Help i feel like a robot
Been on exmestane and goserelin for 3 years and 4 years respectively. Is it normal to feel emotionless? I miss (?) the emotional highs and lows of having hormones. I do feel anger and frustration and at times stressed but joy, passion, deep love seem to have left me for apathy. Since I wasnt menopausal at diagnosis i have no reference pount to understand if this is normal for menopause or is it just the drugs? I kind of feel a bit jipped. Is this what the rest of my life looks like. Sorry to be dramatic but whats the point of it all?
Maybe try Starting AIs slowly 'over time' to see if the side effects aren't as savage?
I am now 71 and have been on AIs for 6 years, with varying side effects (specially on Letrozole when I first started.) I will completely stop taking them next year - but in the mean time, I am slowly 'weaning myself' off them just now .... (hehe, to be totally honest, I forget to take them most of the time! LOL) My theory is that if they started us off with one tablet a week for a month, then 2, then 3 (every other day), slowly getting up to 1 x daily - that the body should adjust to it better! I believe there could be merit in giving this a go. We really need to 'trial' this in a controlled way! MANY women stop taking them altogether (often without advising their Oncs) but then, if they get a recurrence, they'd have the 'What Ifs' and possibly never forgive themselves. It doesn't really matter WHICH AI you start off with - the body will still take a BIG HIT when you suddenly start taking them daily ..... (tho there ARE some lucky ladies who barely have ANY side effects ....) I was not one of them. I lasted 6 weeks on Letrozole, then lasted 6 months on Exemestane - and then went on to Anastrozole for the last 5 years which worked the best for me (with MUCH less aches & pains.) Yet others may START on Anastrozole & hate it as much as I hated Letrozole!! SO ....... IF you are having nasty side effects and it IS affecting your quality of life adversely - speak to your Onc about it. You DON'T have to put up with it, Have a break for a few months. Try a different one, like I did. It could make ALL THE DIFFERENCE. Also consider asking your Onc about Medicinal Cannabis Oil - I've been taking it for nearly 5 years now - and it HAS made a difference! There are many online Drs who will prescribe it, if your Onc won't. SO .... If you are about to start out on AIs any time soon - maybe mention 'starting them slowly' to your Onc ..... to see if your body tolerates them better, as in the long term, the longer you are on them, the better it is to reduce the chance of recurrence xx take care & best wishesA new clinical Trial in Australia - Ember-4 (Endocrine/AI alternative) - has anyone heard of it?
EMBER-4: A Randomized, Open-Label, Phase 3 Study of Adjuvant Imlunestrant vs Standard Adjuvant Endocrine Therapy in Patients who have previously Received 2 to 5 years of Adjuvant Endocrine Therapy for ER+, HER2- Early Breast Cancer with an Increased Risk of Recurrence (These links show other BC Trials that are currently 'open' in Australia - but only the WA page mentions Ember-4 ... ) https://www.breastcancertrials.org.au/research/open-clinical-trials/ https://bcrc-wa.com.au/open-clinical-trials/ https://trials.cancervic.org.au/search/ (Put Breast Cancer in the search area) https://www.australianclinicaltrials.gov.au/anzctr-search-results?search_text=breast%2Bcancer&condition_category=all&condition_code=all&recruitment_status=Recruitingðics_approval=Yes Not sure if this will help anyone - it is a different form of AI they are 'testing' ... I found this info on the Ember-4 trial on one of the Facebook BC sites ..... (BTW, this is NOT written by me and does not relate to me in any way .. ) (SERDs are an important endocrine therapy used to treat ER-positive breast cancer. Parenteral SERD Fulvestrant has been approved and used in the treatment of metastatic ER-positive breast cancer for the last 2 decades.) From a Facebook BC Post: Is anyone else on the Ember-4 trial? I found out yesterday that I was selected in the trial to get Ilumestrant (a new SERD that replaces your AI) so that is quite exciting, but I ended up with horrible diarrhoea yesterday after taking my first dose, so hopefully that is not a side-effect that continues… Ilumestrant is a Selective Estrogen Receptor Degrader (SERD) that you take instead of taking an oestrogen blocker or aromatase inhibitor… it degrades the estrogen receptor sites in the cancer cells rather than blocking your oestrogen, so it allows your body to have some oestrogen and hopefully less joint aches and pains etc… An interesting thing about it is that you must fast for one hour before you take it, and for two hours after you take it. This will not be an issue for me, but I imagine it could be hard in some situations.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/548032aMagnesium to help combat 'brain fog' on Tamoxifen/AIs? NZ trial suggests YES
Are you experiencing cognitive issues (even if you haven't had chemo but are on AIs - brain fog?) A trial in NZ is looking at using magnesium to mitigate those memory and concentration issues particularly for women on Tamoxifen. They suggest it should help with other AIs too. https://www.breastcancerfoundation.org.nz/news-articles/article/memory-and-concentration-problems-on-tamoxifen-sound-familiar-/57Adding Kisqali to hormonal therapy to early stage BC after surgery reduces recurrence risk.
