How Many are doing 10 years on Aromatase Inhibitors
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ruthbru, this is many months after the fact but thanks for posting that info (from the Johns Hopkins website) on ways to reduce the risk of recurrence. I've seen some of that info before, but it's a great reminder and nice to have it all on one place. And it's the first time I've seen the phrase "take care of yourself emotionally." To see it listed as the very first thing is profound. Great reminder. (here's the link for others who may have missed it)
http://www.hopkinsmedicine.org/avon_foundation_breast_center/treatments_services/survivor_care/reducing_recurrence.html
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cp418, so glad you have added to this thread and are looking at the studies and making choices. (Thanks so much for all of the research articles that you add to this website.) My dx is similar to yours and I am hoping to do at least 7 years, trying for 10 years. Also, just contacted my onc to get another RX for real Arimidex as the generic makes me nauseated and kills my appetite.
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You are welcome, peggy.
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Hi all. I am now faced with this choice of continuing on Arimidex or not. I have spent the last couple of days reading all of the past posts and it looks like we are all up against the same thing...trying to make a decision without any definite knowledge one way or the other.
I was on tam for 1 year and had many side effects. After having hyst/ooph, I was put on the arimidex and faired much better. Aches, pains, dryness, but nothing horrendous. I have now been on it for 5 years for a total of 6 years anti hormonals.
I will be having a bone density soon and that will probably be the deciding factor for me. I am nervous to go off of it given the aggressiveness and stage of my bc. However, I wonder what unmeasurable effects it has on my aging body. Like most of you, my onc was not much help as she has no info either.
Right now, I am leaning toward taking it one year at a time if my bone density is still okay.
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That sounds like a smart plan. Very frustrating when everyone is just shooting in the dark!
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How about going back to Tamoxifen, which wouldn't cause bone loss for you? The side effects may not be as bad since you have been on antihormonals for some time. My onc suggested this for me when I started having eye issues after taking Femara 4.5 years. I am Stage IV so have no choice, although I am NED, about a lifetime plan for antihormonals, if possible.
The SOLE study (Study on Letrozole extension) is still ongoing and I haven't been able to find any preliminary results.
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She did suggest going back to tamoxifen but I had more issues on it than I do on Arimidex. I guess I should consider it though, if my bone density is not good.
What eye issues did you have on femera?
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I've been on Femara 3-l/2 years (of 5). My oncologist recently said he might want me to just stay on it indefinitely. He said studies are showing that it is effective in reducing the risk for recurrence. I'm glad it's working. I do think it "aged" me somewhat; I'm achy, stiff, and my skin is dry. But hey, I'm 63, and thrilled to be cancer free, so no complaints!! I do think it took me longer than I expected to recover from chemotherapy (e.g., peripheral neuopathy started about the time chemo finished; toes are still numb and tingly; balance off because the brain uses those nerves in the feet for balance. My big toenails died after finishing chemo, and eventually fell of, but then died again, and fell of again; one is hopefully finally growning out now. I'm assuming if chemo caused those changes to the nail root, there were probably other similar changes to organs, skin, etc. Nevertheless, this year, 3 years after completing treatment, I feel younger and stronger than ever, even on Femara. So I'm happy. It's a small price to pay (and I'll keep trying to find some cream to rehydrate my skin and keep trying to increase stretching and exericse to counteract the aches!)
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I had posterior vitreous detachment and the vitreous had to be re-attached by laser.
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That does not sound pleasant. Is that something that is aggravated by the lack of estrogen?
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The procedure was done outpatient without anaesthesia. Having a root canal is more fun. Yes, it is the lack of estrogen. Could happen with Tamoxifen as well, I'm told. Maybe for this reason I am on low-dose Tamoxifen. But it is a rare side effect in any case.
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I was told the first two years are the worst for recurrence but I have also read and seen recurrence after ten years. ( For me) That makes sence to me because my surgeon said don't wait ten years to do things you want to do. I have been told I'm on Tamoxifen for ten years so how lucky am I (not). The way I see things, my two years are up this December so I think and hope I may have ten years in total cancer free. That would be amazing for me as my youngest daughter would then be 25 and able to stand on her own feet.
Everyday I think I must stay alive till my youngest is 25 it's what keeps me going. I have given up booze ( not good if your ER+ ) eating organic food ( so expensive) I have always kept my weight down and walk an hour a day. Doing all these things help but in the back of my mind I still think if it's going to happen it will.
I want to sell my house and move into a small cottage in the Lake District. My youngest daughter has three years till she goes to Uni or work. I know if I pass away my other two daughters will look after the youngest they are 17 and 25. Does anyone else think of these things.0 -
ali68 from what I have read yes the first 2-3 years are the highest risk for recurrence. If you are hormone positve your risk goes down substantially after year 3. Even higher if you are hormone negative
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Hi lago, thanks for reply.
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ali I had that backwards. FIxed my post.
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Ali, I think of these things all the time. For me it is grandchildren. I had a friend whose first grandchild was born in the same hospital where she was dying. She got to meet her the day before her death. It just breaks my heart.
