How Many are doing 10 years on Aromatase Inhibitors
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My hair was getting thinner by the month and the hairdresser was alarmed
6 months ago i got a Capillus laser cap. It was $$$ but my hair is back. Filling in at temples where it had receeded too with letrozole They cost $800, $2000 or $3000 depending on how many lasers. I was desperate and got the top model. It was taking a cruise or getting my hair back. Took 4 months to grow in but happy i did it
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Same here Chloesmom! I was going to look you up. Do you have a before picture?? And you can you remind us where you are on the AI cycle - finished? Just starting? Any chemo? Congrats!
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I finished chemo CT on in April 2015. Took anastrozoke April, May, armidex June, and letrozole since July 2015. Hair loss got bad between August and November of 2016. Started cap the first of December. Wearing it right now! I will have to find before pix and post them soon
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Thanks Chloesmom - Look forward to your pre laser pictures and so glad it is working for you! $3000 or waiting to get off AIs in August - hmmm. My MO seems to think my hair will get thicker on top when off the hormone blockers.
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This came out today in Cure magazine.
http://www.curetoday.com/articles/discussing-longt...
One thing a I forgot to mention, that I was as happy or happier about than my hair, is that my eyebrows are finally thickening up since I quit the AIs. They'd thinned out so much I had to draw them on. Now they still need some touching up if I'm putting on makeup and dressing to go out, but otherwise, they are ok as is. It's so nice to have eyebrows again.
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Yesterday I went to my annual MO visit. He said that when it's close to the five year mark re: taking Arimidex,he wants to do the Breast Cancer Index test to see if I'll need to stay on it for another five years. Question: when they do the test, do they test tissue from both the IDC tumor and the DCIS or just the IDC? Thank you for your input!!!
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My last MO (she moved in February) said she wasn't convinced I would need to stay on beyond the five years. But we would wait to see if more info came out before it came time to make a final decision. My new (temp) MO said to count on ten years. She basically told me I could tell her all my side effects but she was still going to tell me to keep taking it. So in other words, shut up and take it! I still have almost three years and I'm hoping there will be a more definitive answer before then.
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Fascinating posts about AI therapies. I have just completed active treatments. Now expected to take Anastrazole for ever (or at least 10 years). (IDC, Stage 2). I am trying to make an informed decision on whether to proceed or not. Up until now - roughly a month, have taken 1 a week instead of daily. Ofcourse i am worried about not taking it as prescribed, and concerned about reoccurence etc. Just so afraid of side effects, especially as i'm already moody with hot flashes despite being post menopausal. Also have joint pain. But afraid about the risks of non adherence, Am i being silly and should just get on with it, or rightfully cautious. I've never been that good at making up my mind anyways !
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Brixtonian, I sincerely doubt that taking one dose per week is going to provide any treatment benefit since it's only 1/7 the dose. And, I may be wrong, but I don't believe the drug stays in your body that long. Why not try at least every other day for a while so you at least get SOME benefit?
For myself, I jumped right into a full dose. I had very few side effects (none unmanageable) for many months and am learning now how to manage those that have cropped up. Not everyone will have the same experience, of course.
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Hi everyone, I've been on letrozole 5 years 3 months. Last January my onco recommended I go another 5 years. I really didn't want to. Then last Friday, he told me about the Breast Cancer Index test and that it can tell us if the added 5 years will be of benefit or not. I told him to order the test if insurance will pay. I've been wrestling with this idea of another 5 years for a while now because I'm not convinced the benefit out weighs the risk. It is only effective in 3-5 women out of 100 for the extra 5 years. So if they have a test that will tell us who that is, I'm all for it. I haven't read back through all the pages of this thread, so please forgive me, if someone already posted the following web-site from the company that developed the test.
