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How Many are doing 10 years on Aromatase Inhibitors

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  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited April 2014
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    Jelson!  The above picture is the Frogg Toggs that I'm WILD about....


    Now if they only came in WILD prints to match my wardrobe......

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited April 2014
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    Kinder...Congrats on doing well!

  • voraciousreader
    voraciousreader Member Posts: 3,696
    edited April 2014
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    Regarding E-Module....Here's an interesting study that shows the complexity of the disease.....

    _____________________________________________________________________________________________

    Adv Drug Deliv Rev. 2014 Jan 9. pii: S0169-409X(14)00002-7. doi: 10.1016/j.addr.2014.01.001. [Epub ahead of print]

    The need for complex 3D culture models to unravel novel pathways and identify accurate biomarkers in breast cancer.

    Weigelt B1, Bissell MJ2.

    Author information

    • 1Department of Pathology, Memorial-Sloan-Kettering Cancer Center, New York, NY 10065, USA. Electronic address: weigelt@mskcc.org.
    • 2Life Sciences Division, Lawrence Berkeley National Laboratory, Berkeley, CA 94720, USA. Electronic address: mjbissell@lbl.gov.

    Abstract

    The recent cataloging of the genomic aberrations in breast cancer has revealed the diversity and complexity of the disease at the genetic level. To unravel the functional consequences of specific repertoires of mutations and copy number changes on signaling pathways in breast cancer, it is crucial to develop model systems that truly recapitulate the disease. Here we discuss the three-dimensional culture models currently being used or recently developed for the study of normal mammary epithelial cells and breast cancer, including primary tumors and dormancy. We discuss the insights gained from these models in regards to cell signaling and potential therapeutic strategies, and the challenges that need to be met for generation of heterotypic breast cancer model systems that are amenable for high-throughput approaches.

    Copyright © 2013. Published by Elsevier B.V.


  • lago
    lago Member Posts: 11,653
    edited April 2014
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    ^ exactly voraciousreader! They should also start referring to it as the diseases.

  • april485
    april485 Member Posts: 1,983
    edited April 2014
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    Jelson, My MO prescrbed Aromasin for my DCIS when tamoxifen was not a good option for me due to a family history of blood clots and stroke. So, it is not out of the question for DCIS. Aromasin has been found to be effective for all early BC she told me. She is not a fan of Arimidex or Femara for DCIS, only Aromasin.

  • jelson
    jelson Member Posts: 622
    edited April 2014
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    I will ask my MO about Aromasin. thanks April485!!! and thanks VR!! I will definitely try out the chilly frogg toggs thingees.

  • Kindergarten
    Kindergarten Member Posts: 2,883
    edited April 2014
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    Thank you, Voracious Reader!! I think my body has finally just gotten used to the aromasin!! I wonder if I will go withdrawal symptoms when I do stop!!!  My onc did say I will go off it gradually once I hit the ten year mark! 

  • proudtospin
    proudtospin Member Posts: 4,671
    edited April 2014
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    Kathy, I just ended my aromasin, 5 yrs was my oncs suggestion

    I stopped cold as per her instructions and can tell you the first week off...felt very anxious and nervous. But now, not dif and got my same old aches and pains!

  • Kindergarten
    Kindergarten Member Posts: 2,883
    edited April 2014
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    Hi, Proud to spin!! I am sure 5 years was absolutely long enough for you! I had bi-lateral breast cancer, grade 3 and a positive node!! So sorry to hear that you still have aches and pains!! Hopefully, that won't last long!! 

  • septembersong
    septembersong Member Posts: 153
    edited April 2014
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    I stopped letrozole (Femara) after five years. My oncologist was very clear that there were no demonstrated benefits for me (small, node-negative tumor, ER+/Her-2+) in continuing. After three months, I can report that my aches and pains are the same. However, I have arthritis (one total knee replacement, one with bad x-rays) and chemo-induced peripheral neuropathy, so those aches and pains may have nothing to do with the letrozole. 

    I hope others who stop hormonal treatment get some relief!

