Duration of endocrine therapy in premenopausal Australian patients
Hello all Very long time since I’ve poked my head into this discussion forum. I’d like to hear what other younger pre-menopausal patients around the country are being recommend regarding duration of total endocrine therapy. I myself am now onto year 6 of ovarian suppression and AI, a choice I have continued although I could have switched to tamoxifen alone. Please comment with your doctors advice and your stage/diagnosis. Are you doing: 5 years ovarian suppression and aromatase inhibitor 7 years ovarian suppression and aromatase inhibitor 10 years ovarian suppression and aromatase inhibitor 5 years tamoxifen +/- ovarian suppression and then further 5 years ovarian suppression and aromatase inhibitor 10 years tamoxifen alone
Lower dose tamoxifen
I have taken tamoxifen 20mg for 6 years,I have now had a year off tamoxifen as I stopped taking due to side effects, my oncologist would like me to persist and start taking it again as I’m in my 40s and he considers this young. my surgeon said I could just take less,he said there has been research that says it may be as effective,or I suppose it’s better than not taking it, has anyone doctors been happy for them to take less tamoxifen than 20 mg? And if you take less have you noticed an improvement in the side effects? If so do yo take 5 mg or 10 mg a day?
Using 'the oil' for Exemestane side effects
Hi there, I'm curious to hear from people who've been using 'the oil' to treat side effects of hormone therapy. I've noticed people don't say the actual name of it, assuming it gets flagged?! To cut my long story short... Diagnosed in June, mastectomy in July, radiotherapy in August/September, and then started hormone therapy September/October. I'm on Goserelin every 28 days, plus Exemestane daily. I'm told this is the plan for the next 5-10 years. However, my joint, ligament and muscle aches are horrible! I've read similar side effects from others on here - where there's a joint, it aches, particularly overnight - I didn't even know elbows and knuckles could ache! My feet are so painful to walk on any time I get up from sitting/lying down. I'd heard a few people say the oil has helped them with these side effects. I've been taking it for 5 weeks now and am quite disappointed that I feel very little effect. I'm taking Altreleaf C B D 100 ISO - 100mg. I take 0.5ml in the morning, 0.5ml at lunchtime, then 1ml at 8pm. He gave me one containing T H C too (because I asked for it ;-) but I can't really use it as you can't have it in your system at all when you drive. I'm 46 and a mum of two young girls so driving is a pretty essential part of my daily life. I'd love to hear it others have tried the oil and had similar disappointment, or any success. I'd also love to hear from anyone who's been on Exemestane and changed to another drug - because I'm told it's brutal and not many women stay on it. I'm thinking my only option really is to switch to something else but worry it'll be the same! Thanks in advance!
Letrozole aches and pains
Hi everyone, I hope everyone is having a good day today :) I was put on Tamoxifin in March after my BC treatment, and then I found I had PALB2 so I had an oophorectomy and my Onc changed my meds to Letrozole now I have no ovaries. My sister in-law is a naturopath and kinesiologist and after all my chemo and radio she tested me and gave me a herb concoction to "clean up the mess". I told her what ever she gives me needs to be hormone free and compliment Letrozole, she has treated many cancer patients before and said all is ok. So, I was feeling ok, well, as ok as you can be for being put into chemical menopause, you know, hot flashes, a few aches and pains, brain fog.. hmmm maybe a bit more than a fog :) not great but I was managing, so my Onc says she isn't happy with me being on the herbs, she cannot know if they are still giving me hormones (or what ever it does) so she told me to stop, she said my body basically needs to go cold turkey on hormones and she needs to be sure nothing is effecting my medication. So, I went off them straight away and literally a week later....hoolie doolie I feel like I've been hit by a truck! My aches and pains in my back, legs, elbows, shoulder, neck are horrible, my legs have that tight tense feeling like they are just about to cramp...all the time! Sleeping is almost impossible, either waking up and staying awake or waking up and tossing and turning from my legs being so restless, and my ears constantly ringing all night. I wonder if those herbs were amazing and helping me through this or they were hindering the hormone therapy. I wish we had a way to find out. I really don't like feeling this way and the lack of sleep just effects everything else in my life and I just feel like I am complaining about my aches and pains all the time. I don't have another appointment with Onc for 12 months now, BC surgeon in 4 months. So my question is...does it get better? I am 3 months into a 7 year course. I am doing light exercise with light weights 4-5 times a week, eating pretty healthy, but I seriously feel like I can't stand, sit, lay, squat down, get back up...anything with it hurting like I have done a 3 hour intense workout and over done it and all I can think right now is that 7 years is a long long time!!! Any advice or feedback will be greatly appreciated, be it good or not so good :) Thanks for listening Sam
Letrozole and GERD
Was taking Letrozole for 13 months when I started getting severe pains around my breast bone (like an alien trying to burst out). I thought it was my heart. Medical oncologist felt it was the Letrozole interacting with my diagnosed GERD and told me to stop for a month then try Anastrozole. Over that month the pain slowly left leaving me very relieved to know I wasn't having a heart attack...lol Been on the new med for 10 days and so far so good. No side effects (touch wood). When I started Letrozole I had hot flushes, joint pain, headaches, immediately. They eased off to just very occasional hot flushes but an enormous weight gain (12kgs). Fingers crossed this new medication is much kinder to me.
