Quitting my treatment

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  • dtad
    dtad Member Posts: 2,323
    edited November 2017

    tgtg....congratulations on being NED for 5 years despite refusing anti hormone treatment. At stage 1 with your stats IMO weight loss and exercise is an effective treatment plan. Of course everyone is different and I'm certainly not opposed to it in general. We all have to make our own informed decisions. I support and respect all personal decisions made. Good luck to all navigating this complicated disease.

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  • leftduetostupidmods
    leftduetostupidmods Member Posts: 620
    edited November 2017

    I took AIs for 3 1/2 years after which I stopped because the pain was too great. Apparently I stopped too late. I got rapidly advancing osteoarthritis, my cervical spine is totally busted. My spine doctor said that when he looked at my Xrays before meeting me he thought I was in my late 80s or something

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  • Meow13
    Meow13 Member Posts: 4,859
    edited November 2017

    oh no seachain, my spine was compromised but not too badly. I hate that we can't have drugs to fight cancer that don't cause other health concerns.

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  • Jbakerwebb
    Jbakerwebb Member Posts: 34
    edited November 2017

    do you mind me asking what your oncotype score was

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  • Wildplaces
    Wildplaces Member Posts: 864
    edited November 2017

    Hello Jbakerwebb,

    I wouldn't say you want to stop for no reason - "your joints are killing you"😊

    You had pretty aggressive chemo for a 1cm lesion with no nodes, of course your oncotype would weigh in that decision - still...

    ( you can see from my signature I threw the kitchen sink at mine)

    I would talk to my MO frankly about wanting to stop, explore options ( I know you know the options but it's different when you talk to your doctor about it) and then try and make a decision. If it reminds you of breast cancer and you would prefer not to have that "daily moment" - I take mine just before dinner - go figure - tell your MO - it's clearly important to you, you would have not started a thread otherwise.

    So if it is about side effects -yeah, plenty of them, but for HR+ ve disease there is benefit. But if is more subtle - it's about moving on or not thinking much about it - then an authentic answer that is right for you will be a little harder to sort out.

    ()😊🌷


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  • dtad
    dtad Member Posts: 2,323
    edited November 2017

    Just want to add that unfortunately joint issues can be permanent from aromatase inhibitors. Of course not for everyone. Just think it is important to be informed before making any treatment decisions. Good luck to all...

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  • Barrelracer13
    Barrelracer13 Member Posts: 7
    edited November 2017

    I wish I could have had the chance to take it 5 more years as I am hearing there are new recommendations for that. My cancer returned after 16 yrs. I am ER and PR+, HER2-.  I had a lumpectomy and radiation and 5 yrs of tamoxifen. There was a local recurrence 7 yrs ago in the skin on the original side. I  found out 2 wks ago that it has progressed to my bones. If taking tamoxifen for another 5 yrs might have made a difference I would have done it in a heartbeat.  But I can't go back now.  Would I trade the SE's for cancer?  You bet!

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited November 2017

    Yes, joint issues MAY be permanent after AIs - but they also may NOTbe. I've found that mine let up after a couple of years on AIs and are no worse than the joint issues I'd dealt with prior to breast cancer. On the other hand, quitting treatment MAY (or may not) result in metastatic recurrence. I think it's important to keep in mind that quality of life issues at Stage IV can be exponentially different than those on maintenance AIs. Everyone's entitled to make their own choices but let's not pretend it isn't a high stakes decision.


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  • Meow13
    Meow13 Member Posts: 4,859
    edited November 2017

    That is why we need better treatment.

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  • dtad
    dtad Member Posts: 2,323
    edited November 2017

    Hi everyone...let's just keep in mind that there are no guarantees either way. We all have to make our own informed decisions about treatment options.

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  • pupmom
    pupmom Member Posts: 5,068
    edited November 2017

    There are no guarantees, but your odds are a lot better if you take your medicine.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited November 2017

    We need better medicines.

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  • dtad
    dtad Member Posts: 2,323
    edited November 2017

    Meow13....I agree we need better treatment options. The non compliance rate due to side effects is just too high!

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  • swg
    swg Member Posts: 461
    edited December 2017

    Pupmom--you keep saying, the odds are better with medicine. Can you prove this?


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  • Icietla
    Icietla Member Posts: 1,265
    edited December 2017

    swg -- Here you go__

    http://www.breastcancer.org/research-news/not-taking-hormonal-tx-leads-to-more-recurrence

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  • Icietla
    Icietla Member Posts: 1,265
    edited December 2017

    swg -- For a good idea of all the recurrence risk difference adjuvant Tamoxifen makes (to study populations of ER+ breast cancer women) over not having any endocrine treatment (before Tamoxifen was available to treat ER+ breast cancer patients), read the first paragraph here in the Challenges In Diagnosis And Management section. As to the difference AIs make, see the third paragraph in that section.

    http://ascopubs.org/doi/full/10.1200/JCO.2012.46.6599

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  • pupmom
    pupmom Member Posts: 5,068
    edited December 2017

    Icietla, thanks for those links! I have bookmarked.


