AI- more than 10 years

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  • sugarplum
    sugarplum Member Posts: 318
    edited May 2017

    And an update from me as well....my 2nd opinion onc agreed to renew my Arimidex for another year as I'm still just osteopenic at this point. However, I have a July 18th appointment with a 3rd onc who's an outstanding & respected pioneer in BC treatment, so we'll see what HE says (I've made a pact with myself that if he says go off, I'm off - no matter how frightening it is!).

    Will continue to watch this thread with interest - Julie

  • wintersocks
    wintersocks Member Posts: 922
    edited May 2017

    Julie,

    We are pretty much in the same boat here. I am osteopenic too. With the exception I have been on the AI's much less time then you have. It will be interesting to see how opinions differ from UK to USA.

  • wintersocks
    wintersocks Member Posts: 922
    edited May 2017

    Julie,

    We are pretty much in the same boat here. I am osteopenic too. With the exception I have been on the AI's much less time then you have. It will be interesting to see how opinions differ from UK to USA.

  • SSInUK
    SSInUK Member Posts: 245
    edited May 2017

    Any more on bisphosphonates? I'm really surprised they're not recommending.

  • sugarplum
    sugarplum Member Posts: 318
    edited May 2017

    Funny thing about the bisphosphonates: when my bones started tanking in 2008 they put me on annual infusions of Reclast which I got for 6 years - after that time they didn't seem to be helping so we discontinued. The last couple of years my bone loss has stabilized (luckily just short of osteoporosis) but we are still watching it closely with annual DEXA scans. On the plus side, I don't have to worry about having dental work done anymore...

    Julie

  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited May 2017

    July marks the end of five years on letrozole for me, and I'm hoping my onc doesn't want to discontinue it. My DEXA scans have been OK, but I convinced her to put me on Prolia for recurrence prevention. Any weapon in the arsenal is welcome.

  • wintersocks
    wintersocks Member Posts: 922
    edited August 2017

    I an to speak to my GP on Tuesday to have a discussion and decide about switching to Tamoxifen as my 5 years is nearly up on Letrozole, I asked for a second opinion and the Professor of Oncology told me this: I am reading extracts from the letter he sent to me following my consultation .

    The truth is there is a a lack of evidence on what to do in patients who are high risk breast cancer who have received 5 years of adjuvant aromatase inhibition...

    Recurrence; In many indicating that this occurs within a year of stopping endocrine treatment. indicating that there has been an active control of the disease throughout the adjuvant period,

    Opinion: I think that most oncologists would agree that whilst there is no evidence for extended endocrine treatment beyond 5 years after an aromatase inhibitor there does remain a risk of her recurrence and that there will certainly be some benefit in continuing treatment for a further period. he goes on to recommend a switch to Tamoxifen (in my case), The reason is twofold: this may theoretically provide better disease control as resistance to endocrine therapy does develop a switch may be more protective. The other is bone health.

    At the end of our conversation XXXX was minded to continue with Letrozole and i told her from an oncological perspective that given the reservations about evidence I would support her in this.

    I absolutely have no idea what to do now.




  • sugarplum
    sugarplum Member Posts: 318
    edited August 2017

    DON'T YOU JUST HATE ALL THE AMBIGUITY!!!? I've been through 3 oncologists in the past 6 months, and their advice was as follows: "get off it", "take a 6-month break from it", & "continue taking if it eases your anxiety but there's no proof it's doing any good".

    Meanwhile in addition to osteopenia, I've now developed an abnormality in my latest EKG which led to a nuclear stress test last Friday (should get results next week). Who knows what havoc Arimidex has been quietly wreaking on my insides, under the guise of protecting me from estrogen!

    It's all such a crap shoot, isn't it? My best to all of us as we struggle to make impossible decisions...

    Julie

  • WorryWartSuzie
    WorryWartSuzie Member Posts: 29
    edited August 2017

    I worked in Radiation Oncology in the 1990s; the standard at that time was 5 years, but only in recent years has it been moved up to 10 years. I am predicting that they are going to eventually keep us on it for life. I have almost the same dx as you, except I was PR-neg, but am stage IIIC finishing up intensity-modulated radiation therapy. I think the biggest reason they don't want us on it forever is because of bone loss and the potential for eye problems, but if I am alive, I'll cope, right? You and I both had the identical treatment, as well. I see you have a prophylactic oophorectomy in your profile. Did you test positive for BRACA-1 or BRACA-2. I am considering a hysterectomy myself. I am 52 and never had children. Would appreciate a PM so you can tell me more. Thanks for the inspiration, by the way! I was diagnosed 9/28/16, so seeing you are 10 years out makes me very encouraged.

  • marijen
    marijen Member Posts: 3,731
    edited August 2017

    I am a worrywart too. What do you mean the potential for eye problems

  • wintersocks
    wintersocks Member Posts: 922
    edited August 2017

    Julie

    It is really an impossible situation isn't it? - I cannot think what I will say to the GP tomorrow as I have to make a decision. sorry to hear that you are waiting for the results of yet more tests.

