having a good day!
Best,
Beau
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Hello. I'm checking back in too. I've been on Arimidex for a little over five years and my oncologist wants to keep me on for at least another year to see if any AI studies show the same results as Tamox.. I'm a little hesitant because I was diagnosed as having osteoporosis after 4 years. I'm taking Reclast once a year (had two injections so far), but hate putting all these meds into me (happy they are working though!). I don't have any day to day side effects, so I guess I'm on an AI for awhile longer. I'll be having my first Dexa after two Reclast injections soon. Thanks for all the posts. It helps to know I'm not alone.
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Soooo I have been here -posted about a month ago --I stopped my femara (letrozole) at Christmas time and went to onco for 6 mo, routine visit-- he said everything fine and felt it was fine to stop med at the 4 1/2 mark ( I am 78 and so many se's}--so when I saw him I had the usual blood work and today they called and said I have to repeat tumor markers -I didnt ask the name of it but they said anything 38 or under was normal and mine had gone to 45 ====I have to go back and this time I should fast as there are somethings that could affect it --is this common --I am really really worried----------
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deep breath time, hoping that the fasting before will make the numbers so the right thing!!
stay busy for now, I like to do some little things to be nice to myself doing periods like this
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Thank you --I guess many have had "call backs" I am feeling soo much better since the letrozole is stopped and my only granddaughter has her wedding in June and I just want to stay well-----its scarey thats all
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2Jacq my MO doesn't even do tumor markers. She feels they are unreliable as do many others. You're a few years older than my mother
Hope it's just a fluke
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Well thats a good thing to hear --I hope your Mom is doing really good and its nice to know --ty for your input --Hi to Mom :-))
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Yes, hugs and glad you feel better off the femara... and let's hope the tests are fine!!!
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My mom is doing great. No breast cancer for her or anyone else in my family. I've always been special
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Hi 2Jacq,
I agree with the others who've posted--it could be anything that set those numbers off. I've never had tumor markers done since my dx in 2008.
Take a deep breath, have a glass of wine, watch a silly movie, or do whatever takes your mind off annoying things. Check back in here until your mind is at ease!
Sending healthy thoughts.
Ann
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My onc doesn't do tumor markers either.
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