I’ve been on Letrozole for 18 months. My main complaint was throbbing pain in my body all night. My oncologist told me to take Turmeric for the pain. I’m taking 2000 per day. I also take Magnesium and Fish Oil at the suggestion of others who take Letrozole. It really has helped.
If it was evidence based practice ( and I am a retired Registered Nurse so know a lot about this) then it would be standard practice across the UK for Oncologists to prescribe Vitamin D and calcium. They do not. Partly as they can be bought as OTC (over the counter) tablets or online. The NHS conducts audits to ensure practise is evidence based, this is quite rigorous. It is of course up to us as people who have had cancer to read up as much as we can to optimise our health and believe me, I have done this and still do. I find your comment quite rude.
Regarding Oncology follow ups, my last one was telephonic and I wasn’t impressed as the copy GP letter I received didn’t reflect accurately what we had discussed. My next one due shortly is also telephonic. They are yearly. I agree a physical examination in a face to face appointment is much better, but Covid19 has affected so much.
Hi Cumbrian and Surrey:
Having this forum shows that treatments and monitoring vary across the country. Also, treatments are individualized. I did have one telehealth visit shortly after the first Covid lockdown, but my medical oncologist recommended an in-person visit a few months later with Covid precautions in place.
Notwithstanding the variations in doctor visits, research shows that Vitamin D and Calcium are necessary to prevent bone density deterioration. No matter how healthy we eat, with Letrozole known to negatively impact bone density, supplementation is recommended to combat the effects, so we can have good bone health at the end of the treatment.
Additionally, we have to advocate for our care especially when we have concerns. Expressing these concerns does not mean we not thankful, it means we want optimum care to promote our overall wellness. Recently, my 82-year old mom was sick with pneumonia (not Covid related) and was on a ventilator for about 5 days. She survived and is recovering. I can't begin to tell you the number of times I had to speak up at the hospital, and at the Nursing Home where she had rehabilitation before coming home.
Best wishes to you all as you continue your treatments, and seek the best solutions for your care. Blessings, always.
its not a debate....it’s evidence based practice to prescribe a combined vitamin D3 and calcium Supplement.......you just need to do a basic search of the literature to see this. So having a good dietary intake in itself is not enough.
I do agree however that 6 monthly check up are definitely not standard care.
Hi @YvonneS Seems to be different treatment times around the country, I am not going to see any of my treatment team every six months, in fact, all of my oncology appointments have been via telephone because of Covid which has made information gathering about my own specific case very difficult.
Yes, I have read all the leaflets provided and searched online but it is not the same as being able to sit face to face with your oncologist and ask those relevant questions specific to me.
I am on Letrozole started 6 weeks ago, again nothing but a leaflet, bone scan before I started them, and the promise of Vit D at the end of rads - if not for places like this I would have been largely in the dark. I accept GPs, Doctors etc need to be Covid safe, (but the nurses have worked through it) albeit wearing their masks and whatever - but they are seeing patients face to face...cancer is not something to be left for the patients to have to go searching for info, coming to terms with the illness is bad enough.
Don't get me wrong I am grateful that all my treatment went ahead but there have been HUGE gaps in the information and help I have received especially as I have gone through all of my diagnosis and treatment alone.
Just to add to this debate that Vitamin D and calcium as you say are necessary for bone health, but ensuring you have a good dietary intake should be enough. Regular weight bearing exercise is important too, as is avoiding smoking and excess alcohol. Vitamin supplements aren't the go to.
6 monthly checks by oncologists aren't standard care, at least not where I live. Perhaps this is different in your area.
thanks for you message. I had one bone density scan at the end of 2019 6 months after start of Letrozole treatment and nothing since. No advice and only 1 CT scan Feb 2020 and 1 ultrasound Feb this year.
I will be taking the clinic to task on the 29th next week as I am really cross with being dismissed by the nurses who never seem to be available when
I am surprised too that you were not told about Vitamin D and Calcium. Letrozole negatively impacts bone density. You should have had a bone density test prior to the beginning of your Letrozole treatment. The medical oncologist renews the test about every 2 years to see how your bones are doing from the last test results. The goal is to avoid osteoporosis.
I see my medical oncologist every 6 months to monitor my Letrozole, and my surgical oncologist every 6 months as well. I believe that is standard care for breast cancer survivors, so please look into it.
At this point, Covid should not be an excuse to see your doctor in person. I hope you are able to take care of this, and I wish you the very best.
I’ve had no joint pain nor arthritis since having celery juice on an empty stomach every morning for 2 years now. Good quality magnesium supplements a must along with calcium and vitamin d. Don’t rely on your doctor, always back up any advice with your own research. Compliment with an holistic GP. Best wishes
All the ladies i know on letrozole ( myself included) take a combined vit D3 and calcium supplement .....maybe ask if you need the calcium as well?
just had a conversation with my GP who said my Vitamin D levels are extremely low (21) and has prescribed a massive boost that I have to take for three months only 1 tablet per week. Apparently I am also anaemic.
