How Many are doing 10 years on Aromatase Inhibitors
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Musicgal--sorry you are going through all of this. Just wanted to point out the difference between a relative and absolute percentage reduction. If the probability of recurrence went from 6% to 3%, that *is* a 50% reduction--the probability of recurrence was cut in half. Maybe that's what your MO meant?
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yes, it's hard to know. estrogen positive tumors are slow growing... the extra years are to keep it coming back at 7-10 years which is still a risk. if your side effects outweigh the positives then its time to talk about quitting. Always good to get a second opinion from another oncologist as needed. these drugs can be a lifesaver but also ruin our quality of life. I will need to make that decision in 2 years. not so many physical side effects for me, but the mental side effects have been miserable. maybe soon we will have more info on what is going on in the body and needs. Best of luck to you making this decision.
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hello ladies
Just came from my ( been told last) appointment with my Onc. She feels that 8 years on tam is sufficient for me based on the latest studies coming out of the SABC that 8 years is as effective as 10. Based on this new data, the fact that I was lymph node neg and grade 3 pathology she’s telling me I can stop at 8 years which is in Feb 2020
I don’t know whether to be happy or scared but I’ll take it!!!
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Hi everyone. At my onc's suggestion, I took a vacation from exemestane in June to see whether the improvement in quality of life was enough to risk a small increased chance of recurrence. (I don't recall the exact %.) In other words, QoL vs more life.
She told me to take no more than a 6 month break. She also said that any improvements would probably occur by 3 months, with not much improvement afterwards. Tomorrow I see her to decide whether to stay off the AIs.
She is against the K___ test. Says it is not very reliable - results vary tremendously between labs, so not a good idea to make decisions based on that test.
My joint pain definitely improved, and pretty quickly. No more carpal tunnel, either. Knees are still bad, but that's arthritis that worsened over time. My brain is as bad as ever and I don't think my fatigue has improved. My hair is perhaps slightly thicker, but it isn't anywhere near as thick as it was prior to treatment. And I think I am steadier on my feet. I certainly stand up straighter!
Tomorrow I go see her again to make the decision. I might go back on, since the pain reduction was the only major improvement, and see if the pain returns. If it doesn't, I might as well take the blasted drug for another few years. Or I might say screw it and stay off the drug.
I find myself really discouraged, though. I really wanted to be my old self again, but I never will be. I mostly want my brain back. That isn't going to happen. All those things I've been blaming on the drug may be due to cancer and chemo - or maybe the AI damage is permanent. I doubt my onc will be able to tease those apart for me.
Serious question: Am I messed up to not feel grateful to her for treating me? I feel more anger that I have been so damaged, than gratefulness for being NED. I trust her and like her, but I am also angry. This is clearly better than being dead, of course. I don't recall ever being told that cancer and its treatments would damage me so much. But I clearly would have continued treatment anyway, so I suppose there wouldn't be any point in telling me the sequelae. Do I thank her? Do I express my disappointment? My anger?
She'd probably suggest therapy. :-) But even if I felt like trying that again, I can't afford it. (Yet another thing to thank cancer for.)
Thanks for listening.
P.S. Something odd happened soon after I quit exemestane. My hot flashes return full force off and on for a few weeks! Very strange. Then disappeared completely.
FOLLOW-UP: I’m going to get some genetic testing and the BCI test before deciding whether to go back on exemestane. She feels I’ve had too rough a time to go back on, but I said that if the tests show that I would have a strong benefit from the drug, I would probably go back on - even thought she said that the join pain would definitely return.
Thank you folks for letting me know that I am not alone.
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strong enough - you are certainly not messed up, I feel the same. Very blessed and grateful that I am here enjoying my family, friends and life. But yes, there are days I hate the cards I was dealt and what its done to my body (thinning hair/no boobs/facial discoloration from hormones/fatigue/joint pain blah blah blah I could go on!) its very normal
my ONC tells me I can go off at 8 years - I was hoping for POOF! you are back to your old self - my hair would grow back thicker, the tummy fat would melt away....ahhhh one can dream!!! sounds like I shouldn't set my expectations so high
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Hi All,
I remember seeing this forum a couple of years ago and thinking it would NEVER apply to me, lol. Well today my onc. said, "Enough." 5.5 years of letrozole and I'm done. And like many have said, I feel a mixture of relief and worry--there seem to be so many differing opinions and evidence! For tonight, however, I am going to choose to be relieved.
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I was able to go off Arimidex at about 7.5 years. My onc's decision must have been based on the latest studies coming out of the SABC that someone earlier in this thread referred to. He''s big on research and I trust him. I feel much better. I think I had extreme anxiety and that has gone away.