  • sbelizabeth
    sbelizabeth Member Posts: 2,889
    edited August 2017

    American Academy of Ophthalmology, March 2003:

    Aromatase Inhibitors

    In recent years, aromatase inhibitors (AIs) such as anastrozole (Arimidex), letrozole (Femara), and exemestane (Aromasin) have been increasingly prescribed to postmenopausal breast cancer patients as adjuvant endocrine therapy, sometimes after two to three years of tamoxifen treatment. The short-term ocular side effects of AIs often seem to be mild, at least according to the limited cross-sectional studies that have looked at this question, Dr. Eisner said, although "There is theoretical potential for AI-induced estrogen depletion to increase the long-term risk of serious eye disease."

    Although AIs work by inhibiting estrogen synthesis rather than by occupying estrogen receptors as tamoxifen does, some of the AI side effects are similar to those of tamoxifen, according to Dr. Eisner. The estrogen suppression that occurs with AIs might be regarded as causing an accelerated female aging that resembles an exaggerated menopause.

    A study by Dr. Eisner and colleagues suggests that anastrozole can cause small retinal hemorrhages in some patients.4 He said that his research indicates that breast cancer patients who take anastrozole are more likely to have retinal hemorrhages than tamoxifen users. These hemorrhages may be the result of excessive traction on the retina, caused by estrogen depletion.5Related effects, such as posterior vitreous detachments, may occur during the natural menopausal transition, he said. Dr. Eisner noted that it's possible to assess the tractional effects of AIs through the use of OCT. Other possible effects of AIs include photopsia and increased incidence of floaters, as well as dry eye.

    Dr. Eisner pointed to the need for more studies of the effects of AIs, particularly longitudinal studies to better document and help clarify their ocular effects.

    "As many as 40 percent of women completely abandon their use of AIs before the prescribed time because they can't tolerate the side effects. Although the ocular side effects may be less important or less compelling than well-known side effects such as arthralgia or hot flashes, they nevertheless may provide the straw that breaks the camel's back for breast cancer patients on these drugs," said Dr. Eisner.

  • WorryWartSuzie
    WorryWartSuzie Member Posts: 29
    edited August 2017

    My oncologist told me that between the chemo I had (AC x4 and Taxol x12) and Femara, there is an increased risk for blurred or distorted vision, etc. I have worn glasses since I was 9 years old, and so in my case she thinks there may be worsening. You know how they always give you the LONG list of potential side effects - this one's at the very, very bottom -

  • marijen
    marijen Member Posts: 3,731
    edited August 2017

    I already have distorted vision- i have floaters (a lot) caused by Posterior Vitreous Detachment in both eyes and an ERM, I think that is a wrinkling of the retina, in one eye. A friend sent me another version of Dr. Eisner's study. I took it to my MO and my opthamologist. I was hoping that there might be more studies and more recent information concerning the eyes when I asked the question. My opthamologist said that Letrozole can cause swelling at the back of the eyes. He says I don't have swelling (yet) and I have another appointment in six months. I already have hazing/or cloudiness in both eyes due to the floaters from the PVD. There is a topic here called AIs and blurred vision, has anyone seen it. Since my vision in the last six months has deteriorated. I'm thinking I have to abandon AI. I also have pretty severe arthralgia recently. That might have been caused by having to switch from Roxane to Brec (Breckenridge) mfrs. If anyone has other studies they can post I would appreciate it. The doctors might take me more seriously if there was. After cataract surgery my eyes were great! Unfortunately that only lasted 4 years.

  • marijen
    marijen Member Posts: 3,731
    edited August 2017

    Hi,

    I forgot to say thanks ladies! And here is a good link on the eyes: http://www.retinaeye.com/epiretinalmembrane.html


  • pip57
    pip57 Member Posts: 12,401
    edited October 2017

    Is there anyone in Ontario who has continued AI treatment beyond 10 years

  • stephincanada
    stephincanada Member Posts: 228
    edited October 2017

    Hi Pip,

    My mom is in Ontario and is completing her 10th year of an AI this winter. She will discuss discontinuing with her MO at the next visit. She is terrified to stop, because she had extensive nodal involvement and grade 3 BC. But, the AI has detrimentally affected her quality of life. She has osteoporosis, arthritis and terrible joint pain. Quite the dilemma. I know there is new research questioning the benefit of an AI after 10 years, but I am not familiar with the details.

  • caaclark
    caaclark Member Posts: 936
    edited October 2017

    Update-My oncologist agreed to keep me on Letrozole for now.  I believe I will soon be starting Prolia for bone loss.

  • peacestrength
    peacestrength Member Posts: 690
    edited November 2017

    Thanks for the update, Carol. Are you comfortable with your plan? Will you have Prolia by IV?

  • pip57
    pip57 Member Posts: 12,401
    edited November 2017

    Thanks Stephincanada. Although I have the aches, not enough to outweigh continuing to take an AI. But I do understand that the side effects can adversely effect some people’s quality of life. Tough decisions.

  • Gumdoctor
    Gumdoctor Member Posts: 675
    edited March 2018

    Hi All. I am new. Stage IV in dec 2017.

    Was just diagnosed with posterior vitreous detachment in left eye. Was so concerned it was mets in my eye. Have been beyond worried that I would lose my eye.

    Relieved this is not the case,at least for now.


    Warmly,

    V

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