Hi Angabb54, very interested to read your post about your discussion with your Consultant. Can I ask you were they referring to soy and seeds, or actual plants? Just a bit confused if it was plants/vegetables as I’m always being told I can’t eat too many vegetables! I do avoid soy for this reason but eat lots of veg. Also very interesting what said about organic! Thank you for posting Kxx
Thanks for your reply. Is this the same as normal acupuncture? I’ve just been offered acupuncture but told it will be a weekly or fortnightly course.
An update regarding my visit to the Breast Cancer consultant yesterday..I was on hormone therapy for two and half years
Ive not taken Letrazole since Sept 14th having suffered awful side effects, which became worse on the Cipra brand.
I was told yesterday by a Consultant she had no problem with me coming off Letrazole as my tumour was so tiny and contained in the breast they removed even though it tested positive for oestrogen dependent ( aggressive type of tumour)... My risks were carefully looked at and explained and although once having had this you are more at risk than the average woman, the risk was still very low..This begged the question why it was recommended in the first place and she indicated that it’s a belt and braces approach which is sometimes suggested. She did say that had she seen me at diagnosis she wouldn’t have put me on it as the risks were so low.
Anyway we also discussed diet and plant oestrogen..or phytoestrogens..I was confused at to whether these are safe for women who have had oestrogen dependent positive tumours. I was surprised to be told that these mimic our own body oestrogen....and therefore to be aware and not to maybe eat these foods excessively. Also importantly she recommended ORGANIC food, especially with, meat or dairy. The other factor is EXERCISE very important and to do something that raises the heart rate as well as other non aerobic exercises.
So, I shall get my once a year mammogram every January together with the physical check up..up the exercise Yoga is not enough!
She said to remain vigilant and any concerns to speak to them at any time.
I am still feeling headachey, sore and tired but the joint pains are no way as bad and I can get out of bed in the morning. I don’t feel 90 years old any more but I do feel battered and bruised by this entire experience!
Hi, yes I was the same as you re sweats at night. They settled but in the meantime had acupuncture in the ears, I think it helped. There was a lot of ladies in the same situation, after the course of about 8 sessions they would go periodically for top up sessions. I just did the 8 week course. I think it was called Nada.
All the best.
I started Letrozole 2 months ago and am being woken several times a night with night sweats, I throw off duvet then wake feeling cold, and pull it back over me and then wake up so hot and sweaty. Also have hot flushes several times a day. I’m taking the accord brand.
Has anyone found reflexology helpful or acupuncture?
i am finding that I get mottled skin and have a small reddened area on my (good) breast. I have been on Letrozole for just over the year and am getting appalling side effects. I’ve been referred back to the Breast Clinic tomorrow to get it checked but having had a recurrence on my bad side last year I am very worried.
Has anyone else experienced skin problems?
i am finding that I get mottled skin and have a small reddened area on my (good) breast. I have been on Letrozole for just over the year and am getting appalling side effects. I’v Been referred back to the Breast Clinic tomorrow to get it checked but having had a recurrence on my bad side last year I am very worried.
Has anyone else experienced skin problems?
ive been off letrozole for a couple of weeks now. sill feeling extremily tired and having memory problems going to go to see my GP next week to discuss. sometime having real bad swets in the night xx
One of my happier discoveries is that dark chocolate is a good source of magnesium. I believe that most minerals and vitamins are better absorbed via food than as chemical supplements.
Hi, I am also the same age ish as you . I have taken Letrozole for over 2 years now. For the first couple of months I had heavy night sweats, absolutely drenching and also woke up very sluggish and with a headache.
I put a lot of that down to being dehydrated because of the sweats. After a couple of cups of tea and breakfast the headache went quite quickly.
These days I am still slow to get going in the mornings, it doesn’t matter much as I am retired but I feel for those ladies who work or have families to see to.
The joint pains in the early days were quite bad, throbbing ankles I remember.
I still have joint stiffness which obviously hurts but once I get going it helps although several times a week I resort to paracetamol or ibroprufen.
I don’t feel I could stop the Letrozole as I want to give it my best shot but we are all different aren’t we?