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StrongEnough - My MO and I are having the 'how long' discussion this fall. He told me last month that the BCI isn't considered as reliable for node+ cases as the EndoPredict (and that seems to be validated by my research); you might want to check that out with your MO.
I've been pretty stoic through the past 5 years but as I come within reach of 5 years and know that I'm probably only half way through my 'sentence' I'm really angry at being told to continue. I'd love to be able to quit next week without knowing that I was going against medical advice and would likely live to regret the decision - or at second guessing that decision. What it comes down to, in part, is that I really resent that not only do we not have better drugs to prevent recurrence but we also have less than robust tests to determine the benefit of continuing on endocrine therapy. It also thoroughly bugs me that our MOs and the research community really don't care - they think AIs are so great that there's no need to continue the search for anything better, and the side effects are so often downplayed.
I hope you get some useful information that you can live with.
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Has anyone had the Breast Cancer Index Test ran
My Oncologist had me get the test and it came back a 2.5% chance of late reoccurrence and it said Tamoxifen is of little benefit. This was the 2nd page. The first page was a higher number Of I believe 5.5 % but it dealt with year 0-5? Am I reading that correctly?
I am 100% ER & PR +. braca 1 and 2 negative with a strong family history of cancer including BC. (4 of us diagnosed with BC in 9 months time) I was 44 at diagnosis. Stage one Grade 2 IDC of 1.4 c. I had Onchotype Dx of 18, no chemo(though my new Oncologist says I should have had it) I had internal Brachytherapy Radiation.
I had I am 6 yrs out now.
I've had a hysterectomy, tried Armidex and Femara and the side effects were not good, so placed back on Tamoxifen.
My Oncologist says its up to me if I want to continue until year 10 on Tamoxifen.
He says that the Breast Cancer Index test is quite new so he is unsure of how many Oncologists are relying on it.
I am so conflicted so wondering if anyone else with stats similar to mine has tried that test?
I so do not like being the one to decide.
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Hopeful--not sure if this will help you but I've told myself that if my MO wants me to continue beyond five years (still four years away for me!), I'll at least take a break at that point. Maybe a month or so. I'm sure it won't make a difference long-term and at least it'd be something to look forward to.
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Ingerp, thank you. I really appreciate your suggestion, which is very similar to the decision/coping mechanism I arrived at a few months ago, which was to take a breather at this point. I told my MO that I wanted a break at 5 years - at least 3 months and he was fine with 3 months.
(There are studies with women doing the 2nd five years as 3 months off, 9 on for 4 years and the 10th year as a full year on. So far there is a non-statistically significant difference in outcomes. I might go that way but really, in my heart of hearts, I just want to be done with it, even though I realize that’s not in the cards at this time.)
I’m also considering switching to tamoxifen to see what that’s like. We’ll see.
At any rate, I have 5 more little pills in the bottle and then I am FREEfor the next 3 months. I am practically counting down the hours.
It really helps to have some moral support along the way, Ingerp. Thanks for reaching out. I hope you’ll join my virtual party in a few days:)
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Oh honey--hang in there. So tantalizingly close. Please come back and let us know if you notice any changes during your break.
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I can relate to everything you said! I had the BCI test recently-I came out high risk of recurrence (>10%) but no benefit of extended hormonal treatment. I've been on a total of 5 years (tamoxifen and have tried all 3 AI's currently on Femara). I'm going to continue until the end of the year and then take a 3 month break. If I feel great (not counting on it!) I'll have to decide what to do-if no change we decided (me and my oncologist) that I would try to do 2 more years to bring me to over 7 and then be done. It scares me to stop but also scares me to continue and have all of the side effects which negatively impact me. No easy straightforward answers unfortunately.
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Ndgrrl, you might want to check out the BCI threads. Just type in BCI in the search bar. There should be a couple of them with the information you are looking for.0
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I'm at 4.5yrs on Exemestane, oopherectomy at 44 was my 4th surgery of 2015. A small dose of Effexor has worked wonders for my flashes. I'm not consciously aware of any side effects I can pin right to it. I would like to know if it makes a difference too. Am I just aging and bones ache with that, am I just not as concerned with some things anymore and not suffering brain fog, did sex really matter to me before....
I chose not to do chemo. I was at an intermediate high onco dx score and there was still no way to prove it would be a substantial benefit. Mammaprint showed slight benefit too but no proof. BRAC negative, I don't have kids, maybe that made it easier for me to make that choice. It was easier to make the awful decision to have them take my full right breast than if I should do chemo. My sentinel was negative, and since everything was removed I felt that was my best choice, even though all 3 oncologist recommended chemo. It almost seemed to be their "better safe than sorry" prescription.
