@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?

Not having any operation on my thumb anytime soon. I at least checked it out via xray and ultrasound. Now what did it do. Got better. I'm about 90% using it. Only got it since taking Anastrozle. I seem to blame everything and anything as a result of all the treatments. If it rained purple polka dots, you know who I'm going to blame. Thank you @Sister for your advice. I'm a hairdresser with 3 years left on my lease. I'll hobble on till then. Lol. There would be enough of us telling our oncologists about side effects, plus how we deal with them, that put into the melting pot would make a good discussion on hormone therapy. I would like to see more women having a voice, being listened to, and getting relevant answers for the greater good on a Webcast. I expect it's costly to Webcast. On Facebook you can go live for free. I didn't get anything much out of the Webcast except to reaffirm I'll stick with it. My major challenge after a half hour car drive as a passenger, is to alight as gracefully as is humanely possible when in fact I can hardly move my back, and then, walk off like a model on a catwalk, wracked with pain until I get going. Tomozzas another day. Keep shining like a diamond and sparkle like champage. Xx

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.

@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 CANCERApril 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.”

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.

Just listening to it now as I type! Well done Kate - a very measured, non emotional diatribe!! And especially well done for no apologies!! You were the clear winner on the night!! I don't think I heard the answer tho to your question re "What is done with the anecdotal evidence of side effects that patients give their Onc? Is it passed on to the manufacturer or researchers to 'research'?" Maybe I missed it.I agree with @Sister - they didn't really cover the side effects & how to minimise AI side effects at all (tho I am listening to it again right now!) - which is strange, as that is basically why we all logged on to listen to them in the first place! I heard the acupuncture & hypnotise bits towards the end .... He went thru the list of side effects that HE's heard (at the end of his spiel) and basically shrugged his shoulders as well!! :( I almost 'heard him' roll his eyes too! So yours was the 'bigger list', Kate!! No - it was actually a more complete list!So re prednisone - he says joint pain with AIs is a 'short term problem - only whilst you are taking it!'! HELLO?? I wouldn't call 5-10 years of joint pain 'short term'!! Maybe we need to nobble his hips, knees & hands & see how long HE can stand it??"If you need 'that much intervention - is this the right drug for you?' " HELLO? What are the other choices once you've been thru all the different AIs?? NONE!There is PLENTY of anecdotal evidence that Medicinal Cannabis Oil IS benefitting cancer and arthritis patients - LOTS of shoulder shrugging & rolling of eyes there!!My thoughts - ANYTHING that will make the side effects 'acceptable' so that we actually STAY ON the meds for the required period of time (or even longer if that may be of further benefit .....) is the path the researchers should be going down. I wonder if they even KNOW the percentage of all the drop outs from AIs treatment due to all the side effects?Be it CBD Oil, acupuncture, hypnosis or any other 'alternative' methods - if they help you stay ON the treatment - it has to be a good thing, altho admittedly, still no guarantee of of not getting a recurrence.

Hormone therapy, is it worth it webcast

76 Replies

Cassina
Member
7 years ago
agree, the podcast was great, but did not address how to deal with side effects, other than if they are too severe, stop the Tamoxifen. Surgery alone he said may stop cancer returning. This is not what you hear from others whose cancer has returned, despite Surgery, Chemo, Radio, it seems to be just bad luck
jennyss
Member
7 years ago
Dear @melclarity, Thanks for your post above about Dr De Boer recommending a drug holiday/change, and links to your posts in 2017. I just read them - Very relevant then and now! And hear hear to your comments about 'needs to be substantial studies done and medication improved dramatically'.
I am going to have a look at the link @Emma17 included in her post ' ASCO 2019 - Aromatase inhibitors - Women need better treatments for side effects'.
A sunny, breezy and cold winter day here. I've been for a brisk walk and now I'm keeping warm inside.
Best wishes from jennyss in Western NSW
melclarity
Member
7 years ago
@jennyss So Dr De Boer does go by having a holiday off the medication and recommends it for most of his patients who are struggling, purely to see if it is the medication or other components. I put up a post in 2017 having just done that..

