How Many are doing 10 years on Aromatase Inhibitors
Comments
-
-
voracious, I sent my MO this information and he came back saying that there is a risk of osteoporosis and high cholesterol, which I already have, if you stay on it. He also said in all caps-NO PROLONGED LIFE. Well, alrighty then! With the sneaky ILC, I guess I pray for the best.
Take care all. Robin
0 -
I started Letrozole this week for 10 years. My recurrence rate was high. I did chemo to lower it. I'm also starting Zometa infusions on December 30th. I'll have those every 6 months for 2 years.
0 -
stick with it jinx! you are doing great and it's a long hall. the numbers are for sticking with the meds!
0 -
Just finished my 5 years on letrozole....looks like it going to be another 5 years according to my BCI report. Also, doc wants me to see a rheumatologist for my osteoporosis.
0 -
Nash, would you mind sharing your score on the BCI? I also will be continuing for another 5 years as my score was high (7) and indicated high benefit. There are not very many of us, so I am curious what your report said.0
-
Peregrinelady....I just left a msg for my doc to see what my score was. I'll let you know when I find out. I had a feeling I'd be on it another 5 years. My side effects have been minimal and I did have a grade 3.
0 -
Does anyone know if there are specific criteria for staying on AI's longer than 5 years? For example: stage, grade, age of patient... Is BCI the standard measuring tool for aiding in the decision making process?
0 -
Thanks, Nash. I am assuming it is 5 or higher since I think under 5 is considered low risk. Butterfly, I had micromets and a 2 cm tumor, so those could be factors. (Also 100%ER+). It could also be based on the genome of the tumor. I do know that my BCI report said that any positive nodes would put you in the high risk category. There are a couple of new tests now other than BCI, but I do not know which is considered the best one.0
-
Thank you for the information
0 -
Peregrinelady....My chance of reoccurrence between years 5 and 10 is 8.6% with a high benefit of continuing on the AI. So here's to another 5 years! I'm pretty fortunately that my side effects are minimal...except for bone loss which actually started before I was diagnosed with BC. There are days when I am a bit more achy than others but I try to stay active with yoga mostly and that seems to help.
0 -
Thanks, Nash. My % is 9.1, the highest I have seen so far. Aren’t I special? 😏 Anyway, it is good to see someone else with similar results. I agree that exercise helps and it is worth it to me to keep going. At least our numbers are clear cut. Some women receive “high risk, but no benefit” results.0
-
I'm a "high risk but no benefit" and it sucks. Makes for a very agonizing choice on whether to continue. But my docs got together and explained that the benefits of exercise and diet greatly outweighed the risks from continuing the meds. So I stopped.
0 -
lala, I am not high risk per say, but had ILC, the sneaky cancer that I found! Mammo didn’t catch it. So if taking letrozole, (Femara) for 5 years and now not taking it because “no prolonged life” as my MO put it, what was I doing it for in the first place?! False hope? Sometimes I wonder.
Robin
0 -
lala1... was there any specific foods you were told to avoid?
0 -
Nash54-- I have a BS and MO who are very practical which meshes perfectly with my personality and neither of them pushed me to avoid certain foods. It was more of a "drop 10 pounds" and "eat fruit every day". I am a terrible eater. I hate to cook and I like to say would be very happy if all my food came at me through a window.
I am probably about 15 pounds over what I'd like to be which would put into the normal category of a BMI. My doctors don't even really want me that low. They like women to have a few extra pounds when they are older (I'm 56 so I don't know how I feel about that!). And while I don't eat just crap, I do struggle to get in regular servings of fruits and veggies. I've learned to just eat a bowl of strawberries or grapes for dessert and my docs are very happy with that. I do exercise every day whether it's cardio, yoga and/or weights so I'm good there. I'm working on the 10 pounds and have about 6 to go (it's definitely a struggle since my hysterectomy). My docs tell me that exercise alone probably drops my risk of recurrence by about 35% and losing the 10 pounds would drop that by another 20%. And if I really cleaned up my diet they say my risk could drop by another 30%. All these numbers take me from a BCI score of 7.5% to about a 3% chance for recurrence so I'm trying. A 50% drop in risk is pretty much what Tamoxifen offered me! And without the SEs!0 -
4 yrs on AI after recurrence and hysterectomy/ ooph. Was almost 3 on Tamox but recurrence ( regional). 7th or 8th zometa last month (3 1/2 yrs)? Should be on Arimidex full 10 " or more" per onc. If I'm here to see son grow...alrighty then!
0 -
I've been on Femara for almost 7 years now. When I first began taking it, my oncologist said I'd be on it for 10 years since recent studies showed that taking it for 10 years rather than 5 years was particularly important for women with ILC. She explained that the risk of recurrence with ILC doesn't go down as much over time as the risk of recurrence with IDC does.
Since starting Femara, I have roving joint paint: I'll have a shoulder that aches for a month and it will go away, then my left hip will hurt for a month and go away, then my lower back aches for a month, etc. You get the idea. The good news is that, although I've had substantial bone density loss, I'm still only osteopenic, not osteoporotic. I find that regular exercise helps with all of it. I'm not one to get on a treadmill, but I have voluntarily taken care of a formerly abandoned 7 acre cemetery for 33 years. I work in the cemetery for at least a couple of hours every day of the year, collecting fallen limbs, planting trees, pruning, weeding, etc. If I miss a day, I'm more achy.
I assume I'll be on Femara for 10 years. I don't know if my oncologist plans for me to stop it then. I'll be 65 at the end of 10 years of Femara. Have any of your oncologists told you to continue your hormonal therapy indefinitely?