Please read the threads about the different manufacturers of Letrozole. I believe a lot of ladies struggle with Cipla , that’s what I started with, I changed to Actavis and now am sticking with Accord.
Its a big learning curve!
All the best
Hope you are feeling ok after your mastectomy, I am same age and was put on Letrazole 2and a half years ago after my mastectomy.
I have stopped Letrazole until I see a Consultant next week as I have had some bad side effects mentioned in previous threads.
I would say that’s exactly how it feels, unable to wake and get up normally, sluggish, headaches, tired, painful joints etc. I felt exactly the same. It’s a weird feeling, not feeling yourself and as I described it feeling a bit ‘drugged’and heavy.
Advise you to keep tabs on the brand they are giving you, as I thought I was ok and got on with dealing with the SE as we women tend to do, I did suffer side effects, but it did get a lot worse after I was given Cipla brand....
Good luck xx
Hi - I am new to this. I had a mastectomy in August and have been on Letrozole for about a month. I do get aches in my joints but the worst for me is being unable to wake up in the mornings. Then feeling so headachy and sluggish. Is this normal? I am 63 so past menopause. Any advice welcome.
i was on letrozole for 6 months. Started mid .feb. Taken off 6 weeks ago because of SA, the worst being the way it messed with my head. Severe depression anxiety and multiple panic attacks. Have now been put on exemestane. Took my first one today and keeping my fingers crossed that they suit me better. They are not the generic kind and looking up the price via GP prescribing was gob smacked to find they cost £88 per month. If they’re no good at that price nothing will be. Here’s hoping!! Xxx
Hi again, I agree about animal oestrogen! Although I have never been much of a meat eater I gave it and dairy up when I got my diagnosis, apart from a little goats milk in my one or two cups of tea a day and an occasional roast lamb dinner, and I can't remember the last time I had one of those! Do think cow is the worst culprit from what I've read. Funny though, I have made many changes but giving up my cuppa was a step too far! Please let me know what you think when you've looked into it, be very interested to know xx
Hi Kate..I will definitely check that out..am thinking that animal oestrogen should be limited and that will include dairy I imagine. I will look into into it..seeing consultant on 23rd this month. It's been a month since I stopped taking Letrazole. My husband has even said my driving is better ! Xx
Hi Angabb54, please double check this but I looked into oestrogen and diet and believe plant oestrogens behave differently and are okay....as I said please don't just take my word for it but that is how I understood it x
Hi girls..it's good to know that there are alternatives to taking Letrazole...I'm off it 3 weeks this Sunday and my side effects are definitely subsiding. I too had poor memory and concentration issues, but the worse thing was the awful fatigue and pain in joints..I felt as if I was dragging myself through life and everything was such an effort. Horrible...keep chins up. Xx
Hi angabb54 I only stopped taking letrozole on Friday and already feeling much better Im not as tired and my mood has improved ,I will have to make an appointment for a review of my medication in 5 wks . I would love it if they said my risk was s low they didnt think it was necessary to take it x
Hi Rosarty dont know if you still come on here. I have just came back on the forum after having a break. I have now been on Letrozole about 8 months. I have been feeling very tired and falling asleep a lot and my mood has been very flat. also sometimes get night sweats and Im still having memory problems ..and find it hard to think straight sometimes which makes managing my job very difficult. I have recently been advised to come off the Letrozole to to see if my symptoms improve, I have only been off them since Friday and Im feeling better already. They have told me toring back up after I have been off them for 5 weeks and if Im feeeling better they will arrange an appointment for me to discuss a change of medication xx
Hi Angabb, I think there are three main hormone therapy or aomatse inhibitors for post menopausal women being Anastrozole, exemestane and letrazole. The minute I mentioned the side effects to the Oncologist he told me that there were plenty of other options and gave me the exemestane instead. So far the pain has eased and although not gone completely I am able to move about more freely. Cross fingers.
Although I posted in the thread that I've suffered no real side-effects from taking Letrozole (apart from gaining a few pounds-lost 11 during chemo!) I've just read on the US BC site that it can cause heart problems. I'm aware that it can raise cholesterol and since the article didn't elaborate on the causes of the heart problems, am wondering if this is why? Has anyone else info' experience of this? Not too happy if this is the case, as heart before this deemed very good ie when I had the US pre-chemo.
