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.
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
Iam72 . I have the sweats and painful joints .been on letrozole for two years this year. I also have diahreaj. It's so annoying .i take Imodium most days. Doctor knows . I am now going to check the kind of pills and see if makes make a difference. Being older I don't have to worry about going to work as I feel that must be very difficult for people. I took thrombosis after the operation and of course that took months to sort..
I now have osteoarthritis in my right leg and am doing exercises to try and straighten it . Same one as thrombosis.
Everything does get to me at times and my poor suffering husband.
Anyway let's hope things improve with time. Lupin
Hi. I am 73 in May and been on letrozole just coming on two years. I have the night sweats aching bones but have osteo arthritis in a knee so getting Physio . To help it I have the problem of diahreaj about two hours when I eat after the pill so now have Imodium from doctor plus cocodamol which helps. I think about my age it's hard because you get slight nervous problems and this little pill can emphasise them . I also took deep vein thrombosis after the operation and that took ten months to sort out . Yes I get weepy but it's frustration as I still want to do more . I'm pleased to hear your complaints as I don't feel so alone. My poor husband copes brilliantly., bless him . I shall now look at the make of the pills and see if the pill matters.
Keep smiling .lupin..
not too good news. Got taken off the Exemestane about a week and a half before Christmas. Developed same effects as letrozole. Felt like I was going mad and had many tears. Had lovely rest off tablets for a couple of weeks over Christmas. Went back on letrozole, terrible, then changed back to Exemestane. OK for a week and a half then back came all the side effects. Off everything now for six weeks then have to decide whether to either risk not taking anything or combining one of the tablets with anti depressives which have their own side effects. Feel quality of live is as important as quantity. Even on the tablets there is no guarantee the cancer will not return. Hope you’re having a better time on them than me. I wish you well and will let you know how I get on after Easter. Would love to hear from you again. Xxxx
My problems with Anasrozole were confusion, tired, exhaustion, feeling like I got hit by a brick wall. After two weeks, I had to stop. It was affecting my whole life. They wanted me to try again but I declined profusely! I’m on Letrozole now for ten days now. I keep falling asleep, hot flashes are worse than ever. Feels like pins and needles running through my body. I’m recovering from rotator cuff surgery. They had me wait until Vicodin was out of my system. Only took them fora few days. Anyone else have these problems? I nod off all day long. I go out and I’m so tired. I get out and walk around for exercise. If this tiredness doesn’t go away soon, I don’t want to keep taking this. I had a 6mm small lump, 2 lymph nodes, chemo 4x, 30 proton therapy treatments.