    Ann

  • rosa1
    rosa1 Member Posts: 1
    edited May 2014
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    Hi, I'm new here.

    After taking tamoxifen 2,5 years, I changed to Letrozol. After 6 months  I god heart problems , they became so bad that I decided with my oncologist to

    step over to Aromasin  (Exemestaan); the heart problems almost disappeared. (a bit is left).  So, I'm now on Aromasin since november '13. 

    My muscles are tight, my knees, hands, feet etc. hurt, and I am embarassed by the way I move; must look like a 90 year old, and thats how my muscles etc feel to me. BUT: My psyche is going better and better. I'm feeling good, better than ever. 

    Than the question: would you do 10 years on Aromatase inhibitors? Well. The pain in the muscles, etc, is one thing, but the heart problem is a little bit still there. So I am not completely sure I will go on with this medicin. In total I did 4 years on estrogen-lowering medicins now. I will do my five years, and then research what the alternatives are. 

    Good luck to everybody, 

    Rosa1

  • moderators
    moderators Posts: 8,057
    edited May 2014
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  • aussieched
    aussieched Member Posts: 87
    edited June 2014
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    Bump

    I have completed over 6 years of Femara and now moving into my 7th year.  How many other ladies have been advised by their oncologist to keep taking it after the 5 years have finished.

    Not sure why some doctors are recommending it, and others are not.  I have had many many problems from the drug, and am concerned about the long term damage being done, but oncologist said he thought it a good idea to continue for the time being, so I continue to battle on in the hope it is going to help me long term and push back recurrence.

    Ched

  • lago
    lago Member Posts: 11,653
    edited June 2014
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    My onc more than hinted it at it for me yesterday. Results of the studies (in progress) are not out yet but implied it stands to reason if Tamoxifen is better for 10 years then the AIs for 10 years should have the same results.

    At least for those who are high risk for recurrence. The thought is to treat it like a chronic disease like diabetes or hypertension.

  • cp418
    cp418 Member Posts: 359
    edited June 2014
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    I just started year 8 on Femara (generic version now). I was encouraged by my onc to do a minimum of 7 years for my high hormone positive bc.  I've had to get Zometa infusions in the past for osteopenia and then again recent dx.  I hope to make it to 10 years on this drug if it can prevent recurrence.  I exercise regular to deal with joint/body aches and it helps.

  • AmyQ
    AmyQ Member Posts: 821
    edited June 2014
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    I started Femara last year, July, and when prescribed my onc said 5 years and possibly 10. I would LOVE to still be around and make it to 10. I know the SE's can be difficult and for others downright unbearable, but for me I'm tolerating it well.  Here's to 10 years on Femara.

  • Kindergarten
    Kindergarten Member Posts: 2,883
    edited June 2014
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    I am on my 9th year of aromasin!! I have had ups and downs with this drug, but I will take it for one more year!!! Good luck to everyone!!!

  • aussieched
    aussieched Member Posts: 87
    edited June 2014
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    Hi cp418,

    What do they class as high hormone positive.  Mine was 80% ER and 80% PR???   Is that average?  or high?

    thanks Ched

  • lago
    lago Member Posts: 11,653
    edited June 2014
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    aussieched that is classified as  high but my onc told me a few days ago that doesn't matter. I'm only 30% ER+ 5% PR+ and she basically told me "It doesn't work that way." I think what she was trying to say is you can't be a little bit pregnant. You either have the issues or you don't

  • momand2kids
    momand2kids Member Posts: 118
    edited June 2014
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    Ladies

    thanks for this informative discussion.  I am supposed to go off femara in 3 weeks which will be 5 years.  In my last onc appt we talked about my  slow growing tumor, lack of nodes, full treatment and they essentially said my risk was low and the benefit of going off the drug was greater.  I wanted off anyway- just to see if I feel any differently.

    However, over the past two weeks I have been chasing down a lung nodule (they don't think it is anything, I have to have a re-scan in August) and thyroid nodules (had a biopsy yesterday).  Now I realize that first, these things have a 90-95% chance of being benign and second, are very unlikely to be related to bc.  I rationally know this.  

