Early Days on Letrozole
So, I started taking Letrozole on the 1/6/18. My oncologist says I have to be on it for 10 years as several ongoing studies are indicating cancer preventing benefits beyond the seven year mark. It's a watching brief though, so I'm prepared that the advice might change in this time. Three days after starting it my ankles started to ache. A lot. It got worse and started to wake me up at night. Whether I exercised or not didn't make any difference. I took some osteo-panadol for when it was really painful but I didn't fancy living on that, so on the advice of many people here, and my oncologist, I started taking krill oil. Within a few days the pain was down to a manageable level. Hooray! Three weeks later though the ache ramped up. At exactly the same time my hot flushes, which had subsided to a bearable level after chemo, suddenly got a lot worse. Longer, stronger and now with extra bonus sweat! I persisted with the krill oil for another week but there was no change. So in my personal clinical trial, I came off the krill oil for a (painful) week, and then started magnesium. Again on the anecdotal evidence from the good folk here, many of whom say it helps. I also had a foot, ankle and lower leg massage at one of those mall massage joints on the same day as I started magnesium. It was utter bliss having my aching ankles worked on! Something changed, because again the ankle pain subsided to a bearable level. Now whether this was something to do with the massage, or the magnesium, a combination of both, or my body simply adjusting to the rapid withdrawal of oestrogen, I simply don't know. My oncologist says no evidence that magnesium works on anything other than cramps. However I'll keep taking it for a couole more weeks and then stop. I'll observe what happens and then, if the pain returns, I'll move on to the next thing in my 'clinical trial', which is curcumin. The onc says her patients have reported success with that. There'll be a magnesium spray test at some point as well! My ankles still ache but it's at a lower level at the moment. All our bodies are different, der, but I thought I'd share my experiments in managing Letrozole side effects. It might be useful to someone! K xox
Taking Letrozole
Hi ladies I need advice.. I have been taking Letrozole since June 18, I was told my menopause symptoms were going to come back with a vengeance.. But having to take this drug as many of us do I thought I can handle it. 4 weeks after taking it I was ok not really any hot flushes to speak of, no night sweats.. Then BOOM omg, as soon as it gets dark it seems, they start, not to bad in the day time.. but more and more the night sweats are getting worse.. also Not sleeping more than 4 hours a night is not helping, i am getting forgetful, and generally pissed off. what can I do? I have made myself a peppermint spritzer bottle that I keep squirting in my face lol, I have made a roller bottle of Sage, lavender, and peppermint to roll on my pressure points, I am at the stage where I just want to stop taking this stuff. I am seeing my GP on Tuesday so I will talk with him, and I still haven't started my Radiation, that starts on the 14th... I don't want to be like this for the next 5 years, I know I very lucky and there are so many out there that are so much worse.. but yeah...... I guess its really getting me down
Tamoxifen version 4 and a fantastic week
Like a bad movie that should never have had a sequel let alone 3, here goes round 4. i've had another little Tamoxiholiday after getting into quite a serious funk a couple of weeks ago. This time I have ditched everything, the drugs, the drugs to counteract the side effects of the drugs, all the vitamins and supplements as well. I didn't really think they were doing anything anyway after 10 months of taking them. Each time I go off it, the side effects give a little and take a bit longer to kick back in. This time after two weeks, they ALL GAVE UP. I have had the best week ever since D Day. That's right, no hot flushes for a week. No foggy brain. A week of no aches and pains, no creaking clicking joints, no funky mood swings, no hot doona dance (and that was not in a good way either) :smile: Sleep, glorious, unbroken sleep and, even a bit of mojo coming back. :wink: I went for a decent trail ride up through the mountains on my horse and was not crippled the next day. The only thing that didn't return quite as well as it has been previously is my short term memory, which is somewhat disturbing but it's not terribly bad. I've been on a bit of a high actually. So, so good to feel normal again. Kind of like a good drug you want more of :blush: So I am really dragging my feet on popping that pill again. The best thing is that I have been able to do some serious, clear headed thinking and soul searching. I have decided this will be the last time. If I can't get it under control there won't be a version 5. I am content with this decision and am not prepared to spend 10 yrs feeling like a moody, teary, achy, no mojo, foggy space cadet for an extra 6% maybe. If it comes back will I blame myself? I have heard and read of too many recurrences even after doing all the right things for years so I don't think so. I would never have known either way. Quite frankly given the amount of spread that was already there I think I'm going to be pretty lucky if it doesn't reappear even with the drugs. Let's hope the chemo did it's job. That's not meant to sound negative of morbid just realistic. My onc has handed the reins over to me and I am to call him if I want to try any of the other drugs. Apart from that "see you in 6 months". I think he's given up LOL Anyhoo all that being said I really do want to do everything that has been recommended. I am hoping going into it feeling this good in mind and body, and armed with some tips and ammo from my new found friend in the UK , it will get sorted. I am off to have a glass of wine. (ok, it's the third one) So cheers to giving version 4 an absolute red hot crack and slapping this bitch into submission. Thanks you for listening once again lovelies. xoxoxoxo Theme song for the day................White Snake.................Here I go again.Post Chemo Life