Aromatase Inhibitors
Just need some help in deciding on the next step, in Feb I was diagnosed with IDC ER, PR + HER2-, & DCIS in my right breast, no lymph nodes involved. I had surgery & have just completed 15 days radiotherapy & got quite a bad burn area under my arm around the outer breast. I am using Flamigel, salt water flannels to cool & was prescribed some steroid ointment by my GP for burn area. I'm waiting to see how the next 10 days go. Then comes the next hurdle, how do I decide whether to go on hormone therapy or not. I am 73, I was on HRT right up until the diagnosis as I had osteoporosis diagnosed at 49, I have had osteoarthritis since my mid 40s & need a knee replacement, I have a family history of high cholesterol & heart disease, I have Factor V Leiden blood (sticky blood), & have 3 surgeries to remove uterine polyps. I have gastroparesis, & I take several medications already including Palexia tapentadol. I am very tearful (but only when I'm by myself), I'm having trouble sleeping, keep getting hot & cold, & by June I need to decide if I should take medication that may thin my bones & make my joints even worse, & increase my risk of heart attack or stroke. My husband can't see the problem & says just take it. My daughter says the same. I know I am lucky not to have needed chemo, I know I am older when cancer can be expected, I know I will have to die of something, but in my head all I can think about is why would I take a medication that will possibly make all my current problems even worse, just in case breast cancer returns. How do I stop cancer returning if I refuse hormone treatment? Can anyone help with advice?
Angela Brodie - the story of the lady who 'invented' Aromatase Inhibitors!
Before Aromatase Inhibitors were made available to women to suppress oestrogen production that fed their Breast Cancer ..... the most common procedure for women with breast cancer was Radical Mastectomies. Angela Brodie was a giant in the world of breast-cancer therapy. She discovered and developed the first selective aromatase inhibitor — a drug that blocks the synthesis of oestrogen, which fuels the growth of breast-cancer cells. Such treatments have saved the lives of hundreds of thousands of women; a third generation of the compounds are now the drugs of choice in postmenopausal women. Angela was determined to change that - and change it, she did! An interesting read: https://www.nature.com/articles/548032aManagement of Aromatase Inhibitor–Induced Musculoskeletal Symptoms
There are plenty of Oncologists who STILL dismiss side effects from AIs (Aromatase Inhibitors) as either being a figment of our imagination, or they say/think the side effects aren't as severe as we advise them ..... just print this off & give it to them. They may learn something! Aromatase inhibitor–induced musculoskeletal symptoms (AIMSS) were first recognised as a distinct entity in 2001, 5 years after the approval of the first aromatase inhibitor, anastrozole. (I reckon Carpal Tunnel is about the only symptom/side effect I HAVEN'T had over the last 4.5 years from the list below ....) AIMSS can have a protean presentation, most commonly including joint pain and stiffness (including morning stiffness), but also carpal tunnel syndrome (CTS), tenosynovitis, myalgia, and muscle weakness, such as reduced grip strength. Symptoms can be continuous or intermittent and can involve more central joints (spine, hips, shoulders), peripheral joints (elbows, wrists, knees, feet), or both. You can Read the full report here: https://ascopubs.org/doi/full/10.1200/OP.20.00113
AIs - questions to ask
Hi everyone! I have successfully completed my surgery (03/02/23), and radation (13/04/23). I'm seeing the oncologist tomorrow to discuss/commence AIs. Does anybody have a good list of questions to ask? Or were there things you did ask at your appointment which were useful? Or things you wished you asked initially but didn't? Thanks for your assistance!