I only know because my GP insisted on a blood test, and he said we should all be monitored every 3 -6 months. He thought this was done automatically by the clinic.
He was not impressed that neither the oncologist nor the clinic nurses mentioned the need to take vitamin supplements during treatment with Letrozole and that I haven’t seen an oncologist for a year, all I get told is that I am “responding well” to treatment. How would they know as a telephone call by a nurse is useless and it was based on an ultrasound at the beginning of the year. I have never received anything in writing.
Still, I suppose I mustn’t complain as there are people out there that are worse off and have had their treatment stopped. I think if I hear “it’s the covid” once more as an excuse for the NHS doing nothing, I shall scream!
Please can you educate me too because I cannot deal with pain off joint pain especially in my fingers I'm taking multivitamins and minerals along with fish oil but it's useless. Cannot do anything my whole body aches mainly all my fingers and lower legs.
Hi, please google DR AXE very helpful on vitamins! Magnesium will help with your joint pain! The reason i get my vitamins on prescription is because i had to educate my GP!!! They know very little about how a combination of vitamins work together. I did a lot of research and so glad i did as i am now pain free. Good luck
Hi, it is so annoying GPs and my oncologist never mentioned how important it is to take supplements while on Letrizole. I had to do my own research! I have been on Letrozole for 6yrs now with NO problems since i started taking calcium D3, K2 and Magnesium. (I had severe side effects in the 1st year and now free from pain!) Please google DR AXE on these amazing supplements especially Magnesium and remember to leave 2hrs between taking them. Good luck!
Hi, have been taking Letrozole since August 2019 and the side effects have got progressively worse, so I can hardly walk due to joint pain. I have not seen my consultant since February 2020 and when I have raised issues with the team at my local clinic I get fobbed off. My GP recently had blood tests done due to hair loss and gout-like symptoms and found I was suffering from Vitamin D deficiency and am now anaemic. This side effect of low estrogen was never mentioned and there is nothing in the leaflet that comes with the medication.
The Americans have been aware for at least 10 years that Letrozole can cause gout-like symptoms and vitamin deficiency. Why aren’t we kept informed?
I am due to see my consultant at the end of April so hopefully I’ll get some clarification
I was worried too about starting Letrozole and scared myself reading too much on side effects. I started 4 weeks ago and also started taking vit D at same time. I was washed out in week 1 and could barely do anything but I had my COVID jab earlier in week so could have been a result of both things. Since then I have been fine and can’t really claim to have any noticeable side effects. I am doing daily exercise and Pilates stretching on demand which helps me.
I will keep aware of the joint pain side. I take my tablet at night as I was advised that would mitigate any big hot flush impacts. I am sleeping heavier than I ever have.
good luck with your journey.
I'm on letrozole for over 7 months now after a metastasis op. I had Tamoxifen which was perfectly okay for me after mastectomy but as my Oncologist commented it did not worked well as it came back to my axillary lymph nodes after 4 years.
I experienced the following:. Sudden ankle pain when walking but not all the time, it will recur at times, right hip pain similar to wrist pain recurring. When those pain happens I would be on the floor if I don't stop walking, that severe. But it take only minutes when it happens & gone. I had also a severe psoriasis on my face & neck & difficulty in sleeping or staying asleep. Tiredness was bad. I have wrinkles & dry skin, but I'm 64 so I don't fret with that. Just few days ago I noticed my toe nails are flaking.
I have osteoporosis diagnosed few years ago & Im in Prolia injection after a year of my osteo. Prolia is 6 monthly injection.
I'm in Vitamin D3, Calcium, Vitamin C, Magnesium & zinc. It's too much to remember, through research of my own I'm on Ultra Vitamin B complex & dropped magnesium since Bcomplex has enough magnesium & if I haven't eaten I won't worry taking my calcium too.
Now My pains gone maybe because of PROLIA, my psoriasis controllable because if ELEUPHRAT, my sleep is sound because of PHENERGAN & taking Letrozole in the morning instead at night. My tiredness negligible now maybe because if my VITAMIN B COMPLEX. My skin I use liberally SOBOLENE moisturiser which is very effective for my dry skin.
My doc has some hit & miss prescription. The worst was Tramadol Rapid. I was throwing up & dizzy.
Through my demand to get doc referral to get MRI when I have pains, I had discovered more, I have bulging disk.
Now I'm ok. I was back at work after few months on leave. My tiredness still occur when I lack some sleep. All I need now is regular exercise which I'm too lazy & unmotivated. I'm not big I'm just 52kg & 152cm tall.
