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Emma17's avatar
Emma17
Member
6 years ago

ASCO 2019 - Aromatase inhibitors - Women need better treatments for side effects

The American Society of Clinical Oncology (ASCO) recently concluded its 2019 conference.  ASCO's annual conference is the "bees' knees" of oncology conferences and Australian presenters are usually on the programme.

Below is a link to breastcancer.org and their interview with Dr Dawn Hershman, lead of the Breast Cancer Program at Columbia University (New York) regarding her three-year study using text messaging to improve adherence to AIs.  It is titled 'ASCO 2019:  Women Don't Need Reminders To Take Aromatase Inhibitors, They Need Better Treatments for Side Effects'.  Her study involved postmenopausal women only but the key takeaway applies to pre- and post-menopausal women:  side effects (SEs) induce women to discontinue taking AIs.

https://www.breastcancer.org/community/podcasts/hormonal-tx-compliance-20190603

The highlights are: 
4:00 - discusses the rates of women stopping AIs at 1, 2, & 3 years (based on urinalysis, 30% stopped AI use at year 1, 40% stopped at year 2, 45% had stopped at year 3).  Only 10% of women self-reported stopping.
4.48 - discussion starts to evolve to include SEs with 'We learned a lot'...keep listening here, her POV is interesting
5.56 - women want to keep taking AIs but need good interventions to control SEs
7.09 - we need to enhance patient/provider communication so that we can intervene in the case of SEs
7.23 - women cannot keep taking their AIs because of SEs
8.15 - what are the next steps for research?  keep listening here
8.59 - we don't have great treatments for SEs
9.14 - the interviewer revealed she talked to a doctor who attended the ASCO conference and admitted she did not take her AI as long as she should have because of the SEs
9.29 - we have to come up with better treatments for SEs

It is refreshing to hear a cancer specialist at a US Ivy League cancer centre acknowledge the role of SEs in adherence to AI use and that better treatments are required.  Too often we are dismissed by healthcare providers with a 'suck it up, sister' attitude.

Currently you can listen directly from the breastcancer.org website or download to your device.  The full transcript is '...coming soon...' so bookmark the link and keep checking for it.







hormone-therapy
side-effects
  • Brenda5's avatar
    Brenda5
    Member
    6 years ago
    I disagree with the one pill fits all idea. I really think they were far too strong for my heart to handle. They need to do a 1/2 tab survey.
  • arpie's avatar
    arpie
    Member
    6 years ago
    Was there a longer interview available @Sister - or are your comments from the 9 minute interview above?   Do we know if a longer interview or download is available from the actual Discussion @Emma17 ?

    A text message could well help us, I reckon!  (Does anyone know how to send a message to themselves every 24hrs?)  Even with both hubby & I taking tablets at the same time - and supposedly remind each other every day - we still forget sometimes (Specially if we go out for dinner - we forget to take them when we get home!  DUH!!)  And if we go away  & change our routine, we often forget too.  :( 

    I can readily believe that women stop taking their AI tablets completely due to the side effects, to get some sort of 'life' back.  Cos - we weren't 'ill' when we were diagnosed - we had a 'condition' that was removed.  It is the AI tablets that is making us 'ill'!

    We've already seen that men on hormone tablets have had special research done to mitigate THEIR side effects (which are almost identical to ours!)  So it is totally untenable that the same research hasn't been extended to the MILLIONS of women who are adversely impacted by AIs.

    Here are the other short podcasts as well - including on Mets, diet & exercise, weight gain & losing weight, depression & other stuff
    https://www.breastcancer.org/community/podcasts

    I have located her email address as well & may make contact ..... so if anyone wants it, shoot me a PM!  ;)  That way, WE could become a part of her study as well!

    Take care, ladies & have a great weekend.  Magic weather up here just now!  
  • Sister's avatar
    Sister
    Member
    6 years ago
    Which one are you on, now @primek?

    I did listen to the interview.  I'm not quite sure how I feel about it and the assumptions that prompted the study (although I thought that the professor sounded quite reasonable and nice).  I'm sure there are some women who forget their meds a lot but did they really think that it was on the scale of nearly 50% on a regular basis.  We're generally the ones who are organising everything so I think most of us can be trusted to work out a system to make sure we take vital medication.  Okay...I thought yesterday, halfway to work, that I had forgotten for the first time in 10 months.  It turned out that I hadn't - I just didn't focus on the act of taking it yesterday morning.  Maybe I'm an anomaly but I don't think so.  I've watched the elderly women around me organise both their meds and their husband's meds for years.  So, not knocking the professor and I rather think that her conclusion at the end was on track (that it might just be the side effects) but I do think it's a rather bizarre study to have come up with given what we all know about hormone therapy.  I guess they've got to rule out that it's just that we're all shockingly forgetful about something that may save our lives but still...  Although, I believe she could be on to something with the inclusion of the idea that cost might be a factor.  For some women, even being able to access meds for $6 each month, that may be more than they can afford on a regular basis.  Add other meds to manage pain and that could become out of reach.

    Anyway, thank you for posting the interview @emma17 It's always good to hear that anyone is advocating for us in this sphere.
  • primek's avatar
    primek
    Member
    6 years ago
    Well there it is. 
    I just started on my new AI this week ...day 5 started with toe pain, and progressed to entire bones of the feet and wrists. Weirdly so far no ankle and back stiffness like letrozole. So on the panadol and thinking if it gets much worse  and no improvement letrozole might be back on.
  • jennyss's avatar
    jennyss
    Member
    6 years ago
    Dear @Emma17, Thank you for posting this link to the interview with Dr Hershman and her study finding that  people stop taking AI's because of side effects (LOL) . I will listen with great interest later today or tomorrow. Best wishes from jennyss
  • Emma17's avatar
    Emma17
    Member
    6 years ago
    @arpie It's heartening to learn there are doctors and researchers who won't kick the SEs of AIs into the 'Too Hard' basket because adhering to the full treatment period is so important.

    I've asked the moderators to recategorise this thread to General Discussion as when I selected Treatments & Side Effects I did not know it would be visible only to logged-in members.  It should be in public view as it complements the public General Discussion about last week's BCNA webinar on AIs.