AI side- effects
Hi all, recently commenced and AI, and wondering if side- effects reduce over time. I was feeling pretty good, but since starting have had trouble sleeping, felt a bit down and stressed out and tired, achy hips and ankles and on an emotional roller coaster again, keep putting on weight... any advice or tips. Bloody Breast cancer is the gift that keeps giving. I also feel like I can’t multitask or remember stuff, it’s 1.5 years after treatment, for me, I think I feel pretty good, then have a set back....
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
Hormone blockers
I’m seriously considering stopping my hormone blocker. I’m off it at the moment since Monday and won’t take this one again. I’m talking to oncologist tomorrow, and will discuss maybe a different one. I’ve been taking Anastrozole since May last year. The trouble is I have several preexisting conditions, all made worse by the drug, plus a few new ones. I can cope with pain, tinnitus, anxiety, hot flushes, etc, but my dysautonomia is becoming much worse, and my reflux was so bad I spent Monday in hospital with the doctors thinking I had a heart attack. I already have Barrett’s and risk oesophageal cancer if it is not controlled. I have done everything possible and am taking high strength drugs for it. I had to stop one because it increases prolactin so is contraindicated in hormone positive breast cancer. My dysautonomia has got so bad I can stand only a few seconds without blacking out. The drugs that help make the Barrett’s worse, so not taking them. The oncologist said the blockers give me a 2% extra survival rate over ten years. I’m taking Aerius in the hope it works as well in Qld as Europe to stop recurrence. I really feel by trying to stop the recurrence with blockers I’m highly risking oesophageal cancer, which has a 5% survival rate over five years. It’s not as though I will become well in ten years if I take the blockers. My conditions are mostly genetic. I also have mast cell activation disorder, which means I become anaphylactic to all sorts of things including some of the supplements people take. Does anyone know or is there anyone here who has stopped taking them and is doing well?
Anti hormone therapy, Anastrozole, sexual function
I am 66 and was diagnosed with early breast cancer, estrogen positive, in June and have had breast conservation surgery and completed 16 treatments of radiation last week. On Monday I have to see my medical oncologist who will give me the yeah or nay to anti hormone therapy on Anastrozole for five years. The treatments seem to be getting more problematic as I advance through them. The surgery in hindsight seems like a breeze. The literature on the side effects of Anastrozole are mind blowing; going through menopause (again), I am a lesbian so why I want a men-o-pause is beyond me (joke!), nausea, vomiting, elevated cholesterol, fluid retention, joint pains, dry vagina, bone loss, loss of sexual desire. I have read of women who have had negative changes in the way they view their bodies and sexual functioning and desire but I am having a different experience. After the operation I became aware for the first time in my life how much I appreciate my breasts and I want them to be a part of my identity. When I first grew breasts, I saw them as a restriction to playing cricket with the neighbourhood kids. I never saw their power and beauty before now. The other major change for me sexually is that the sex switch in my brain has been turned on again. I am single and am now contemplating and fantasising on sharing intimacy, loving and sex with another woman as a part of my future. A number of years ago I was going through a difficult patch and had shut down any thoughts of this to help cope getting through everyday life. I would love to hear your thoughts on any of the above. What has been your experience on Anastrozole and the side effects. Thanks for reading my story and I thank you in advance for your input. Many of the discussions and responses on this site have helped me enormously with questions I have had over the past few months.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 wishes
2 years - Ribociclib/Anastrolze
Hi Everyone, I just wanted to share some positivity and hope for any of you that are on the Ribociclib & Anastrolze combo.I have just completed 2 years and feeling pretty good. Hair is thinning at crown, the feet are disgustingly dry and the hands and nails are peeling BUT ... who cares, I can live with it... I’m well and enjoying life. I hope you are all doing ok and really wish you the very best of health for 2021 xxx
Does Anastrozole cause tinnitus?
.....WHAT'S THAT?? CAN YOU SPEAK UP?!?! About a week ago all of a sudden I became horribly aware of having tinnitus. I have had ringing in the ears occasionally in life, as you do. Never like this though. I feel like it's now suddenly 24/7 and it is shitting me literally to tears. Any evidence that this is a side effect of AIs or what? I know chemo can damage hearing...but how? Is that what's happening to me? I can't live with tinnitus. I've got too much other crap going on. UGHHHHHHH I don't see my oncologist for a couple of months, but I want to talk to her and say Hey! What is this!