I think, LETROZOLE is good. It only needs some other means to ease side effects. By itself, is a struggle. Also taking Vitamins on a certain time & no contradiction with another supplement (i.e. V-B must be taken in the morning first thing on an empty stomach), to make it useful for the body systems.
Research on the net & see to it in reliable sources.
Thanks for your information, I did not know they have magnesium vitamins prescribed. I will speak to my medical oncologist about it. I do have severe joint pain from my shoulders to hips, thighs, feet, and hands. In an earlier post, I had shared how massage therapy and exercise had helped greatly. However, with the Covid Pandemic, I had to stop my massages, and it shows. I was happy to hear your story about vitamins that work, and even though our bodies react differently, it is still good news. Best wishes to you, and thanks very much.
Yvonne, I take Lamberts MagAsorb, 2 150mg tablets per day, morning and night. I get these on prescription, also Adcal but don't take together, leave 2/3 hrs. With or without food. Also take k2 with food, good combination.
i talked about the benefits of magnesium for me in here about 12 months ago, still going strong. Magnesium supports the muscle aches, which eases the pressure in the joints. What I've been using to rid of the joint pain is celery juice, at least a cup every morning on an empty stomach 30 min before breakfast. Celery is an anti inflammatory wonder food, as joint pain is inflammation. Acidic foods will inflame the body, so trying to alkaline it through the diet really helps.
Can you share the milligrams you are taking for the Magnesium? Or, do you have 1 supplement that has all 3 ingredients you named. Thanks!
Oh the first one to mention Magnesium! Yes you must take the combination of calcium D3 K2 and the magical MAGNESIUM. I have been on Letrozole 6yrs. I literally couldn't get out of bed! every bone and muscle ached! Since adding Magnesium it disappeared! No more side effects!
I have been to chat rooms for the past nine years and am grateful for all the input each of you have given. I haven’t responded before now because I just don’t do chat rooms. So I decided to respond this time because I am making a big decision of possibly stopping letrazole. I'm 70 year old at this time. I was diagnosed in 2012 with estrogen receptive breast cancer. I had a left mastectomy with it being stage 1 and no recommended treatment following surgery. In 2016, 5 months before the five year mark, I developed cancer on the same side which became stage 3 and had gone into the muscle. Radiation followed. They put me one arimidex and after 3 months I stopped it because I could no longer remember how to do things in my work program (I was still working) and if I hadn’t had GPS I would not have remembered how to get to clients homes and back. Some 3 hours away. I tend to do a lot of research so read Dr. David Servan’s book, “Anti Cancer a new way of life”. He had been diagnosed with radical brain tumor and treatment twice and was told he had six months to live. He wasn't ready to die, as he put it, and researched ways to help himself. He lived for 20 years more. In 2018, I was diagnosed with metastases breast cancer of C5-C6 cervical cancer outside the spine. I had radiation and was put on Letrazole. Nothing more can be done.
On letrazole, the side effects started early. All of the ones that you all have mentioned. Yes I felt like the bottoms of my feet were like cardboard (someone said for them it felt like Dutch wooden shoes). The exacerbation to my joints was so bad that I could hardly walk or use my arms (shoulder pain). I’ve been on plant based diet for some time. I take supplements. I see integrative doctor who does acupuncture. He has kept me going pretty well until this 2nd year of letrazole. My oncologist told me that I’m not killing myself with letrazole but it will affect my quality of life. He told me to stop it until 9-4-20 at which time I have another MRI and CAT scan. It has only been 7 days and already the cardboard feeling has left, my joints are less painful, I can get up out of the chair and walk again. Nausea diminishing along with other side effects. I am considering stopping. I have been reading a book and saw youtube by Dr. Stephen Jenkinson on “Die Wise A manifesto for sanity and soul.” Steven Levine wrote book, “One Year To Live” which is very helpful too. A friend asked me a question recently, “Is everything better than death? I am contemplating this question but I don’t believe self imposed suffering is better for me. Death for me is (and I’ve meditated on death) like a compassionate being taking us back into their arms. I’ve written a manual for family and friends, called “transition from life to death, you can be prepared. These are my thoughts, take what you want and leave the rest. Best to you in your journey. Peace.
Pretty tough is an understatement and a half.
It is total crap but it has taken around 3 years and I am beginning to feel like me again - occasionally.
You will get there - just don’t feel obliged to be brave or stoic all the time - we Breast cancer women go through the mill big time even when the cancer has gone xxx
I suppose our bodies get used to it after a while. The entire treatment programme is certainly challenging and getting through it is pretty tough.
Thanks so much for your comments.
