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 wishesAngela 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.)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 ....)A side effect Chart for most of the Hormone/AI tablets ... on one page
I found this chart a while back, when researching Hormone Therapy/AI side effects - and thought this a good one with most of the oestrogen blocking meds on the one page, in groups, & showing 'most' of the side effects in an easy to read format. Please note - I wrote the 4 'boxes' of info along the top - with the alternative tablet names and explanations of the different groups of tablets. If you have MORE symptoms than listed here, feel free to add to the list in the comments below! (I can even add more dots if you like!) For Aromasin/Exemestane - I can add: Dry Eyes Extreme Hand and thumb pain Hand and thumb weakness - inability to hold/open things - I can't even tear open an envelope! Weight gain Occasional Back Pain (that I will be keeping an eye on!)WOOHOO!! CBD oil will be made available to the public OVER THE COUNTER in pharmacies ....
BREAKING NEWS Woohoo! This is a 'start' - CBD Oil is no longer being 'demonised'! ..... (tho I DO wonder how much they will charge) ..... I've been taking CBD Oil for a year or 2 now & I believe it has really helped my manage the side effects of my AIs. I only started taking it after I'd already swapped from Letrozole to Examestane to Arimidex ... and I am coping much better on Arimidex. They reckon that up to 40% of women STOP taking AIs due to the side effects .... so if there is an effective 'buffer' that makes taking it tolerable - it is worth a try, I reckon! https://www.tga.gov.au/media-release/over-counter-access-low-dose-cannabidiol?fbclid=IwAR0Qln7kCKCfNk5yJASBPEPShQwp9FY1pyfhth9x8V72IGL58sr9et6xSmQ Over-the-counter access to low dose cannabidiol 15 December 2020 Today the Therapeutic Goods Administration (TGA) announced a final decision to down-schedule certain low dose cannabidiol (CBD) preparations from Schedule 4 (Prescription Medicine) to Schedule 3 (Pharmacist Only Medicine). The decision will allow TGA approved low-dose CBD containing products, up to a maximum of 150 mg/day, for use in adults, to be supplied over-the-counter by a pharmacist, without a prescription. The decision limits over-the-counter supply to only those products that are approved by the TGA and included on the Australian Register of Therapeutic Goods (ARTG). The decision also outlines additional limits on dosage form and packaging requirements, including pack size and child resistant closures. There are currently no TGA approved products on the Australian Register of Therapeutic Goods (ARTG) that meet the Schedule 3 criteria. The decision was made following an earlier TGA safety review of low dose CBD which indicated that the known adverse events of CBD at low doses were not serious. The decision was made by a senior medical officer at the TGA acting as a Delegate of the Secretary of the Department of Health, following extensive public consultation. In the final decision, the Delegate has increased the maximum daily dose proposed in the interim decision from 60 mg/day to 150 mg/day. This increase follows further consideration of safety information, the public submissions on the interim decision and the advice of the Joint Committee of the Advisory Committees for Medicines Scheduling and Chemicals Scheduling at the November 2020 meeting. Sponsoring companies can now lodge an application to the TGA for inclusion of Schedule 3 CBD preparations on the ARTG. Applications are individually evaluated for safety, efficacy and quality. Further information on the application process and data requirements is available in the Australian Regulatory Guidelines for OTC Medicines (ARGOM). Medicines not included on the ARTG are known as 'unapproved' medicines. Importantly, unapproved medicines have not been evaluated by the TGA for quality, safety and effectiveness. Unapproved CBD medicines can continue to be accessed via the Special Access Scheme (SAS) or Authorised Prescriber (AP) scheme on prescription only. Any Australian registered medical practitioner can apply to the TGA for approval to access unapproved medicines through the SAS or AP scheme if they believe it is right for their patient. More information on this process is available on the TGA website at: Medicinal cannabis. The TGA can be contacted at info@tga.gov.au(link sends e-mail) or, for supplier and sponsor enquiries, at OTC.medicines@health.gov.au(link sends e-mail).Vertigo on Arimidex or other AIs? Who's suddenly 'got it'?
Has anyone on AIs experienced Vertigo? I'd always thought it a minor complaint ..... but yesterday it hit me big-time & I felt HORRIBLE! I've been on AIs for 2.5 years (letrozole 6 weeks, Exemestane 6 months, Anastrozole 2 years) & recently had a couple of episodes at night when getting up to go to the loo .... feeling dizzy & wobbly on my legs - but it passed. Yesterday morning, it started in earnest even before I got out of bed. Dizzy, Nauseous, disoriented & 'crabbing sideways' instead of walking straight ahead ... and just feeling 'really off'! The Dr has given me Stemetil for the nausea. There is a manoeuvre called the Epley Manoeuvre - has anyone tried it, to realign the crystals in the ear? It can make you may be quite nauseous (and even vomit) so have a tub handy ... Here’s a good one for explaining why we get it …… a bit technical but the culprits, (the ‘crystals’) are mentioned about the 4min 50sec mark. https://www.youtube.com/watch?v=kx4mQB0QzvQ My sister sent me this link: https://www.youtube.com/watch?v=lbPbM8018CE Or you can have a go at doing it 'to yourself' ..... but should have your first procedure with a professional, so you know what to expect. https://cdn2.hubspot.net/hubfs/6063852/Documents/vertigo-remedy-english.pdf Or this one to show how the moving the head moves the crystal https://youtu.be/9SLm76jQg3g?t=130