I have been tested as pre-osteopenic, 2yrs ago. Have my bone density scan and mammo on Lefty Wednesday. Always unnerving, I only had 2 mammos on 2 different machines before being diagnosed, barely 2a. My bloodwork shows my vitamin D levels are half what they were before this whole pile of crap.
Asked my Onc about going off of it at my last appt and she flat out said if it comes back it's stage 4. Now, I know that had to have come up at the time I was going through the early stage motions of testing and decisions and surgeries and insurance and appointments...but it was just so out there the way she said it. I went to 3 different oncologists and she is the one I was most comfortable with, even though an hour drive vs 15 minutes - St. Luke's. Maybe the reason I chose her was that she says it the way it is. It does make me feel better reading that some of you are "taking a break" and seeing if it makes a difference. It doesn't make me feel better reading that it's not going to restore me to the way I was. I didn't expect it, but it's another reality check and I am sorry for this, for all of us.
This forum has been one I discovered by googling everything I could about my situation, back when I was diagnosed, and has always helped me find my footing, so thank you to all you ladies. Riverhorse is a name I remember, I hope she is still with us.
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Anijo, I am taking tamoxifen instead of other AI's because I have osteoporosis. Like you, my oncotype score is medium high and I opted out of chemo.
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I stopped aromatase inhibitors in June after 7 years. Was worried what my Onco would say when I saw him yesterday. I was sure he would try to get me to take yet another Ai. After I explained to him how bad the se's got and told him of my research of ASCO guidelines, which included 2 studies that said 7 years as good as 10. (which Of course he already knew about) he said stopping after 7 years sounded reasonable to him. So I am officially done with treatment after a total of 8 years including surgeries, radiation, chemo, targeted therapy and Ai's. I have improved dramatically and I'm so happy to be moving on to the next chapter with my Onco's ok.
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Congratulations, GrandmaV!
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Thank you MissouriCatLady
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GrandmaV—that’s wonderful news. I’m sure many are curious if you noticed a change in SEs after you stopped.
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I notice a couple of days ago that after less than two weeks off of Femara my “trigger fingers“ are almost completely normal. I did not expect that to happen so quickly, if at all, and psychologically I feel so much lighter and so much more like myself.
I suspect it’s going to be awfully difficult to go back on it in January
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Ingerp - Thank you. I've improved so much in the 4 months since stopping Ai's. The improvements have been gradual and continue to get better. In June my knees were so swollen and painful I was walking with a cane and considering getting a walker or wheelchair. My back and hips were painful. My hands, especially my thumbs were swollen and painful. I had no stamina, had brain fog, and depression. The first things to improve was the brain fog and depression. It took at least 5 weeks before I began to notice improvement in joints. Now my hands are pain free. My knees are still sore, but the swelling is nearly gone. I can walk without a cane, walk through a grocery store instead of riding, I can walk up a few stairs without help. I can get up from a chair without pushing off with my hands. It's amazing at how much better I feel. I think I will continue to feel better in the months to come. Thank you to everyone for the support I have found here.
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Good to hear, GrandmaV
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Good for you Grandma V ... you give me hope.
I’m only 2.5 years into this BC maze. My MO said we’ll evaluate when I hit the 5 year mark. My joint pain is manageable now but my already thin hair is thinning. It’s always something,0 -
Im a younger patient, 26 at diagnosis, now 31. Ive had double mx plus reconstruction, bridged with Tamoxifen and then transitioned into Arimidex and Lupron. Most oncologist would say in my situation 10 years is almost a given. The goal is to prolong life "cancer free" as much as possible. Also of us with an estrogen positive diagnosis have a risk of recurrence past 10 years, there is a lot of research that shows ER+PR+ cancer can come back even 15 years later.
However, we all know cancer research is always changing, I suspect there will be much progress in the future!
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GrandaV I just passed the 5 year mark and my MO said I can stop taking Femara!!! I am a little bit scared because I feel it is my security blanket. I had very few side effects from this drug. But Arimedex and Aromisin almost put me over the ledge. I was also told that Femara is the best AI for ILC. My MO said they don’t have enough evidence that more than 5 years does any more. I have neuropathy in my hands and didn’t have chemo. I think it was the Femara.
I have struggled with high cholesterol and have used a statin way before BC. It was hard to keep it down even with the statin. Maybe it will be lower like pre-cancer. Robi
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Robinblessed - Congratulations! That's great news.
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I have been on Tamoxifen 6. 5 years. I will meet with my MO in the new year to get her current recommendation of how long to continue. Just as some of you have expressed I'd also really like a break to see what it's like to not be on this drug- to see what my "new normal" could be.
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I haven't begun yet, but my MO told me it would be 10 years.
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I did Tamoxifen for 10 years. Went off last spring. Quite surprised to get my hot flashe’s back. Other than that I have been feeling fine no longer tired out and asleep bye 9
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