Hi Pip, Haha excellent that did make me smile!...interesting re magnesium as well as adcal. I've been taking Adcal AND magnesium citrate though not at the same time. I can't say it's helped me much so far, but maybe I'll try two tablets rather than one...they are rather large and can get a bit stuck! I now crush mine and add natural yogurt it's so much easier! It's just amazing how much you are not told isn't it..and no one seems to know much about food..(I think I'll qualify too and become a nutritional adviser! ) But I suppose that's the beauty of the Internet! Also feeling a bit cheesed off having checked out foods containing oestrogen in the hope I could perhaps cut out a few instead of taking Letrazole...guess what it's everything I love and have been happily chomping away on for years..all heathy foods too, chick peas, beans, lentils, carrots and.....yes you guessed PRUNES!....Grrrrrrrrr. Almost toooo much information on line I find. Enjoy the rest of your day.
Hello Pip, yes we sound similar re diagnosis etc re bone density I am at risk as mother has Osteo in her back. I've been advised to take a bone building pill which having tried in the past also left me feeling wretched with joint pains...reviewing that at the moment. Last night on TV there seems to be new evidence that PRunes are efficacious for bone building! I'm also taking Adcal twice a day.. Guess what I had for breakfast...xx
Hi Angi - I think our situation is very similar - I am 63 and post menopausal so Tamoxifen was not suggested. I also haven't heard of Alison's Exemestane but, in my understanding of the information on the eMC website, https://www.medicines.org.uk/emc/medicine/25862 Exemestane is usually given after 2-3 years of Tamoxifen so that's probably why it wouldn't have been offered to you or me. Do hope that the new tablet sorts out your aches and pains, Alison and that you are soon feeling an improvement - might be worth getting your vitamin D levels checked too. Best wishes Pip
Hi Alison, really interesting isn't it..such a small pill with so many horrid is effects..yes getting out of bed really uncomfortable, the stiffness and joint pain have been awful...my side effects already diminishing it's been two weeks since I took it. Await to see what the consultant says...not heard of that one. At my nurses visit she said I could try tamoxifen but I know that is for pre menopausal women and I am 62 and post...so unsure why it was even suggested!..good luck on new pill and let me know how you get on..xxAngi
Hi Angabb, I have been on Letrazole for 9 months but the side effects over the last two months have been awful, with chronic back pain being the main problem. I have been unable to turn in bed and getting up was also a nightmare. I spoke to my consultant who believed that it was the letrazole but did send me for a Bone Density scan also. He said that there are plenty of other things instead of Letrazole and I am now taking Exemestane. I have only just started talking this so will let you know if the side effects subdue. Alison x
Hi Angi - Yes, researching diet and phytoestrogens is my way forward too. Luckily my local Tesco has recently turned 2 aisles over to 'free from' produce and the range of vegan cheeses and puds is amazing. Have you read 'Your Life in your Hands' by Jane Plant? She supported the medical team fighting her aggressive cancer by completely changing her lifestyle & diet - and lived a further 27 years to prove her point! You can buy a cheap second hand copy on-line from AbeBooks. It's worth a look. Your mastectomy surgery will have undoubtedly battered you about - I was offered wide local excision but, in the few days before the deed was done, I asked for an additional meeting with the surgeon to request that, if possible, I kept my nipple because she had been intending to remove that. She said that decision would be made as she did the op. I woke up to discover that she had managed it; it now points in a very quirky direction but has lots of character! You will have gone through much more than I did so be kind to yourself and enjoy not taking the tablets. I'm sure you will soon be feeling so much better and would love to hear all your positive news in the future. All good wishes Pip
Hi and thank you for your response..it's good to hear that you are feeling better and able to leap out of bed..I've forgotten what that feels like!..great advice I shall go along with all the questions and also check out my predict figures...sounds like your diagnosis was quite similar to mine..very small tumour and no nodes involved..did you have a mastectomy too?..I've been off Letrazole now for just two weeks and still got joint pains and having trouble getting off to sleep..but I do feel less drugged and more alive I have to say!
My next task is to find out what foods are oestrogen rich and take them out of my diet, interesting about dairy.
especially as I've been trying to top up calcium for my bone density and been making my own natural yogurt!