Update on March 3, 2020: At my oncology visit today, I asked my oncologist how long I am likely to stay on Femara. I noted that a study said 7 years of Femara may be just as good as 10 years. She immediately discounted that and said the study I was referring to was flawed. She said I'd be on Femara for at least 10 years.
0 -
I have to make a decision this year as to whether I'm going to continue with Anastrozole. Last year my MO told me that if it were her, she'd stop at 5 yrs. Right now I don't think I'll feel comfortable stopping next month. I'm leaning towards 7 yrs. The goal for now is to start exercising more and lose about 15 lbs. I'd like to get the BCI test but I'd have to pay for it out of pocket now that we have an HSA. It's a tough decision for sure!
0 -
Has anyone had their insurance company turn them down for this test?
My insurance company Blue Care Network turned me down. They said that it has been more than six months since my diagnosis. Early on my doctor told me that we needed to wait until closer to the five year mark to have this test done. Even the BCI website says you can have it closer to the five year mark. I have 6 months to go to finish 5 years of anti estrogen therapy.
0 -
Suz-Q, insurance companies will deny, deny, deny. I sometimes think all pre-approval requests are sent to a panel of chimpanzees whose only task is to click "no."
It could be that someone coded something the wrong way. You just need to appeal it. It's a pain in the patootie but worth it.
0 -
I started Tamoxifen in 2011 and switched over to Anastrozole a few years ago as I'd also been on Lupron shots for a bit and therefore post-menopausal. I recently had my yearly MO "visit" (basically I spoke to her over the phone, that's another topic...) and a comment was made that I'd get another bone density scan (I've only had one) next year as I'm finishing treatment then. This has already been on my mind a LOT, but I'm just wondering if i'm alone in feeling extra fearful of going off the medication? Has anyone been told they'll be on it past 10 years?
I have had many many unpleasant side effects from the AI but at the same time, lesser of two evils, and I feel better having taken the pills, which my original MO told me were almost more important than the rounds of chemo. I'm so scared to go off them !
0 -
Just curious, Breast Cancer Index websites says 95% of women with early stage BC don't benefit from an additional 5 years I'd endocrine therapy, so why should I even consider doing this test? I talked with my oncologist today and she said it was my choice to do more or go off of it. She said that if I had any positive lymph nodes then she would encourage me to do 5 more years. The tiny percentage of protection isn't worth the cost of my bone density loss. I haven't had any painful side effects since I started using Aromisin. I have had bone loss and vaginal atrophy, but I am 61 now. So who knows what to attribute those to.
0 -
Suz-Q, I am in that 5% unfortunately. I did have a larger tumor and micromets in one node, but my Oncotype was only 12. However, I fell into the high risk group on BCI. If I could stop, I definitely would, but am too nervous to risk it.0
-
All -
Just jumping in here. I'm Triple Positive, finishing chemo next week, then surgery. I'll have herceptin for a year. They have just started talking about AI to me. I'll probably need a few rounds of radiation first. I'm REALLY nervous about the side effects. Of course, in the group about doing well on AI - they are all over me to take them. But I am really leaning towards not. I see lots of you have started but are thinking about stopping. Anyone opted for NO AI? Or started and stopped quickly? Or done something with natural solutions? I just feel like the side effects are not worth it. Wanting to make a good decision, but I'm SO over feeling like crap and I want to feel normal again. And I read about all the AI stuff and feel like I will never feel like myself again. I was post menopausal before diagnosis.
KRis
0 -
wahoomama87....just my experience but I have not had any major side effects from AI. I am starting my sixth year on lextrozole. I'm continuing after 5 years because my BCI test score indicated High recurrence and High benefit from continuing. I too was post menopausal before starting...I think that probably was in my favor because I had already been through the menopausal symptoms.
0 -
Has anyone experienced any chest pains? I think my Lupron dosage (quarterly) may be too much for me..I think I might go back to monthly. Im also in it for the long haul 10 years.
Im very concerned for my heart though, my glucose and cholesterol levels are high Im overweight, Im prediabetiic and I need a change. Ive even thought about asking to switch to tamoxifen.
0 -
Jinx27, I had chest pain that turned out to be microvascular heart disease with lots of possible causes including lack of estrogen. I am much older than you (58) and had my ovaries removed, so I doubt this is the cause of your chest pain, but if you are concerned talk to your oncologist. Also, I have seen 5 years of AI and 5 years of Tamoxifen as a treatment plan. Usually, the Tamoxifen is first but I don’t see why it can’t be the other way around.0
-
Hi, for what it’s worth my experience has been mixed, but I’m good now. I initially didn’t have any symptoms (first 6mths), then quite significant hip pain. My bone density has held up thus far. I’ve been taking an AI now for 3 years. But now I’m fine, little to no side effects. I find it I eat well, and take curcumin, my side effects are negligible. I also found that taking the Femara brand (not the cheaper alternative) helps me too. Good luck with your decision.
0 -
Wahoomama87, I've been on letrozole 8 years this month. Like you, I was nervous about debilitating side effects, but with my Stage III inflammatory breast cancer, I was terrified of NOT taking an AI. I wanted to use any weapon I could find to beat back this monster.
The side effects I've experienced have been some slight hand stiffness when I clench and open my fist, and some slight body stiffness. My lady bits are aware there's no estrogen in my system as well. I was 56 when I started letrozole and almost 65 now, so some of the side effects might just be normal aging.
Please consider giving an AI a try at least. You might be like me, with minimal side effects and enormous cancer-prevention benefits. Best of luck--SB
0