People who took the targeted therapy Kisqali (chemical name: ribociclib) plus an aromatase inhibitor after surgery to remove hormone receptor-positive, HER2-negative, early-stage breast cancer had better invasive disease-free survival than people who took only an aromatase inhibitor, according to results from the NATALEE trial. There's recently been a study done on adding Kisqali to hormonal therapy after surgery reduces recurrence risk - up til now, it has also been used in combination with the hormonal therapy Faslodex (chemical name: fulvestrant) to treat advanced-stage, hormone receptor-positive, HER2-negative breast cancer that hasn’t been treated with hormonal therapy yet, or has grown while being treated with a different hormonal therapy, in post-menopausal women. It is reputed to have less nutrapenia than some types of chemo - but may induce diarrhoea The NATALEE trial included 5,101 women and men diagnosed with early-stage, hormone receptor-positive, HER2-negative breast cancer over 3 years. My initial thoughts are that 3 years isn't 'long enough' to really give accurate long term results on reducing recurrence - but any trial that helps reduce recurrence has to be better than no trials! Sometimes just combining a totally different drug to an existing regime can help big time. Some years ago, they added Itraconazole (an anti fungal treatment for nails) to Prostate Cancer treatment & it (and other anti fungal treatments) is reducing tumour growth and side effects in Prostate Cancer patients .... so thinking outside the box, helps! There is a podcast to listen to here, as well as more information on the treatment in the link below - it could be something to raise with your Onc, if or when it becomes available on PBS for patients in Australia ...... https://www.breastcancer.org/research-news/kisqali-reduces-recurrence-risk?Management 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.20.00113An interesting paper on AIs - Precautions for Patients Taking Aromatase Inhibitors
Published online 12 months ago .... well worth a read. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7848814/?fbclid=IwAR04ZJ9xKopWQUYtDosUz5Xl3Q0ynCsYMKOkkOI5tWgyj9LM7Bldx4i0Eg0 Below, a list of medications to be avoided on AIs (Letrozole & Exemestane mainly).... (also in the doc above, but here as a separate document.)I thought I'd gotten over the hand/wrist pain!
Damn!! I can't believe it! My right hand & wrist suddenly went back to massive ache & pain late last night (just like when I was initially on Letrozole just under 4 years ago ...) along with trigger finger on my ring finger & middle finger - has come back again too! grrr I can't believe it - it has been fine for the last 2 years! I really thought I was 'over' that bit!! grrr Back then, it was excruciating - as it is now. Just the one hand/wrist .... so far! It is very 'stiff' and difficult to form a fist and has absolutely no strength and just continual ache/pain. It started about 11.30pm last night, so I took some Panadol osteo and rubbed Voltaren gel on it & wrapped it in a bandage to support the wrist - which at least helped me get some sleep ... but it is very painful again this morning. :( Medicinal cannabis oil over 2 years helped the last time ..... and occasional prednisone ... might be time to break that out again! NOT HAPPY, JAN! :(FOXA1 gene shows resistance to AIs .... genomic mutation
In September 3, 2020 a study published by Memorial Sloan Kettering Cancer Center indicates how genomic mutations in FOXA1 can cause cancer drug resistance to AIs. FOXA1 might be one to be added for Genomic testing here in Aus - no point being on AIs if the gene is resistant to it! https://www.mskcc.org/news/mutations-same-gene-create-different-paths-breast-cancer-drug-resistance?fbclid=IwAR0jIFetNV-6ulvLhDYnQNViwN3hoYsSdmgFQxt1MzTxaknVSHGlD_n7O_c Technically your tumour samples should be kept for some years - so they SHOULD be able to be sent for testing/Oncotyping ..... (my husband's first tumours from 2010 had genome sequencing done earlier this year, as well as those from the biopsies taken in Jan - to see if they were the same cancer & whether more modern treatments were available ....)