Arimidex - first 6 months
I was terrified of this drug and the side effects and I even posted on here looking for support and info back in Jan. (The tone police intervened and I have stayed away from this site since because I was too scared to come back. Despite this, I am checking in one last time before I delete my account, in case it is of benefit to anyone newly diagnosed (like I was at the time, truly traumatised and then told I will be starting anastrazole). I want to share that my news is positive in relation to anastrazole. I don’t have any joint or muscle issues, pain, soreness, stiffness, whatsoever (which were my biggest fears). I have a few hot flushes in the evening and a bit of insomnia. I think my hair and skin is more dry and I need to use more leave in hair treatment now. My weight gain is entirely explained by what I have been eating during lockdown and not so much the drug! From the long list of worrying side effects you will doubtless end up reading, I have experienced enone that are ruinous. (I know I will have to monitor bone density.) Maybe things will change over time but I do remember I felt desperate to know or get some reassurance from someone about what the first few months would be like on an AI and was there an actual chance I would not get the worst effects? I hope this account may help someone facing anastrazole for the first time and knowing that it can be okay. Yes I could do without the hot flushes and longer term risk to my bones, but it’s not as bad as I imagined in my head, terrified and newly diagnosed, with little info to go on, or not the info I perceived as useful to me while having a very cold and underwhelming oncologist. I hope others will get the info that they need, here or elsewhere, and feel confident to speak the truth and advocate for what they need.
High intensity excercise for joint pain
Has anyone had any experience with high intensity excercise to combat joint pain from arimidex? Having been on the tablets for 9 months I am quite sore. I take panadol osteo which helps but some days I just feel like I have run out of steam and don't want to fight the pains. A quiet day snd lots of walking helps. My surgeon told me about the Exmed group. They specialize in workouts for cancer patients. I have never been to a gym. Has anyone had any experience with this?
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
Some people say the strangest things!
I'm dealing with some tendonitis from Arimidex. I am wearing kinesiology tape on both my wrist and my leg. Ridiculously when I go to my physio they only seem to have the tape in bright colours - currently hot pink camo on my wrist and black cow spots on my leg. At least it doesn't have flashing lights!! So I'm walking (actually limping) up the street yesterday and a man about 30 years old (so not a little kid who simply doesn't know any better) yells out about the tape and how weird it looks. I already felt a bit self conscious but everyone within 50 metres turned and stared at us. I told myself that they were looking at him because he was the one yelling out but I just wanted to disappear. I haven't felt this way since I had no hair or eyebrows or eyelashes. Pretty sure he must be on the Autism spectrum (if not he's just a total idiot) and I keep telling myself he is definitely living with more problems than me. But what I hate is that this bloody fluorescent tape has made my issues SO OBVIOUS!! Everyone I meet asks me about it and I think I need to invent some incredible absailing misadventure, snow skiing accident, or something exotic to explain it because it always comes back to my BC. Next physio visit I'm taking my own BEIGE tape and demanding that they use that. I'm so over being the girl with BC - I just want to get on with my life.Having a 4 week break from Exemestane/Aromasin ...... who else has done that?
I saw my Onc yesterday, who has suggested that I have 4 weeks off Exemestane from yesterday - to see if the hand aches (in particular) 'lessen' and to see how much of the pain may be attributed to arthritis (which I know I have - but was never at this level of pain) or a direct result of the AI. I know a lot have had a break from Letrozole ..... who's had a break from Exemestane/Aromasin? Up til a couple of months ago - I was happy to go onto ANYTHING ELSE to give a go - to lessen the side effects ..... but in recent weeks, most of my other side effects (particularly the hot flushes) have abated, so the remaining problem was really the hand pain and some hip/knee (which I had to a small degree before being diagnosed with BC.) It will be interesting to see how quickly the pain lessens & by how much. Currently, it wakes me up often during the night - and I have it all day. In the morning, my left hand fingers in particular just won't 'bend' until 1hr+ after getting up - and also trigger finger in my thumb & middle fingers. I currently can't use my thumbs to pull up trousers or disengage the hand brake in the car ..... and a myriad of other day to day things - but if I had to go onto another AI or Tamoxifen - and the 'pay off' would be to go back to hot flushes & other nasties ..... I am not keen to do that. I'd rather stick with the hand pain, even tho it frustrates me with both my favourite past times (Uke Playing & kayak fishing!) Depending on the outcome of the 4 weeks off AIs, I may then stay on Exemestane, or may go to Anastrozole/Arimidex (the one with the least number of side effects - but sadly still includes insomnia!) Anastrozole/Arimidex doesn't appear to affect the joints so much. If you are on it - how is it affecting you? She will ring me in 4 weeks to see how I am going & then decide which one to go with. She was not keen for me to go onto Tamoxifen (only as a last resort) as she said there is a slight chance of cervical cancer and other issues that she was not happy with. I had a bunch of other questions to ask, but bloody forgot (even tho I had them written down!) DUH!
