Hormone therapy, is it worth it webcast
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As @iserbrown says - don't be afraid of trying another AI, @Artferret. I am on my 3rd now - with only Tamoxifen left if Anastrozole/Arimidex goes belly up! I started on Letrozole & only lasted 6 weeks, the side effects were so bad. Then I had 6 months on Exemestane before reaching a similar level of continual pain. I've been on Arimidex for a month now & am not finding it TOO bad, so far! Tho the hands are still a problem, particularly the thumbs - my left thumb is the worst!
@Sister - I didn't hear the mention of enobosarm .... do you have any links to info about it?
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No, they didn't talk about it. It's a SARM class of drug that has been used for mets I believe but it's being trialled as a replacement for Letrozole, etc. It doesn't have the joint pain side effects.0
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@Sister ..... I've never heard of that one!! Where did you learn about it? Maybe it needs it's own thread?
Sounds like it should be fast tracked!!
I'll put my hand up for that trial!!OSTEOPOROSIS DRUG SHOWS NEW PROMISE FOR BREAST CANCER
April 16th, 2019Estrogen receptor-positive (ER+) breast cancer affects over 65% of women with the disease. Unfortunately, it is also common for ER+ tumours to become resistant to first-line ER-targeting drugs, a phenomenon known as endocrine resistance. It is thus important that new treatment options are developed to treat these resistant cancers.
One class of drug that has raised great interest in breast cancer treatment is the selective androgen receptor (AR) modulators (SARMs). Enobosarm is one example of a SARM – an early impetus for developing SARMs was osteoporosis. SARMs work by stimulating androgen receptors in a similar way to natural androgen hormones. However, unlike androgens, enobosarm does not have masculinizing side effects in women.
A recent Phase II clinical trial showed that enobosarm was effective at treating metastatic ER+ and AR+ breast cancer, with patients reaching stable disease. So far this is the only new generation AR targeted therapy to achieve this outcome. The drug was well tolerated and not associated with any toxicity. The Phase II study looked at dosing and safety, and was the only AR target therapy trial where the endpoint was achieved.
Another study is now underway in the UK, called the Emerald trial, which is examining whether enobosarm is also beneficial for women with newly diagnosed ER+ breast cancer. If so, this drug could then be a potential treatment for both early and late stage disease, providing patients with more treatment alternatives at any stage of their journey.
Professor Wayne Tilley from the Dame Roma Mitchell Cancer Research Laboratories at the University of Adelaide has contributed critical research findings that led to the new clinical trial, the Emerald trial, and is excited about the potential of enobosarm and other SARMs as treatment options for breast cancer.
“Our data show that activation of androgen receptors with enobosarm (or a similar drug) can inhibit tumours that are endocrine-resistant,” he said. “This opens the door for a new treatment avenue that could significantly prolong life.”
Professor Tilley emphasised the importance of patient well-being whilst being treated for breast cancer. ER-target treatments for hormone-sensitive breast cancers are often associated with debilitating side effects, leaving patients feeling miserable and even ceasing to take the therapy.
“We have been advocates for SARMs because they not only have the potential to prolong life, but they have the potential to make patients feel better while on therapy,” he explained. “This reduction in negative side effects is because the drugs promote bone, muscle and brain health.”
The pilot study of enobosarm was funded by the NBCF in Australia. Professor Tilley thanked the supporters of his work, saying “Funding from the NBCF is a vital part of our research program. Thank you to the NBCF and the patients who contributed to our studies for supporting our efforts to provide more effective and tolerable means to treat this disease.”
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This is interesting and I'm wondering if this is why also that Prolia which is used for Osteoporosis offers protection to Breast Cancer as they cant explain how it works but it does. Ive been on injections for 3yrs.2
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@arpie I did put a post up about it a few weeks ago. That's interesting @melclarity0
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@artferret, I only had Letrozole at the start, for 6 months. Horrid. I was put on Anastrozle and yes you do swap side effects but these I can live with and are minimal. They all do the same thing but some just don't suit us. You might me pleasantly surprised if you changed to another. You can always go back.3
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The article that @arpie posted was the sort of thing I was expecting to hear from the doctors in the webinar. I posed the question before and on the night, is anyone researching better hormone therapy drugs, and it was ignored.
Why don't they hear us better? Acupuncture and hypnosis. That's all we got on the night. Nothing else was canvassed (I'm ignoring the medical marijuana question because we wanted to know about CBD oil).
We want to take the drugs! We want to do everything we can to stop cancer recurring.
"...debilitating side effects, leaving patients feeling miserable and even ceasing to take the therapy."
I am left feeling the same as before, unsupported. Active treatment over, here's some horrible pills that may help. You're on your own now, away you go dear.
I don't expect my hand to be held and I accept that this is the best we have for now, but ffs answer our questions, help us understand, support us to do something difficult, and above all else, communicate with us.
I get more information and support for breast cancer from participating in this forum on my fricking mobile phone than anywhere else.
That's why when asked to sum up a response to the webinar (a question without notice) the best I could muster was you have to be very determined, and to advocate for yourself. So many doctors it seems, for whatever reason, can't communicate what we need. It's all on us, as individuals, to fight for what we need, information, options, anything.