https://onlinenetwork.bcna.org.au/discussion/16116/6-weeks-trial-off-arimidex-has-finished-as-requested-by-oncologist

https://onlinenetwork.bcna.org.au/discussion/16432/oncologist-checkup-yesterday-am-pulled-off-arimidex-and-now-on-aromasin-any-ladies-on-this/p1

Somedays I find worse than others, but Id have to say overall Im not too bad, Im seeing him next month and am undecided whether to change to letrozole or stay on this for 18 more months then im done. My main motivator to change is Aromasin is steroidal and stores fat in the LPL cells, so you cannot lose weight no matter what you do. Letrozole is not so feel I can try and change it with that.

The Oncologists semi acknowledge the side effects but theyre more focused on treatment and survival unfortunately as thats success to them, which I understand from their perspective...but from someone living through it?? there needs to be substantial studies done and medication improved dramatically.
kmakm
Member
7 years ago
Thank you so much @jennyss!

Yes, overall it was a bit disappointing, the emphasis on 'is it worth it as per the stats', rather than 'you take it because you accept the stats, but does the loss of quality of life make it worth it for what may only be a small gain'.

I have suggested another one focussed more on managing the symptoms, or maybe a podcast so we can be conversational around the topic. Fingers crossed. K xox
jennyss
Member
7 years ago
Dear @kmakm, I watched and listened to the webinar today - luckily all the slides and sound worked for me. Thanks very much; you put important issues bang in the middle of the table. Your experience with letrozole side-effects was put clearly and strongly. You advocated for the negative experience of many network members with AI side-effects. You asked what happens to the information/records of us BC survivors and now AI consumers in regards to side effects. This was not answered.

I thought Dr De Boer's talk focussed on 'hormone therapy is it worth it' in connection to studies which show increased survival rates, and how long the AI's should be taken.
Professor Hickey seemed to view things through a 'menopausal symptoms' lense. But later, during questions, Dr De Boer mentioned studies where it was measured the effect of people taking a 'drug holiday'. It was interesting to hear that a six week drug holiday (once a year??) does not effect recurrence/survival rates, and sometimes side-effects don't come back quite as bad after the AI's are started again. He also seemed to say something about a drug holiday showing whether symptoms were medicine side-effects vs chemical menopause??

Perhaps I'm being a bit critical; but I do appreciate BCNA organising this webinar, and the information, opinions and time of Dr De Boer and Professor Hickey, and we'll look forward to more webinars in the future. But most of all I appreciate your input Kate - you are the greatest!
Blondy
Member
7 years ago
Thank you @arpie for those slides and being able to work them out at my leisure.
Annski
Member
7 years ago
Yes I was going to say something about the outdatedness of those figures but they seem to go on relying on these huge population surveys which are more statistically valid but don't take into account all the recent changes in approach and treatment. Maybe they've stoppd collecting those kinds of stats for some reason. But there was good info there I hadn't seen before about length of time to recurrence, as you mention. Anyway it was great that you were so clued in about using the technology. A. xx.
melclarity
Member
7 years ago
I agree could they be anymore confusing? not sure how it equates when he told me that tamoxifen doesnt work in 1/3 of patients and its widely documented. I didnt make the 5yrs not with radiation or tamoxifen doesnt make any sense. Not even he can explain it :/
arpie
Member
7 years ago
I am sure he could have found some more recent ones than 10 & 20 years old, tho @Annski !!

And to be totally honest - I had difficulty 'following them' myself!! :( Tho it would appear that those who were ER- have a much greater chance of earlier recurrence than ER+! :(
Annski
Member
7 years ago
Good on you @arpie thanks so much. I am not sure I would have seen these slides otherwise. Wanted to follow the whole broadcast but it's hard on my Kindle which is mostly where I do the Network thing. Now to understand it! Cheers to all - well as far as is possible ... Hugs anyway!