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!
Magnesium is Amazing!!! A combination of this plus calcium, D3 and K2..No more joint pain!
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.
I was trying to be polite Joeyaff, but I completely agree with you and more........
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.
So far so good! 🙂
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.
I had a horrible diarrhea problem a few months ago and after having no luck with my Drs solving it I finally decided to try going off of all my meds except for my bipolar meds which I’ve been on for 25 years. After 2-3 days the diarrhea went away so I started reintroducing each med one by one. Turns out it was the lisinopril and metoprolol that we’re causing it. Since then I’ve switched to Norvasc and except for a couple of times I ate ice cream the diarrhea hasn’t returned. I just wish the joint and bone pain issue, that I now am convinced is caused by the Letrozole, would clear up as quickly. I stopped the Letrozole last week and I’m going to give it as long as it takes to see if the side effects clear up. I’m not taking this horrible med any longer.
I understand your statement to not stop the med without talking to my Dr but I have been dealing with this for four years now and it’s gotten progressively worse. Initially I walked with a limp but now I’m on a walker and can barely even stand up. I actually had to crawl into my house the last time I went to a Dr. appointment. I almost never go out and when I do it takes me days to recover. I live on my couch. I can’t do ANYTHING. I lost my job. I’m only 52 and I feel like giving up. I have talked with my Drs (my oncologist, my FP, and two orthopedics) and I’ve tried three different meds and I’ve stopped for a month a couple years ago and it didn’t help, so the oncologist says it’s not the meds causing my problem. One of the orthopedic Drs just told me to lose weight and sent me on my way. So last week I finally stopped again and I don’t plan on going back on it. It’s my only hope—that if I give it enough time the legs will get better. I read someone in one of these chats was feeling better after ten months. I really don’t feel I have any other option. I’ve been on these meds for four years and my bloodwork always looks good so I feel like I’m in the clear with the breast cancer. At this rate it’s not going to matter anyway, as there is no way I can get out for treatment if the cancer does come back.
I had a lumpectomy for non-invasive DCIS 10/2018, followed by 6 weeks of radiation (Post-menopausal). I started Letrozole at the end of January 2019. My manufacturer is Apotex. A couple of months later, the joint pain started in my hips, thighs, shoulders, and lower back. Later on, I developed pain in my feet and hands also. My primary doctor recommended physical therapy, which was very helpful. I continued the exercises after completing therapy, and I started massages twice a month with a licensed massage therapist. My symptoms slowly improved. Recently, I tried Dr. Motions compression socks, and I notice three weeks later that I had more improvement in my joint pains: hips and thigh especially and feet. My massage therapist has been working on my shoulders and lower back and both areas are much better especially during the night. I am continuing with these efforts as I decided not to take pain medicine to protect my stomach. I still struggle with fatigue, and I have to rest more after I come home from work. I am sharing these efforts, though I am aware people respond differently to treatments. I encourage my fellow survivors to try a variety of strategies to see if any will work to provide a better quality of life before making the big decision to quit. Letrozole is tough, but hopefully, more of us can stay the course.
Hello Dear Chat Members,
I wanted to tell my story regarding my experience with Letrozole, in case it helps inform anyone else about whether to take it. Earlier this year the oncologist switched me from Tamoxifen to Letrozole, after I underwent a hysterectomy (and so was postmenopausal.) I was on Letrozole for 4 months and had terrible side effects. I am 50 years old, 120 pounds and big into yoga. After about three months on Letrozole, I couldn't get into lotus position anymore due to terrible knee and ankle pain. Even daily activities were painful: taking my shirt off hurt my shoulders, getting out of bed in the morning, I would limp like I had arthritis, due to the pain in my feet and legs. I know that Letrozole is more effective than Tamoxifen in protecting people like myself from recurrence (Stage 1 breast cancer, hormone positive), but I was getting seriously depressed from the pain and the oncologist agreed to switch me back to Tamoxifen. Good news! The side effects have slowly diminished and I am able to do yoga again without pain. It took about a month for the effects to wear off. Tamoxifen has its own side effects (hot flashes) but much more manageable. For me, the slight difference in effectiveness between Letrozole and Tamoxifen is worth it for the quality of life improvements. I wish everyone on this group health and peace.
Would it be too much to ask for a "roundup" of the research that you did? I am trying to find some basic statistics i.e. post menopausal women who took Letrozole for five years following breast cancer reduced their remission rate by ???? versus the same number of menopausal women who did not take Letrozole.
Another problem that comes up reading masses of medical tests, is just that their goal, of course, is focused on the medication and the side effects are given second fiddle (bone loss, arthritic pain, etc...)
nk you in advance. Been on Letrozole for four months. Osteo Tscore is -3DS. Dizziness, nasty diarrhea
I would love to go into appointment with Onc with some ammunition.
Thank you in advance.
Hi, I'm on Teva brand of Letrozole and think I am managing well with it. I'm also on Palbociclib for secondaries, and the two together can make me feel a little nauseous. My GP has no problem prescribing Metaclopramide for this. It's the drug I was given with my chemo. I always carry some with me, but tend to take one first thing in the morning at the beginning of my Palbociclib cycle . The Cipla brand doesn't agree with me at all, and I feel quite fuzzy first thing, with some joint pains. Hope this helps. X
Hope the change of brand suits you better Lupin. Took me 4 chemists before I found one that would supply Cipla so hoping it continues to suit me! Xx
Hi, thanks for replying. I'm on Accord. So that is obviously part of the problem . I'm getting a different one when this pack is. Finished so il let you know. I've also discovered that the blood pressure pill lisinopril has it as a side effect too. So know doubt the combination . Doesn't help. I can be fine for a day or two with the loperamide and then I need two . It can be difficult for going out . Yes I get the cramping. I thought about taking something for that but worry that I would just not know when to go.
Anyway keep smiling I should have my second year mamogram soon so I'll keep in touch .
Hi Lupin, interested to read your post about the diarrhoea 🙈 I started on the Cipla brand and took for 15 days with no issues, changed to Accord and have had regular bouts of 💩 along with cramping. Started Accord 18 days ago, and it started after the 6th tablet. I do have IBS and did suffer with the Docetaxol but things were definitely improving before I started the Letrozole after surgery.
Has anyone else had this problem 🙊 What brand are you on Lupin?
Spoke to my BCN today and we’ve decided to go back to the Cipla brand (I’ve got 13 left) and see if that makes a difference. I really hope it does and would also prove the difference a brand makes. Will let you know.
These are some of the side effects I read about if this helps.
dizziness, drowsiness, weakness, tired feeling;
hot flashes, warmth in your face or chest;
flushing (warmth, redness, or tingly feeling);
bone pain, muscle or joint pain;
numbness, tingling, weakness, or stiffness in your hand or fingers;
Hi - I have been on Letrozole for six months. Never had a spinning sensation but do feel quite foggy especially when I wake up. I'm also more tired than usual. I hope your symptoms pass and things improve.
Hi, I've switched from Tamoxifen to Letrazole and am coming towards the end of my first packet, but have noticed that I feel dizzy in the last couple of days, it's a bit like sea sickness, and last night I felt like the room was spinning when I went to bed. Is this normal, will it pass? I was really lucky and didn't suffer any symptoms with tamoxifen, other than the standard hot flushes. Thanks x