Hormone Therapy
I had a double mastectomy two weeks ago and need to take letrizole. I have also been told to have a bone scan and PET scan. I have a few questions, firstly, when should I begin taking letrizole, do I wait till I heal more or start now? I am worried about the side effects while I am still recovering from the surgery. I have the same question with the two scans, (bone density & PET) should I do those now or wait till I have recovered more from the surgery? I know I should have asked my surgeon at my last visit, but I was concentrating on her explanation of the pathology results and didn't think of it. The last 5 weeks since my diagnosis has been a rollercoaster of emotions and I still shake my head that I am where I am! I know that I tend to worry about the 'what ifs?' too much, and probably delaying all the inevitable instead of just getting on with it. Thank you for your advice.
Letrozole or Tamoxifin?
Hi Fellow Hormone blockers :-) Really need some advise , my situation 60yrs old with thin bones Had 15cms DCIS removed via mastectomy and a 5mm invasive cancer. The oncologist is giving me the choice between the 2 drugs for 5 years. If I was to go on Letrozole it will thin my already thin bones so would need to go on a drip 2 times a year with a bone strengthening drug in it also need permission from the dentist. Tamoxifin apart from the similar side effects it also can cause blood clots and uturus cancer, Im really conflicted. The oncologist is going to mail a lot of material out to me then in a months time we will make a decision. I really wanted to talk to the real people taking these drugs, your experience and if you have been on both your preference? Appreciate your help with this decision :-)
Tamoxifen - any good news stories?
Hi all, I'm 54yo, just had a single mastectomy and my prognosis is looking good. Oncologist is just waiting for the Endopredict to return a result but is hedging towards Tamoxifen or similar. The more I read the more I'm stressing about taking any of these drugs (my mum was on it 40 years ago and from memory, it wasn't pretty). Are there any good news stories out there? or is it terrible for everyone? Thanks P
Hormone Blockers Weight gain & GLP-1s
Hi Everyone, I am 53 yeards old and 3 years into hormone blockers and am managing (barely) all the side-effects except for one. Weight gain. I have always been fit and active and I am working out more than ever and eating incredibly healthy and nothing seems to make a difference. I have slowly increased from a size 10 to almost a 14 since commencing hormone blockers. I have seen some medical evidence that GLP-1's at a low dose have been helpful for not just weight loss but also a reduction in other side effects as well. Has anyone else had a conversation with their oncologist regarding using GLP-1's and potential benefits? I don't like the thought of taking yet another drug but I am getting to the point of worrying about everything I eat and also cannot afford to keep buying another size up! If anyone has any info on this topic or knows of any specialists in this space I would appreciate it very much, Thanks!!
Zoladex 3 monthly available but not PBS covered for women
I wanted to share something I recently learned as it might help ease the burden of regular monthly injections. I recently learned that the goserelin injections many of us have monthly are actually available in a 3 monthly dose (10.8mg). I was a really hopeful thinking this could significantly reduce the stress, time and cost that comes with needing to have an injection every 4 weeks. However, my Med Onc informed me that in Australia, the PBS doesn't subsidise the 3 monthly dose for women, although it does for men (prostate cancer). The reasoning given that there's `insufficient evidence of reliable suppression of serum oestradiol' in women. What doesn't make sense is that there is evidence suggesting otherwise. Recent research indicates that the 3 monthly dose is non-inferior to the monthly dose for pre-menopausal women with breast cancer in terms of ovarian suppression. For me, the monthly injections come with a real burden: financially - GP visits and medication add up every month time wise - frequent GP appointments and pharmacy trips take time out of the week. physically and emotionally - injection itself is painful, it's a large slow release implant into the abdominal subcutaneous tissue. The main alternative - surgical removal of the ovaries is obviously much more invasive and comes with it's own risks and long term consequences. Given that the 3 monthly option is already in use, clinically tested and could ease the burden for many of us, I would really like to see equal PBS access for women. I'm curious, has anyone else looked into this and how to go about taking action?
Giredestrant - SERD
Hello there, Reading the news coming out of the San Ontonio Breast Cancer Symposium this year (happening right now) and there is a very positive, yet early, study on a new SERD on Early stage BC in the Lidera trial. Does anyone know about this or is part of the trial? It seems that there was recruitment in Victoria? Keen to hear.
Zoladex
Hi, so I’ve just been started on zoladex and I’m wondering about side effects. I feel like I suddenly have IBS or something. I’m going to the toilet 5-6 times a day. Everything I eat is giving me stomach cramping, almost like continuous period pains. I also feel nauseous a lot. Is this normal? Has anyone else experienced this? Does it calm down after a while? I’m scared to start taking the letrezol as well now in case it all gets worse. I was sent home from work today, first day back, because I was doubled over in pain from the cramping. It’s ruining my life and it’s only been 2 weeks.
Nausea after 3 days on Exemestane?
I tried Exemestane for 3 days and felt really nauseaous and stopped taking it. Nausea went away next day. Has anyone else had this side effect after such a short time? I found one old post on Reddit saying the same thing. My oncologist questioned that I could get such an extreme reaction after such a short time.Letrozole - compound pharmacy
Hello I was wondering if anyone has had any luck with getting Letrozole made by a compounding pharmacy to reduce the fillers and preservatives that come with the commercial Letrozole? I am about to start Letrozole and am trying to minimise side-effects as much as possible from the get-go to increase my chances of staying on it - I am very sensitive to meds, preservatives, etc. With that in mind, I’m very interested in hearing people’s stories and experiences with compounding chemists and hormone therapy. Thank you all :)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!
