Hormone therapy, is it worth it webcast
Comments
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I totally agree @Sister. While I think it might have been OK for someone coming off a low base of knowledge, for those of us who have been battling for a while it was not remotely helpful. My questions were not answered. If the format had been different, and there was time, I would have asked a lot of questions and dug a lot deeper.
I'm seeing my oncologist on Tuesday and will ask her some of these questions.1 -
OMG @Artferret I was biting my tongue SO hard. I cannot emphasise how many times I wanted to interject with a question or comment, to dig deeper. Itching! I was positively itching!
I'd like to suggest to @BCNA that they host a podcast with the same people that can function as more as a conversation, more back and forth.
What year of endocrine therapy are you in @Artferret?1 -
Hello Kate @kmakm
Thanks for your feedback Kate, you are right, the webcast last night was really popular and the information presented was pitched at a certain level to accommodate most participants. From what I understand the webcast went over time and we are looking at having another one to help answer more of the questions that were presented. I have forwarded on your feedback to our webcast team and will keep the online community posted regarding any updates.
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@arpie My questions weren't answered at all. Unfortunately Kirsten asked about "medical marijuana" rather than CBD oil.
It was just all too general, a starter pack rather than the in depth discussion we were all looking for. I was asked to provide a list of questions a couple of months ago, which included the ones I asked yesterday, and more. I was complemented on these but I suspect somewhere along the line a decision was made to keep the webinar more generalised.
I can assure you that in the room the oncologist did not come across as condescending. Strictly speaking, he answered the posed topic, 'Hormone Therapy - are they worth it?' Perhaps another @BCNA webinar is in order: 'Hormone Therapy - helping you cope'.
I really think there are no easy answers here. ER+ cancers eat estrogen. Stop the estrogen, the cancer starves. AIs stop estrogen. End of story.
I expect one day they'll work out a different method of preventing BC from growing and that will replace AIs. As the research hones in on individual tumour characteristics and response, I think we're looking at more personalised treatment in the future. Just as my mother looks on in amazement at the treatment options I have compared with hers 33 years ago, 33 years from now we will probably do so in the same way. But for now we're stuck with them because it's the best we've got. Much like chemo.
My lower legs and hands are killing me today. I'm off to throw down some more painkillers. K xox1 -
Thank you @Giovanna_BCNA. I think last night was Hormone Therapy 101. To borrow the American vernacular, we need AP Hormone Therapy. A podcast or another webinar.0
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Yes @kmakm. I take it in combination with Palbociclib.
17 years ago, when I was 47, I was diagnosed with invasive ductal carcinoma, I was given Tamoxifen. I actually have the sheet that I was given at the time.
It states that, with chemotherapy, because I was less than 50 years old and node positive, there was a 15% reduction in recurrence at 10 years. There was a 12% improvement in survival at 10 years.
There was a maximum benefit of Tamoxifen if given for 5 years.
There was a 15% reduction in recurrence at 10 years and an 11% improvement in survival at 10 years.
If only our bodies did as the statistics say they should!
I was also offered an oophorectomy which I declined. I have quite severe scoliosis. My mum and grandmother both had severe osteoporosis. My back is very misshapen but I stand very erect. I was not prepared to risk broken bones as my mum had experienced.
I am certain that I made the correct decision because even though I now have severe generalised mets in my bones, I have not broken any bones and I do not have any pain.
None of the side effects have been eliminated for those taking Tamoxifen. These included: hot flushes, vaginal bleeding, vaginal discharge, pruritis vulvae (itchiness), light headedness, skin rash, alopecia, occasional fluid retention and infrequent cases of endometrial, occular and haematological adverse events.
How far have we come in 17 years????
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Hormone therapy, is it worth it??
What an open ended question.
As you start out the treatment and guidance offered suggests that it is!
Once you are in it then the confusion starts. For some of us it's pre-menopause, peri-menopause or perhaps menopause itself induced by medication rather than menopause taking it's natural path.
Add to it the anxiety of diagnosis followed by scanxiety and then the wretched side effects. Not everyone suffers and some are fortunate for very few if any!
The topic is endless
For those starting out hopefully you'll have a good run at it and the benefit of some of the experiences on here. My Medical Onc is very helpful and clear in explanation. He doesn't make me feel like I am part of a dataset.
I'm on a steroid based AI which is working with a couple of side effects I'm living with. It's taken over 4 years to get to this point of yeah I can cope and I won't say how many kilograms extra but I am here mostly content certainly accepting and looking forward to putting it behind me.
Take care
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One of the questions I asked was about enobosarm and where it might be heading as an alternative to Letrozole (although to be fair, I don't know whether the question got through as my connection had one of it's fits around then).1
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Dear @kmakm and all, Thanks very much for all the further information and analysis about the webinar - very interesting. Dear @Giovanna_BCNA, that is good that you have sent feedback to the webinar people. Further webinars will be very welcome. When you advertise events, please can you always put an 'announcements' notice on the first page of the network? A lot of network members may be like me, and go straight past the BCNA main page to get to our discussions!
I wonder how many people did take part on Thursday? Best wishes to all0 -
@kmakm
Hi Kate I've lasted on letrozole for 19 months before desperately needing a break. Only last night my hubby said he could see how i was suffering in the past month due to my shoulders and neck area in total meltdown. But i was determined to last till June...i nearly got there...i made the executive decision to start 4 days early. I still marvel at being able to move more easily or better still not having to think about it. My hands will take longer. My onco has offered for me to swap drug but i feel like I'm swapping one lot of side effects for another lot...not much point.
I thought you might have to restrain yourself! I think as someone else said a session on how to cope with endocrine therapy would be good but i think the strategies for coping would be better coming from people at the coalface, as the medicos don't seem to have any solid answers.
The one thing I'd like to try whilst drug free is to up my weight resistance workout (go to gym a couple more times just for that) to strengthen my body further and see if that has a positive impact when back on the drug particularly as i was no where near this fit when i started on the drug. Take care Cathxx1 -
@Artferret
You may be surprised by changing AI. I have and my side effects are minimal now! We are all different however for me it has been a success! Hopefully you will find a better way as at present your comment desperately needing a break suggests that it may be the same when you go back on it!
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