https://www.answersbeyond5.com/
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grandmav - Biotheranostics, the company that does the Breast Cancer Index testing, does not charge the patient if their insurance denies payment. They have their own department that handles the appeal process. If all appeals fail, they absorb the cost. My assumption is that they want to broaden their database and make the test more enticing to more oncologists. If patients are uninsured, they have a patient assistance fund
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I just saw my MO for my maintenance visit and she mentioned she was planning on doing the Breast Cancer Index next year October when I'm closer to my 5 years of being on Arimidex. That was the first I'd heard of this test, and searching for info on it led me to this site. Really hoping it'll show I can stop taking it after 5 years. Although my joint stiffness has resolved over time it's a constant battle with my weight that I seem to be losing, and my last bone density test showed that I've lost bone in my arms (I'm not a candidate for taking Fosomax since I've previously done my 5 years on that.
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Curious if the jury still out on the BCI test? My MO is going to research, which is the answer I usually get from her when she's not convinced of something. My five years is up next month and I don't see her again until October (we had agreed I'd at least stay on another year due to my "worry" profile, though she said only a very small benefit to stay on for 10 years).
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It's good to know the BCI is around, and thank you to the women who came before us to give us the data to know if we must keep going with these painful damaging meds.0
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Grandma I wii be getting my results this Friday. I don't know even if it says I should take it I don't know that I will. I have been off Arimidex for 3 years and then had a reoccurrence which was a new primary cancer and of course I had to do chemo booo I didn't have to do it the first time and now they're trying to talk me into a hormone blocker and I have to say, I always hate to say this cuz I don't want to scare people but those five years were the most miserable 5 years of my life and I don't think I want to do it again. I will post on Friday and let you know what the results were.
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You know, I dearly wish we had something better but at this point we don't and while the AIs do make life harder, they don't have anywhere the impact that a recurrence would - at least for me.
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I am six years post diagnosis and still taking AI'S. I plan to continue as long as my MO recommends. Thinking the side effects are tolerable because I have about 37 great nieces and nephews that are good huggers. I love when they come into a room and run to hug me. I have to stay cancer free so I can teach these little ones the power of a hug.
I would like to lose some weight and get more energy. I have the knowledge and tools, need to motivation. And here I sit typing.
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Dear Diane3,
Welcome to the community. We are so glad that you reached out and shared your story. We look forward to seeing you around the boards and hope that you will stay connected here. The Mods
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Welcome Diane and thank you for sharing! My grand babies are the best therapy
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my BCI test came back that I am still in a high-risk category and would have a high benefit from extending AI for another five years.
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OG56 - Thank you for sharing the results with us. Whatever you decide to do, we're behind you and support your decision.
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I also came back with a high score. Sure enough it did return this year. I've been switched to Arimidex for hopefully 5 years which would be 12 in all.
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OG56, sorry to hear about your test result but thanks for sharing. Did you have to do chemo with the 2nd one because it was a recurrence? Your profile shows that it was Grade 2 but negative nodes, is that correct? I agree with you about the years of misery - I am closing in on my 5th year in October. I'm undecided about continuing.
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Brix, I echo the thought that if you don't take the prescription dose as prescribed, it will be ineffective and provide almost no value. I have been on Tamox for two years and now deemed post meno (after chemo and tamox), was switched to the AI grade drugs. Had SEVERE side effects on Letroz and now switched to Exeme and still have pretty strong SE with constant joint pain, even ribs/collar bone joints. IMHO, you have a decision to make, take it as suggested or don't bother. I have found that it's easier to be more 'bold' (or slack) being on this side of treatments (2 yrs later), because my conviction (healthy lifestyle, regimented no alcohol, daily exercise) has relaxed a bit since the harsh reality of when I was first told I have BC and discovered very late. I want nothing but to put this behind me and forget about it, but in my heart, I know I cannot stick my head in the sand. I have to deal with the reality and make decisions that are right for me, balancing quality of life and threat of what happens if it returns.