I have found the side effects reduce as time goes on - I take Lyrica and Ibuprofen for the pain which seems to work. I also found Vitamin D with Calcium helped.
Yes, Jo please do persist as they're an important part of our treatment and as stated before not everyone has side-effects. Also from what I've read even if there are any in the beginning, often they can subside. Let us know what it goes and best of luck!
Ooh so that may explain why im not on accord now and im on glen msrk few aching musckes but ny first scsn since diagnosis showed considerable shrinkage. So il carry on with them good luck anyone starting then xxxx. =+h+k
It's costing a lot of money, I suppose if they are willing to spend so much on keeping us alive the least we can do is to take the tablets.
Your message is so helpful, thank you. I'm just a huge wimp!
Thanks to all the positive messages here, I've just taken my second one this morning.
Another step forward....Good luck!
Not everyone reacts the same JL as I've been taking Letrozole for over 3 years now, with little or no side-effects at all! Occasionally very mild, barely noticeable joint pain which subsides very quickly. While I am tired, this could very well just be the product of all the treatment in the last few years. So I would definitely try it if I were you!
I started on Accord brand and haven't found much difference with the others, either. The pharmacist (part of a chain) took me aside one to explain they may not be able to get this one and when I asked why she said it was all down to costs. Apparently each pack costs £180.00! The current one is a Sun Pharmaceutical one. However, have heard of many others who favour one brand over the others.
The brand is Cipla, only my second tonight so we'll see how I get on, fingers crossed!
I was taking to a friend of mine today who has been on the same and hasn't really suffered at all so it all depends I guess.
So sorry to hear you are so far from here Chelle, ah well, maybe we can compare notes on here.
Tattooed and bald! What a life.
I am up in Liverpool. Hope your Rads go ok as well.
Also I am on Manx brand of Letroxole
Thanks so much, I'm crossing everything and hopeful. The brand is Cipla.
I hope the side effects minimise for you.
Good luck xxx
Thanks so much for your response its given me a boost, I'll take your advice regarding the timing of Letrozole.
I hope your radiotherapy goes well on Monday. Just to say, I'm at Maidstone in Kent in case you are there too.
Good luck with all the treatement.
I dont blame you dreading the side effects what brand are you on? Eveeyone varies when they take it I take mine a round tea time and on Glenarmark originally sches and pains in legs especially when got up but now im settled with it. Hope you dont suffer with any side effects
I started on Letrozole yesterday, I had a lumpectomy on the 16th January and am ER positive, HER2 negative, grade 1 tubular breast cancer. Radiotherapy will start prob beginning of March for me.
I'm feeling quite energetic at the moment but realise I'm only half way through treatment so I do need to pace myself.
Dreading any side effects of Letrozole, how long does it usually take? I know its different for everyone so just an idea would help.
I'm also taking mine in the evening before bed.
I have been taking Letrozole for the last 8 weeks. I take it around 6.00 pm and so far only side effect has been minimal hot flushes.
I too start radiotherapy on Monday
Keep Smiling, you will get through this x
Thanks so much for the positive post. I have the boxes of Letrozole but can't bring myself to start them. I'm due Radiotherapy next Monday and thought I would hold off until after that. Every part of this cancer treatment holds its side effects and as you say we are all different. Fingers crossed for everyone going through this. Keep as well and exercised as you can I think it helps.
That’s fantastic. I’m happy to hear that. I didn’t realize osteoporosis could be reversed. That gives me great hope that I can get better too.
All a great start Marjie, let me know if you get any relief.
Ive recently had a win..... had my bone mineral density test last week, and the initial one 12 months ago reported osteoporosis in my spine. I’ve exercised and changed my diet and it’s paid off, no longer have osteoporosis it’s reduced to osteopenia (& I’m still on n letrozole!) so glad for the small reward!
Thank you for the advice. Honestly I am just not able to add more outside appointments at this point. I can barely get up off the couch. But I have now done some research and I have ordered magnesium, fish oil and vitamin d supplements. I have looked into diet recommendations and this will be harder for me. The idea of giving up dairy just doesn’t seem possible. Also, apparently even heating up foods causes problems. It hardly seems reasonable to suggest eating only cold foods. But I can give up red meat and substitute cornstarch for white flour easily enough. And eating more fruits and vegetables seems like a no brainer. So we will see what happens.
Have you sought advice from a holistic GP? I had aches and pains until I decided to consult holistic practitioners. Also, I swear by a glass of freshly juiced celery juice on an empty stomach each morning. Has changed my life and cleared up my arthritis too. Increase your magnesium supps as will help to relax the joints. Cut out all sugar, and cut down meat and dairy as they are acidic and inflames the joints. Go alkaline as much as you can. Don’t just rely on medical doctors, need a holistic approach, seek alternative options to back up your meds. Good luck.