    However, for the first time ever, I started to consider staying on femara-- I have no bone issues at this point-- but I know this is an emotional reaction to these stressful events (I have been over the top all week--thankfully the pulmonologist and the thyroid radiologist both reassured me about the benign possibilities being very much in my favor.  

    So, I have emailed my onc to see what she things again---just to revisit this.  One idea I have is to go off for the summer, and see how I feel in the fall..... I have to get over the idea that once I go off, my body will start doing bad things......sigh.

    thanks

  • proudtospin
    proudtospin Member Posts: 4,671
    edited June 2014
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    mom, I am sorry about these new things and do pray they up as benign things for you.  Regarding going off, whatever is going to be the least stress for you is my suggestion.  You can always change later.  Truthfully, it does take some weeks or months to feel any difference or it did for me

    stay in touch, I know you have access to great docs so trust in them

  • pip57
    pip57 Member Posts: 7,080
    edited June 2014
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    proudtospin, that is a good way of putting it.  Do whatever causes you less stress. 

  • proudtospin
    proudtospin Member Posts: 4,671
    edited June 2014
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    we all  need to go with our gut

  • patoo
    patoo Member Posts: 5,243
    edited June 2014
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    Hi all, my MO is also keeping me on the Anastrozole (I passed the 5 year mark in Feb 2014), he said for at least another 2 years.  I wasn't sure I wanted to stay and have been knocking it about in my brain since he told me back in April.

    Now I have read the 'Breaking News' article posted at the top of this thread and I am comfortable staying on it for the long term especially since I have not had any significant SE's at all.

    I agree you have to go with your gut based on available information.

     

  • MsPharoah
    MsPharoah Member Posts: 224
    edited June 2014
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    Hi all, good discussion.  I used to feel fortunate that I have 4 more years on femara before I have to decide about extended treatment (by then we will have more science, etc. etc.) and then I read this article which basically gives us post menopausal who haven't finished 5 years of AI a choice of possibly switching to Tamoxifen for the next 4 years!!!!  All the literature I have read says that AIs are more effective for Postmeno women, so why would I take Tamoxifen in lieu of AI's for any period of time.  

    Maybe I am misreading the options for postmeopausal women who started taking AI and haven't finished yet.   

     Aaargh!  I will see my onc for my regular appointment this Friday.  Hopefully she can help me understand this information and what it means.

    MsP

  • ruthbru
    ruthbru Member Posts: 47,030
    edited June 2014
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    Well, for what it's worth, this is the direct quote from ASCO (when talking about options):

    "take an aromatase inhibitor for 5 years; right now, there isn’t enough evidence to recommend taking an aromatase inhibitor for 10 years"

  • MsPharoah
    MsPharoah Member Posts: 224
    edited June 2014
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    Ruthbru....the options are confusing to me.   I want the experts to tell me that swallowing that little pill for another 5 years will keep this beast away longer and they just won't do it.....yet??   I hate cancer!

    MsP

  • livin-in-sunshine
    livin-in-sunshine Member Posts: 21
    edited June 2014
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    I am under the impression that switching off the AIs and on to Tamoxifen provides reduced chance of recurrence but just not to same effectiveness as the AIs. BUT, switching gives your bone health a boost. Maybe it's sort of like lessening the evil caused by the SEs.... changing it up a bit. 

  • Kindergarten
    Kindergarten Member Posts: 2,883
    edited June 2014
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    Since I have been taking the Aromasin now for 9 years, I do feel compelled to go one more year!! I just hope and pray that there are not too many serious consequences!!  I do have osteopenia and high cholesterol, but my onc thinks I can hang on onemore year!! I had lymph node involvement, so my onc feels the 10 years will be beneficial!! I hope so!! 

  • proudtospin
    proudtospin Member Posts: 4,671
    edited June 2014
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    the options are sure confusing but I am going with what my onco said and well, ended it all in Jan.  BP is down but that is only a part of why it is down. Doing mamo and bone density the end of the month so will see..