Oncologist visit
Hi everyone, well today was my visit to oncologist for two months, I'm taking kisqali and letrozole and my results were great and she told me everything was stable I'm so pleased everything is doing what's it's suppose to be doing. Enjoy your day everyone I know I will be now šš
Letrozole - Is there a light in the darkness?
I'm very, very cautiously expressing hope that things may get better on Letrozole. Some of you may know that I have been one of the unlucky ones to have very severe side effects from the AI. Joint pain, soft tissue pain and injuries have been hugely debilitating for almost the entire time I have been on it (ticked over 2 years at the beginning of August). Well, I hesitantly say this... I got home from work on Thursday, got out of the car and thought, "that's weird - almost no pain". Now this is the time of day that I am usually struggling really badly and hobbling into the house as quickly (joke) as I can to medicate. No need to hurry. I am still feeling that way. And it can't be due to warm weather because it has been freezing here. I am not abandoning the medication that has taken the edge off the pain enough to make it manageable, but I am hoping that I have turned a corner. I have to admit that I'm also in slight state of disbelief and a bit suspicious that things could change so radically. My oncologist said a couple of appointments ago that often after about 12-18 months pain settles down but I think we were both disappointed and resigned that this wasn't happening for me. Given I am on this for at least 8 more years that's no minor obstacle. I realise that it might get bad again but I can now hope that it will also get better and maybe this will also give others hope for the same.An 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.)
Back on the bandwagon
Well today is my last day of freedom from letrozole as i go back on it from tomorrow after my 2 month holiday. For those who are contemplating a break from whichever drug and feel comfortable doing it (i am in the low risk category) i recommend it. Don't expect miracles after one week off cos they won't happen that quick. Depending on the level of discomfort you are feeling will depend on how long the effects take to ease. For me after a week my hip joints eased but my hands took a month (hence why i wanted 2 months off). My hands will always be an issue due to arthritis setting in (hereditary) but i can manage that through trial and error. Also pick the worst time of year, aches and pains wise, to take a break. For me it's winter though summer can be almost as bad if it's a hot one. Keep a diary to track when which part of your body eased and also to track your moods funnily enough. I'm not a moody hormonal type but the last two weeks have been awful to the point of depression. I just about snapped my husband's head off over something so tiny but then he snapped back which was unusual for him but when we had a chance to talk it through i found out he'd been worrying about his ED and nothing seemed to be working the way he wanted it to. Add my funny mood to the mix and hey presto...two very snappy, crabby people. That at least has all settled down and as he said i was probably worried about going back on the drug. My onco did give me the option to try tamoxifen but after she said the main side effect was flushes i said no thanks. Most of mine when i did have them came at night which wrecked my sleep. So back to the devil i know. And yes i am allowed to have a 2 month break each year, thank goodness... So, if you're contemplating a break it's well worth it. Being able to stretch, bend, squat and not feel like an 80 yo granny has been marvellous and shows that for me there is light at the end of the letrozole tunnel. 3 years 3 months to go...
New member
Hi. I was diagnosed with mbc in 2021. An MRI done of my hip (me thinking I needed a hip replacement) revealed a bone lesion and further scans showed I had lesions in my skull, breast bone and right shoulder blade. Radiation helped with the pain in my hip and I am now able to walk unaided. I have been on letrozole and Verzenio (abemaciclib) since mid 2021 and so far results have been positive. Lesions have either shrunk or stabilised and there is no sign of cancer in organs. I know that one day treatment may cease to work but in the meantime I remain positive and enjoy every single day. I love to travel, cook and spend time with family and friends. Iām forever grateful for Bcna, my medical team and all the research that goes in to treatments for this disease. I know others are not as lucky as me and I wish everyone well on their individual journeys.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
Hormone therapy, it will be ok. :)
I have done 2 years of Tamoxifen and I lasted 3 months of Letrozole. In all that time I have been unable to work and have been too lethargic to do much at all. Yes I was one of the few who had pretty bad side effects and it was really getting me down. I was thinking is this my whole life now? This aching body, is it permanent? Well I have gone off the Letrozole for three weeks. Only a couple of days in to it but I have energy! The aches are gone! I feel fan-flaming-tastic! I am gonna be ok. <3
Letrozole - aches and pains continue
Last year I was switched from Tamoxifen to Letrozole. At first I was feeling okay on the Letrozole but then I had a post menopausal heavy bleed (thats a whole other story), so had a medication holiday. When I resumed the Letrozole I started to ache and have body pains constantly, usually at night which resulted in ongoing fatigue. I saw my doctor who advised to stop taking the Letrozole - I was 4 years post breast cancer at this stage, so it was felt, as my initial prognosis was good, this would be okay. My issue is now, 6 weeks after ceasing the Letrozole, I still get the body aches and pains. It seems to be getting slightly worse. Does anyone have any experience of ceasing the meds and how long does it take to start feeling pain free?
How to prioritise self care?
So self care is the mantra in survivorship right? I need to do gym three times a week for the weight bearing exercises to stave off the bone damage of Letrozole. Haven't managed to work that into my schedule since early last December. On the days when I'm not at the gym I have to walk because minimum of 30 mins a day exercise, preferably an hour. I have to bust stress, of which I have an excess. So I'm starting a yoga class on Saturday morning. Can't use food and booze to stress bust anymore. I have to sort out my head, get rid of the depression, manage the anxiety, so it's a psychologist appointment every two or three weeks. She wants me to journal. I struggle to find the time. She also wants me to spend 30 minutes a day doing something I enjoy, just for me. I saw my dietician today about my failure to knuckle down and lose weight. My willpower is rubbish and as you know, it's like rolling a boulder up a hill trying to lose weight in menopause on an AI. Have to eat a low sat fat diet because of the Letrozole cholesterol issues. I have to cook most days of the week for a vegetarian, three meat-eating teenagers and a Type 2 diabetes octogenarian. There's also the assorted ongoing medical appointments that seem to roll around with remarkable frequency. This afternoon on my way home from the dietician in Town, I received a phone call from my son saying my daughter was vomiting, a lot. She was already home with extreme tiredness and what she described as stress from the overwhelming amount of schoolwork she has (Yr 10). Of course it could be just that, or glandular fever, but my mind goes straight to cancer. Lymphoma probably... I also get an email from school about my nephew (Yr 8) He's got yet another detention after being given several warnings to rein in his classroom behaviour. The teacher is "beginning to wonder if he has impulse control issues". My son, starting uni next week, has done nothing whatsoever about learning to drive or getting a job and has zero money. How does he think he is going to pay for his day to day uni life? He's been sitting in his room playing computer games and watching anime since November. From the beginning of January I've made him cook dinner once a week. My niece continues to be the most difficult of them all. Almost continually rude, refuses simple requests, sulky, terrible sleep issues & much more. So to properly deal with each one of those issues takes buckets of time and buckets of money. GP appointments, specialist child psychologists and who knows what else. About to take vomiting daughter to the doctor now. My self care, if done properly, would take buckets of time and buckets of money. There are no buckets here. If there's a choice I have to prioritise the kids. Any prioritising of myself is already accompanied by massive guilt. I am really struggling to arrange my survivorship life. And that's even before I start trying to find and then hopefully get a job. How does everyone do this? How do I recover fully and lead a healthier, engaged life in survivorship, and take care of everyone else, have a satisfying relationship with my partner, a job, maintain contact with my friends, keep fit, lose weight, not be stressed and feel OKish about everything? Is it actually possible to do at all? Yours from the House of Bad Behaviour and Vomit, K