Re moving...We lived in the same house on a farm for 35 years but always dreamed of being by water. Well, this year we made the move. It was a lot of work but boy was it worth it. I knew that I could not wait to do it if I wanted to be well enough to enjoy it. My advice...take the plunge.
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Iago, what was backward about your post? Which way is it really?
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Lisa I edited it 2 days ago so the post reads properly now.
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Hi, all. otter here. I've been away a really long time, for which I apologize (while acknowledging that some readers enjoyed the silence).
I hit my 5-year mark on Arimidex/anastrozole this past June. I had a recheck with my med onco a few weeks before that, and, as expected, we talked about stopping after 5 years vs. continuing for ... who knows? And, that was the bottom line: at this point, nobody really knows if staying on an AI longer than 5 years will be of benefit like with tamoxifen.
My onco surprised me. I had a Stage I, grade 2 tumor (no positive nodes); and I thought she would leave the decision up to me. I had decided ahead of time that I would suggest we split the difference -- not stop at 5 years, but not continue for 10.
Well, she said she wanted me to continue "for at least another year or two...maybe not for 10 years total, but probably for 7 or so." Split the difference. Huh. She had been hoping for results that would show whether extended treatment with an AI was beneficial, but there aren't results for anything except tamoxifen. She said if my tumor had been "less aggressive," she would suggest I stop at 5 years, but my tumor "was not less aggressive." She specifically reminded me that my Oncotype DX score was 26, which is "not low-risk."
So, I'm still on Arimidex/anastrozole, until further notice.
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Otter: Thanks for the info. I am similar to you, except mine was grade 3 and my Onc. Dx score was 28. I finished my first year two months ago. Ugh. So long I keep moving, I can keep the oil can away from my joints.
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Right now, it is just a guess & oncologists have different hunches about it. I was only mildly estrogen positive, and that plays into the decision also (in my case to go off after 5 years). I surely hope something definitive will come out soon!
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Hi Otter and All,
I check this thread from time to time, as I consider what to do in the future, as I am ER+/PR-/Herz- like the rest of us. I am 3 years into the AI. (yeah!) So here is my question: after 5 years on AI, why not switch to Tamoxifen? I have seen some hint that switching from one to the other reduces the overall toxicity of each drug's cumulative effects? What do you all think?
Best, Beau
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My first onco told me that I will have to take Femara for 10 years because my cancer is slow growing. During my last visit with 2nd onco ( diff state ) she mentioned that she wants to switch me to Tamixofen in Dec ( after 5 yrs with Femara). Lately I have been anxious about this switch because I believe Femara is the primary reason I dont have any recurrence. Anybody got any recurrence after switching from AI to Tamox?
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My first onco told me that I will have to take Femara for 10 years because my cancer is slow growing. During my last visit with 2nd onco ( diff state ) she mentioned that she wants to switch me to Tamixofen in Dec ( after 5 yrs with Femara). Lately I have been anxious about this switch because I believe Femara is the primary reason I dont have any recurrence. Anybody got any recurrence after switching from AI to Tamox?
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Irsreyes - what about asking your asking your onc to perform the screening test to see if you can metabolize Tamoxifen? Do some research to find out the test name but I recall older posts discussing it. If you are poor metabolizer of this medication it would give you a reason not ot switch - likewise, if your results is good then it would better help you decide to use it as another option. Like you said I would not feel comfortable blindly swapping drugs unless I had more information that the 2nd drug would be helpful.
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I have been on Femara, then Arimidex, than back to Femara for 2 years now. I was osteopenic, but stable, prior to BC diagnosis and have had bone density tests done periodically for 10 years due to a hyst/ooph at the age of 45. I had one done the same day as the mammo/US that led to diagnosis, so I have a good pre-treatment baseline. After treatment and 6 months of Femara I had demonstrated loss at every measurement point. I was started on Prolia by my onc and have had four injections so far, every six months. I just had a bone density done last week so I am very curious about the results but the report has not yet been received by my onc. If the decision were up to me I think I would like to stay on an AI for the five years and then switch to Tamoxifen, as I was highly ER+ and don't want abandon hormonal therapy, but not sure I can subject myself to the AI SE longer than 5 years. The metabolizing test for Tamoxifen is described in the attached link, there is some controversy surrounding its reliability:
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Thanks CP418 & Specialk for your input. At this point I plan to continue taking Femara ( an onco said in this topic that AI is better if there are lots of positive nodes ). My new onco did not mention any significant benefits to switching to Tamox.
I had 5 Zometa IV from my ist onco & my new onco is giving me yearly Zometa shots.
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I can't possibly stay on AIs for 5 yrs. I've been on all 3 during this 13 mos period post chemo and I am giving up. Too much pain. Beginning to feel limited. So I am taking 2 week break and starting Tamoxifen. 4 days off, waking at 3:30 am with hip, back, leg pain. Sick of it. I was oncotype 32 grade 3, but only 8 mm and no nodes.
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And you did chemo, which should give you some reassurance.
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For the question, why not switch to Tamoxifen? My onc gave me a choice of staying on Arimidex or switching to Tamoxifen.
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