I've not had cows milk for years and oat milk is my preferred choice. Thanks for all the and info keep feeling good! XxAngi
Hi there thanks for your reply..I note you were told to stop taking Letrazole. Was this because you're risks were so small? I'm waiting to see a consultant as I mentioned earlier..but been told by a breast nurse doing a fitting for me that 'The panel' had said to stop taking it!...just like that with no further ado. Anyway I shall wait and see the experts and discuss my risks. Hopefully it will not take too long to get the appointment through.
how do you feel now you are off the Letrazole!?
Hi thanks for your reply..I have now been to the breast nurse..mainly to pick up a new prosthesis as mine was leaking silicone. Whilst measuring me up she said that there had been a multidesignatory meeting of doctors nurses and consultants about my case..i.e. Side effects on Letrazole and they'd decided as my risks were low and the tumour they found was so tiny.... I could stop taking it!?
I was surprised to say the least and said I'd like to SEE and speak with a consultant..I was then told they'd say the same thing as she had just told me! anyway I insisted that they make an appointment with a consultant..as I've so many questions to ask. Really very surprising. Just goes to show that you really do need to be firm on these things..it's my body, I've had a mastectomy and did I need to be on this awful drug at all? I await my appointment and will see what they advise, but will probably be told it's my choice in the end etc....
its been two weeks now since I took my Letrazole and although not feeling tip top I am not suffering as much as I did.
Watch this space! Xx
Thank you so much for your reply.
I get, here in Spain, thankfully. the original, so I am on Femara - no generic. And still the nausea. The onc. now gave me Aromasil which I will be taking just before going to bed. Maybe this will help. Have the feeling that he thinks it is psychosomatic - which is possible. Just have to put up with it. All the test were normal and he was, on the whole, very happy with me. One thing I do not want for IT to come bac k.
Any other advice from you out there would be much appreciated!
i have been on Letrozole since January and thankfully not too many side effects. Have you thought about trying a different brand of Letrozole.? I did have one brand Cipla which made me dizzy so went back to the doctor and got another prescription for a different make and it was fine . I was only on Cipla for just over the week. I decided life was too short and we have all been through so much so went to the doctors sooner rather than later. Just a thought, it might help. Hope things improve for you.
Help - has anyone taking Femara/Letrozole got constant nausea? I have been on it for appr. one and half years, very little bone ache BUT the nausea is not getting better as time goes by but worse.
My oncologist, sadly, does not really want to know: all medications have side effects when asked to give me something. My quality of life is zero because the sight of food makes me sick.
Have tried ginger tea and travel bands, with no effect.
I would be most grateful. Or am I the only one???
Love to all
Hi angabb54 just seen your post. I have been on Letrozole since January, either Dr Reddys or Accord apart from a very brief spell on Cipla. I felt dizzy all the time, went to my doctor who's lovely and told her I couldn't cope for the next 5 years on the Cipla brand. She gave me another prescription to get some more and has put a note on my medical record. Despite this I still get give given Cipla sometimes but I always check before I leave the pharmacy and if Cipla point out that my notes say not that brand. So far pharmacist has been fine and found another brand. We have to take this for a long time so you need to find a brand that agrees with you.
I have been back on Letrozole for about 3 weeks now following a 12 week break due to SE's, have found this time that by mid evening I get very very cold my hands and feet become like ice blocks, it's like the chills when you have a bad infection, can't stop shaking no matter how many clothes or covers I put on, this goes on for a couple of hours, didn't have this before it was usual joint/muscle pain.
Has anyone else has experienced this and should I contact my Oncologist or BCN?
Hi, I agree with you Carolyn...I don't feel too bad with Accord. I tried Cipla and Actavis.
I get my from Boots and tell them I only want Accord. So far they have been very good.
Hi. Carolyn just read your post and don't think I've gone balmy but the last time I went to pick my letrozole up the pharmacist told me accord was no longer available and after this batch it would be actavis brand instead I did have a bit of a panic attack as the accord suits me and I had major joint pain before but that was cipla brand I suppose I won't know until I've tried are you still able to get accord thanks love Judi xxxxxxx