It is sometimes brought to my attention that people feel sorry for me.
Don't feel sorry for me. Help me. Help us.
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Unable to sign in from my pc but the mobile works wonders. @arpie. We have the same thumb problem. It got to the point of being a very painful trigger thumb, first joint. Couldn't open doors or change gear in car without pain. Hard to hold a lot of things that were heavy too. I bought a figure of 8 contraption that was very comfortable, and I could still do everything. Took away the pain It hurt more when I took it off. Duh. I have for a while been taking Glucisamin sulfate 1500 once a day. I don't know if it's to be blamed but the last 2 weeks it's getting better and today I can fully bend the end of my thumb down and the base of the thumb is normal. I'll keep swallowing them.4
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WOW! Glad the glucosamine is working for you @Blondy. I've tried it in the past without success.
I am SO with you re the pain, discomfort & sheer 'droppiness' of anything I try to lift up/hold. I can't even release the hand brake on the car - having to use either my forefinger or my other hand! And definitely can't bend it at all - it just goes 'forward' like a stiff plank.
@Sister - I must have missed your post. (In hindsight) I saw that @Romla had mentioned ostarine (brand name of Enobosarm) in this post but I didn't really realise the benefits it may offer!! https://onlinenetwork.bcna.org.au/discussion/comment/170909#Comment_170909
Professor Tilley is in Adelaide ...... maybe it would be worth making contact with him??
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@Sister it is interesting, Dr De Boer told me 3yrs ago that Prolia works in conjunction with an AI and gives added protection, my Surgeon told me the same thing, so it's obviously something well known among the medical profession. I've always communicated the side effects to the Oncologist but he's never offered a solution, other than don't take it and yes unfortunately there are side effects. He explained how the AI works and in conjunction with an an unnatural menopause enhances the side effects. So Im wondering anyone out there who was already well into menopause and was put on an AI and if there is minimal side effects??
I do believe and I know this for me, it is a combination of chemo, unnatural menopause and an AI thrown in that causes my pain side effects. However, increased levels in the liver, cholesterol and blood pressure are all attributed to the AI. Not to mention WEIGHT GAIN which is horrendous!!! and NO helpful information from the Oncologist!!!0 -
Thanks for the tip @Blondy, re the trigger thumb you mentioned to @arpie . Will get some tablets and see how they go. It is so painful. I got a thumb brace last week to keep it straight but then you when you take it off it's even worse so gave it away. Even the pain goes down to the base of the thumb on the palm. How did you go as a hairdresser holding scissors. I am slowly going back to work and I cook for a living so am really wondering if can do what I do. ( I have been given easy jobs at the moment ) But even carving a roast at home or chopping and peeling veges ouch!! so I hear you. I tend not to complain generally to anyone as am just grateful to be here but boy it affects everyday living. ( and trying to move it first thing in the morning OMG
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....So I'm wondering anyone out there who was already well into menopause and was put on an AI and if there is minimal side effects??...
@melclarity - I went thru 10 years of menopause from age 45-55 (with really bad 'side effects') and then another 'OK' 10 years to age 65 prior to being diagnosed with BC & being put onto AIs - and I reckon I still got all the extreme side effects! grrr
@kitkatb - I am back to wearing a brace again on my left hand thumb, as it has been really painful. grrr I even sleep in it. It prevents me from accidentally bending it or knocking it. I am inventing all sorts of ways of holding stuff, lifting stuff, putting on clothes - there are so many facets of every day life that it is impacting badly.
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@kitkatb it's in my left thumb so no problem at work. I had an ultrasound and it's the thickening of the tendon which can have an op to cut it. Supposed to improve it, maybe that's what frightened it into getting better. Or injections. The chemist told me Anastrozle it can cause carpel tunnel. Surely oncologists know this too and could tell us instead of wondering what the hell. I find out more from everyone on thus forum. You're all great givers of info. Loves y'all2
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@arpie thanks for sharing that! that helps shed some light on what Ive been told. I find it absolutely incredible that as a community there is such an obvious problem with AI's with nobody willing to step up and address it or find a way to work with it. Astounds me! It really is about them and their stats clearly...because Im guessing once I hit 5yrs clear, he'll pull me off and then say see you later. Hard to not be cynical really and I think as we all reflect on our own paths to here, no medical professional has the RIGHT to underplay the reality of this medication and anybody who hasnt been through BC or walked the path or taken the meds have any real understanding...just their opinion.
Ive been down the path of the thumb pain and I dont have it now but Im on Aromasin, which is chronic as its a steroid!!! OMG!!! it is literally ridiculous! the weight gain and they do not care at all! In fact they just say eat a good diet and EXERCISE haha!!! ohhh can so do that with the side effects. They don't realise they set you up to fail in a respect. Anyway, thats all folks.
Everyone is absolutely different, I had zero side effects on tamoxifen for 4yrs. It was only post treatment and Arimidex and Aromasin that have been pretty tough, Letrozole is all I have left now. The Oncologist said that they are all the same BUT we all react differently so we may find side effects a little less on one...which one? its a try and see.0
