Hormone therapy, is it worth it webcast

Artferret
Artferret Member Posts: 259 ✭
in Day to day
@kmakm Way to go , Kate! You were awesome! And thanks for having my drug holiday question featured too. I am doing a diary for it but had not contemplated continuing it after resuming the drug but now i shall, good idea. 
There was so much info that i will have to watch it again if i can figure out how to do it! @Giovanna_BCNA can you or someone else let me know?
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Comments

  • arpie
    arpie Member Posts: 8,122 ✭
    Well done, @kmakm - I didn't watch 100% (but think I video'd it!) so will watch it again in full.

    Some of the info the oncologist featured with his screen shots was 'old stuff'.  One of the research was 10 years old, one was 20 years old - so That is not always relevant to today.

    Adjuvant Tamoxifen - 2010
    Comparison AI data with EBCTCG - 1998

    I thought the Onc's comment on the use of cannabis (I know I mentioned CBD Oil, NOT cannabis - there IS a difference) was rather condescending.  Obviously more trials are required, as he said the trials had not been convincing. 

    (Don't be afraid to try it - I haven't taken a sleeping tablet or pain killer since starting on CBD 3-4 weeks ago.)
  • Milly21
    Milly21 Member Posts: 122 ✭
    I would also like to watch it if I can 
  • kmakm
    kmakm Member Posts: 7,974 ✭
    Thank you @Artferret. I had no control of what questions were asked. That was Kirsten.

    @arpie I would have preferred it if he had focussed a bit more on current developments too. If time and format had allowed I would have picked them up on the CBD oil thing; I did notice it. In the room it didn't read as condescending. More that they look at studies, and thus far studies are inconclusive about medical cannabis. I'm not ruling out giving CBD oil a crack. I just can't manage more than one thing at a time, and money is a big factor for me. My mum is helping me out with the acupuncture.

    My takeaway is that while there are statistically solid benefits to taking hormone blocking medicines, each person needs to be evaluated individually as to whether the benefits outweigh the negatives.

    Which is all well and good but doesn't take into account the psychological fear we have of recurrence, metastases and death. I'm too scared to come off the AI.

    So next stop for me on this shitty train ride will be hypnosis. And I'm going to explore some of those resources Martha was talking about.

    I'm no longer looking for solutions; there aren't any. I'm looking for ways to cope with the next nine years.
  • Milly21
    Milly21 Member Posts: 122 ✭
    Yes I’ve got another 7and half years,I was thinking other day if 5 years was still standard treatment,I would be able to say I’m halfway there!  I had hypnosis and found it quite useful,so good luck,
  • Blondy
    Blondy Member Posts: 238 ✭
    @kmakm. Nice to put the face to the name. Looking lovely. Now at the end you mentioned your thumb. Holey moley I've had a few months and a trigger joint too. Hard to open doors or change gear in the car. Had X-ray, nothing, had ultrasound and said the tendon was thickening. Could have either injections or surgery. That was all too much info for the thumb and scared the crap out of it. Over the last 2 weeks my thumb has done a complete reversal and is almost better. No pain at the base. Trigger gone, thumb pain gone and can use it again. I've been in the Anastrozle for 7 months and I'm getting over the side effects. Better than the Letrozole. 
  • kmakm
    kmakm Member Posts: 7,974 ✭
    Ooh, thanks for that @Milly21! Great to hear from someone who's tried it and found it helpful. K xox
  • kmakm
    kmakm Member Posts: 7,974 ✭
    @Blondy What you thought I looked like, or not at all?!  ;)

    Interesting about your thumb. It's such a lottery eh? And then some people (like @Deanne I think) have no trouble until several years in. I'm so glad you've had an improvement. K xox
  • Blondy
    Blondy Member Posts: 238 ✭
    @kmakm Not what I thought at all. With your workload plus health I expected you to look  something like Mrs Brown. Instead you gave us glam. There's something about short hair and there's short hair. You rocked it. Very nice make up too. Go forth onto the pages of Vogue. 
  • Emma17
    Emma17 Member Posts: 46 ✭
    edited June 2019
    AIs have been deployed for ER+ for over 20 years and not much innovation since, despite the billions of dollars spent in research in that time.  The standard 5-year follow-up period is as much for our health as it is data collection and surveillance.  If we cross the line NED they pump the air and tally a 5-year treatment 'success'.  I am not a person, I am merely a dataset.
  • AllyJay
    AllyJay Member Posts: 957 ✭
    I think of this whole 5 years or 10 years is deemed a cure is a total furphy If I was in prison where there was the death penalty, and I was told that a judge had been soft, and had commuted my death sentence to life in prison, that means forever. If my sentence has been reprieved, it means it still stands, but that it has been delayed. They can and probably will still fry me in the electric chair in five or ten years time. Medically speaking, a cure should mean just that...a cure...it's finished, over, it will never come back. The other is remission, not cure. The statistics are all I feel they are interested in, so they can swan about at their next big Oncology seminar, at some fancy location, trotting out their five year statistics, followed by their ten year ones, whilst giving each other high fives, or clinking their champagne glasses together in mutual admiration.
  • Artferret
    Artferret Member Posts: 259 ✭
    I liked your comment @kmakm I'm no longer looking for solutions, there aren't any. I came to that conclusion not that long ago after hitting my head against so many brick walls trying to find one. And in a weird way i feel more settled about it. My husband asked me a couple of days ago was i ok with my decision to have a break for 2 months. I think he was worried that I'd be having second thoughts.  Nope, no regrets, no stressing over have i left the gate open for bc to return. Just totally enjoying the mobility that is starting to creep back in. I thought there would have been more active interaction, Kate, between you and the medicos rather than just each person presenting their part and kept expecting you to jump in with a comment here and there...time constraints...it would have gone for much longer but i feel it would have been more useful.
    It was good to hear @Blondy that anastrozole is working better for you. It gives me a bit more confidence to try it when my holiday finishes. 
  • Patti J
    Patti J Member, Dragonfly Posts: 589
    Taking Tamoxifen does not give any guarantee that a person will not get a recurrence.
    Exercise does not decrease your risk of getting a recurrence.
    As ever, the talk centred on early stage breast cancer.
    I take Letrozole. I do not now have early stage breast cancer. 

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