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  • Icietla
    Icietla Member Posts: 1,265
    edited December 2017

    Pupmom -- You are very welcome. Thank you for encouraging others to try what their Doctors recommend for their best survival prospects. For most patients who use it, anti-hormonal treatment is easy.

    Peace and Blessings, all.

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  • Hopeful82014
    Hopeful82014 Member Posts: 3,480
    edited December 2017

    Like most of us, I'd prefer not to need to take any medication on an ongoing basis and I do understand about that nightly pill being a reminder of cancer. I've also gone through my share of side effects. But I've persevered, switched from one AI to another (and back again) and am now into my 3rd year with little doubt that 5 years will be doable (although 10 years still seems daunting - I'll deal with that if/when I have to).

    I did find that switching back and forth helped for some reason - it's certainly not logical. I also benefited a lot from working with an integrative physician (who also works closely with my MO). There's pretty good evidence that acupuncture is worth trying for joint pain. (And there are some sliding scale options for acupuncture if not covered by insurance.)

    I hate to see anyone driven to stop treatment, especially stage II and just a year into treatment. I hope you can find ways of ameliorating your joint pain, Jackie, and to obtain the benefit of treatment.

    Edited to add link.

    http://www.cancernetwork.com/sabcs/acupuncture-reduced-ai-related-joint-pain-early-stage-breast-cancer/?GUID=D53A0013-69D7-4B59-83CC-F2AF978428FB&XGUID=&rememberme=1&ts=08122017


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  • dtad
    dtad Member Posts: 2,323
    edited December 2017

    Icietia....we all have to make our own informed decisions. I support and respect all decisions and I'm happy for those who do well on anti hormones. However, I must point out that your statement saying that most that use anti hormone treatment find it easy is just not accurate. My MO at a major NYC university hospital told me that 50 percent do not complete the 5 recommend years due to side effects.The 50 percent that do complete it are not all side effect free. So I wouldn't say most find it easy. Good luck to all navigating this complicated disease.

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  • Meow13
    Meow13 Member Posts: 4,859
    edited December 2017

    I was not willing to allow exemestane to interfere with my eye sight. I was freightened by my severe dry eye. These side effects can be severe and I wouldn't let anyone talk me into tolerating it.

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  • dtad
    dtad Member Posts: 2,323
    edited December 2017

    meow13....you have to do what is right for you! I support and respect all individual decisions made, including yours. Good luck to all.

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  • Jbakerwebb
    Jbakerwebb Member Posts: 34
    edited December 2017

    who are you to decide what's safe for me? Nobody but ME makes the decision for ME as to whether or not I do or do not do the meds,


    So please MODERATORS disregard this comment from KB870. She can choose not to participate in this discussion. I have REAL feelings about this topic. She cannot dictate my feelings or emotions!


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  • Icietla
    Icietla Member Posts: 1,265
    edited December 2017

    dtad -- Since the 1980s I have known very well numerous women who have taken the anti-hormonal medicines recommended for their cases. None of them ever even considered discontinuing (as on their own instance) their recommended endocrine therapy.

    Since about two-thirds of breast cancers are ER+, one can fairly expect that most of the diagnosed members here, besides many of the high-risk undiagnosed members, are advised to take anti-hormonal treatment. Do you see most of the members (most of them presumably using these medicines) complaining of intolerable effects?

    "The 50 percent that do complete it are not all side effect free."

    The spectrum of possible side effects includes trivial ones and many more that are well tolerated. The 2011 paper KB870 has linked on this thread indicates that 36% of those Anastrazole and Exemestane users studied quit early because of side effects. It also says__

    "The women at highest risk for quitting the medications before the recommended five years are those who still are experiencing residual side effects from recent chemotherapy or radiation therapy when they start the aromatase therapy, according to the study. Women who had surgery for breast cancer but not chemotherapy or radiation therapy, or who weren't taking many other medications, were more likely to keep taking the aromatase medication."

    Peace and Blessings, all.
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  • Meow13
    Meow13 Member Posts: 4,859
    edited December 2017

    Well personally I never did chemo or radiation just anastrozole and exemestane. I never had any issues before I took these drugs. So glad I got off them now I am trying to get closer to where I was before treatmemt.

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

    KB I understood what you said.

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  • Jbakerwebb
    Jbakerwebb Member Posts: 34
    edited December 2017

    OMG! This hit me like a rock. Now I get it for me personally! It really makes so much sense!! This is exactly why we have this forum. I have SO many residual problems (thank you chemo) and it makes sense that it why so many stop....including myself. I’m getting to the desperate stage with my neuropathy and my spine pain just keeps getting worse and worse! Thank you for that insight.


    Sorry ladies for the “fuss” on this feed. I get very sensitive whenever my perception is that my feelings about something aren’t valid. Our journeys and stories are all personal and rad.It has resolved itself.


    I hope all have a very merry Christmas


    Blessings


    Jackie

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  • dtad
    dtad Member Posts: 2,323
    edited December 2017

    Icietla....the stat that 36 percent quit treatment early on Anastrozole and Exemstane may be correct. The 50 percent rate of non compliance includes both Tamoxifen as per my MO. IMO that is just too high. We need to speak up for better treatment options.

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