So, yes, my onco said I need to be on this stuff for 10 years. I too have to decide whether the daily pain is worth the potential piece of mind that I am doing what I can reasonably to avoid recurrence. For me, stage 3C/Lobular, I NEVER WANT TO DO CHEMO EVER, EVER, EVER, EVER again so I am going to try to tough it out because recurrence and dying early is more frightening than dealing with pain. So, I'm going to try the anti-inflamm approach to see if that lessens the joint/muscle pain and taking hair/skin/nails gummies with biotin to see if the hair thinning/shedding because of the AI can be mitigated a bit. Truly, this is my opinion and everyone has their own thoughts - at 52 years old, I am not ready to have this SH_T come back and take my life so I've chosen to deal with the pain, a little less enjoyment in life and a lot less hair - regardless, the sun will still rise tomorrow and we all get another chance to change our minds later.
This is a personal decision that only you can make. Only you can take care of you - balance the risk and reward along with the unknowns that you feel you can live with!
To all my BC friends, I pray none of us ever have to face it again and am thankful for all of the comments, feedback and ideas posted with free will so that we can lean on each other to lessen the burden of our reality and share the differing knowledge and lessons learned, BTW, one more thing, after my BROTHER too was diagnosed and treated in the same exact way (mastect/chemo/rad), make sure the men in your life also check out anything abnormal, his doctor dismissed it and upon finding it was stage 3 - it just shows that even with all the awareness, even his male primary physician totally dismissed it until he was forced to acknowledge the lump !! Take Care All !
(which, BTW, because of his diagnosis and even with non BRCA I was still encouraged to do a prophy right side which I did, and am still told to be on the drugs for 10 yrs).
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Penny, I'm going on 5 years with Exemestane and yes, we are different, but I remember the first year on this drug was tough. Waking up feeling like a 90 year old woman (as if I knew what that was at age 60), trigger fingers, hands swelling. I'm here almost 5 years later and most of these symptoms, or in their extreme, have gone away. I heard they might, and they did. I followed two others when I was initially dx'd who were ER+ and chose not to take hormone blockers and both of them had recurrences. I am not here to say that is any kind of scientific sample, but it speaks to me.
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It was grade 3, K167 28% did chemo 2nd time around,decided I will give Aromasin a try, since Arimidex and I did not get along. I am taking another month off before I start because I need it LOL
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Hello all,
I am in my 4th year and have been looking forward to doing the BCI test for some time. My (new) MO, while resistant at first, has agreed to do the test. On one hand, I'm scared at the thought of stopping the therapy and on the other, I'm hoping I'm low risk so that I don't have to do this for 5 more years. I do have osteoporosis, although I had it before I started on AI's and it hasn't declined much. Probably due to the Zometa taken as recommended for the first 3 years.
I'd like to know if there are others on AIs with osteoporosis who are continuing with a biophosphate beyond 3 years? My bone scan showed improvement while I was on Zometa, but after I stopped, I went back to osteoporosis category. I realize I'm probably not a suitable candidate for continuing AIs due to the risk of bone loss. My mom had osteoporosis, too. So....who gets to decide if you continue therapy - regardless of what your test shows?
~M
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bc101 - I did the BCI test when I was just shy of the 5 year mark, my result was high recurrence risk, low drug benefit. I have mostly taken letrozole (generic Femara), but did have a 18 month run on anastazole (generic Arimidex) after developing a trigger thumb. I was osteopenic for 9 years prior to breast cancer, due to a total hyst/ooph at the age of 45. Chemo and the first the six months of letrozole worsened the osteopenia enough that in 2012 I started Prolia every six months. My oncologist advised me to remain on both letrozole - even with low drug benefit,and Prolia, which I have.
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bc101, it looks like there are no cut and dried answers about continuing AI's after 5 years; this Medscape article consisting of interviews with several prominent MO's demonstrates even they are not all on the same page: http://www.medscape.com/viewarticle/864445#vp_1
I've had osteoporosis (but reversed it with several supplements) but still need to be wary of continuing since I also have a history of heart disease and other research has shown a risk in that category: http://www.medscape.com/viewarticle/873159
When I started 5 years ago I was told 5 years and then I'd be done. Now, not so simple.
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