This is my first week clear of the three week chemo cycle. I am officially finished. Next up for me is a bi-lateral mastectomy and reconstruction in three weeks Everyday this week I have felt my anxiety increasing. I can't identify any specific reason. It's really interfering in my day to day life, sucking out the enjoyment of activities that have previously been pleasurable. It's colouring every waking minute. I don't sleep well at all. It's over four months since I had a decent night's sleep. I'm almost looking forward to the 8 - 10 hours on the operating table because I'll be 'asleep' for more than 3 - 4 hours straight. My eyes have been twitching for weeks and weeks. I've just noticed tonight that three more fingernails have started to discolour. My nails and fingertips are so sore, doing basic household chores hurt. I have to wear gloves to do a lot of them. Folding laundry is like rubbing my hands on sandpaper. Some of my fingertips are starting to feel a bit numb. Several of my toes are turning dark brown and are sore as well. The chemo induced menopause is awful. My skin is terribly dry. Over the last few days my knees have started to ache when I move them after I've been still for a while. Is that menopause? Could the anxiety be menopause related? The f*****g hot flushes are making me miserable. Mostly I have them for 12 hours a day, from about 8pm to 8am, but today, all day as well. It's bloody distressing. And I hate the freezing chills that often follow. I am never a comfortable temperature anymore. I used to love going to bed. Now I enter my bedroom and look at my bed like it's a battlefield. And now that chemo is over, I've had to return to 'normal duties' and find my brain is comprehensively unable to process the multi-tentacled beast that is my seven person two dog household. I am making mistakes. This is basically a big whinge, sorry. I suppose I just have to pull up my big girl undies to the armpits and get on with it. I've treated my BC to give me the best chance of a long life, and these side effects are the price I have to pay. My oncologist is sympathetic but disinterested. Do I work with my GP to try to manage these issues? I am seeing a counsellor for the emotion stuff, I hope that starts helping soon. I'm interested to hear how other's immediate post chemo weeks were. Reassurance I suppose!
Strange happenings lol
Ok so i havent even started treatment so this is not a side effect of same but has inky started post mastectomy and axillary dissection. I dont get it and am hoping there is an explanation. I get so hot tha t the sweat us dripping from my face and nevk. The back of my hair underneath is always saturated and yet its 22 degrees inside ???? What on earth is causing this? I had my mastectomy and axillary dissection 12 days agi. Chest is no drama. Blissfully numb, as is underarm. Yet i hace horrific burning and hypersensitive pain on the underside of upper arm. I end up having to take that side out of clothing gently brushing in bed and make sure nithing is touching as i swear a feather feels like its being rubbed with sand paper omg and no matter how much sleep i have am still tired and unmotivated. Crap i whinge a lot but i love having this place to learn share and vent.
Active treatment over and back to work
Hi everyone, I haven't posted for a while but I've been a regular reader and commentator. I really feel this is such a long treatment phase and trying to find my new normal. I had my mastectomy back in May, followed by chemo and rads. My skin has healed from the radiotherapy, been exercising daily and started running again, so physically I feel ok. Experiencing horrendous hot flushes and about to start tamoxifen next week. I'm getting quite nervous about the side effects. Some nights I don't sleep that well now. I feel like it's just like chemo as that you're warned of all the side effects but don't know how it will effect you until you take it yourself. Daily pill. Do I take it in the morning or evening? What is anyone's experience? Work is on my radar for finding the new normal. I took leave from my teaching position and feel very fortunate that I have a supportive group of friends and colleagues. I'm due back at work next week (pupil free days to plan next year). Unsure about comments from some, and also unsure about my concentration levels. My hair's growing slowly... Teaching will officially start in the new year with my class. I think I've just babbled for a bit there. I also want to show my own teenage kids that 'mum is ok now', by going back to work as normal. Don't know why I'm still scared and have quiet teary jtimes. Due to see my surgeon later this week (last Dr appointment for the year!! Woohoo.) Wishing you all a fabulous festive season, Karen xx
exemestane
Ive just started to take the drug exemestane instead of tamoxifin.This is a clinical trial that im doing. was hoping some of you may be on this same drug. just wanting to know if you are having many side affects and if they settle down. My hot flushes have increased and im having joint and bone pain,cant sleep(which is nothing new),and very lethargic tho this could be as ive just finished radiation. Hope to hear from someone on this same drug..........cheers annie xx
