Member
Posts: 1,206
Registered: ‎17-09-2016

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Mss55. 3 days after starting letrozole i literally couldnt walk. It was an absolutly rock bottom point for me. My BCN and 9nc asked me to persevere and after 3 weeks my knee joints were still stiff but the pain had lessened. Walking definitely helped me then! I now have arthritis in both of my shoulders though so 6 months on i am having a months break from letrozole to see if it makes a difference. After 3 weeks my shoulders are no better but i feel like a dark cloud has been lifted off me. I have an apt with my oncology nurse next week to discuss whats next! Hope you find a solution soon and your legs get better xxx
Member
Posts: 18
Registered: ‎13-05-2012

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Elke,

I too have had a lot of gastric problems since taking letrozole: stomach cramps, acid reflux, indigestion.  After three months I have decided to come off them for a couple of weeks and meanwhile make an appointment to see my oncologist. I’m hoping he might suggest a different drug. I can cope with joint pain but have found the gastric issues quite debilitating as I don’t enjoy meals anymore. Hope you seek some advice too and get some help.

Jo 

Member
Posts: 4
Registered: ‎15-11-2018

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Thank for your reply and help.

I am not taking any more until I see my breast nurse 20 Nov. I didnt take any last night and already my legs are working better. I am not the kind of person to moan or ask for help so its hard for me to talk about it.

Thanks again

x

Member
Posts: 4
Registered: ‎15-11-2018

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Thanks for your reply and help

I suppose we all react differently to medication and I must be one of the unlucky ones.

I didnt take any Letrozole last night and my legs seem to work better already. Am unsure what to do. I hv appointment 20 Nov with breast nurse am not going to take any till I have spoke to her.

Thanks again

x

Member
Posts: 4
Registered: ‎15-11-2018

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Thank you for your help. I didnt take any Letrozole last night  and already my legs are working a little better. Have got an appointment 20 Nov with breast nurse so I will leave it till then to decide what to do. I dont like moaning and am not used to asking for help so its hard for me to ask anyone.

I still cant leave the house at the moment so my dog will just have to get used to it for a while.

Thanks again

x

Member
Posts: 188
Registered: ‎13-04-2018

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Dear MS55, what a horrible shock you have had.

 

I agree with what Optimissy and Marla have said, that you need to see your doctor. It is a little too early to hold Letrozole responsible.

 

The full effects of Aromatase Inhibitors can take several weeks or months to kick in, as their aim is to deplete the body of oestrogen. Post-menopausally, oestrogen levels fall but we continue to produce it in our fat cells, and this has importance for various aspects of our functioning. The AIs and also Tamoxifen are designed to deplete our systems of oestrogen to reduce the risk of recurrence of cancer, but it takes weeks for this to be accomplished, and certainly more than a week. Some women have greater (and quite profound) problems associated with oestrogen depletion than others, but it can take a couple of months for these to appear.

 

Your experience must have been a terrible blow. Is there someone who could accompany you on walks with your dog, to help you regain your confidence? Or could you take your dog on a different route for a bit, where there are more people around should you need help? Just having help at hand could give you some assurance.

 

Very best wishes

Member
Posts: 242
Registered: ‎13-08-2018

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

[ Edited ]

MS55, I am so sorry to hear about your fall, but couldn't agree more with Optimissy and before reading her reply was going to suggest the very same thing: your fall may be unrelated to the Letrozole. Whenever we start a new medication (whatever the medication is) it is too easy to conclude that any symptoms/side effects are related to the medication. It may just be coincidence that your legs gave in (as unpleasant and scary as that was for you). 

 

I've been on Letrozole for 5 weeks, and though I do get achy knees at times, I *can* still walk, though admittedly I don't own a dog and haven't gone on my 17K walk in Greece (one I love to do whenever I go to Greece). That will be the true test for me! 

 

But back to you...I agree with Optimissy...see your doctor for a check-up and just make sure there are no other explanations for your fall or your knees giving way-sometimes these things happen to us for no reason at all and I do think that a one-off can be "inconclusive". If this were to happen to you each day or each time you took the dog out, I'd be more concerned, but as it was just the once (thank goodness) it may just have been a missed step, or a bit of a balance issue or something else very innocuous (nothing to worry about).

 

I feel for you but as someone who is taking Letrozole and who also worried about the "horrible" side effects that many women report, I am here to say that 5 weeks on and I feel fine, on the whole. So please don't conclude it's the Letrozole until you have more evidence. It's a powerful drug that can help us post menopausal women and according to my consultant at a very large teaching hospital in London-Letrozole (of all the hormone therapies) has the best evidence base and over and above the others. 

 

Sending lots of love and positive thoughts to you...xxxx

Community Champion
Posts: 788
Registered: ‎03-02-2017

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

ms55 that must have been horrible for you and very scary to fall down.

Please see your gp or talk to your bc nurse, as there may be other reasons unconnected with the medication why this happened - it seems really early on in your treatment for it to be the Letrozole - I would think it would take longer than a week for it to be settling into your system. But if it is the Letrozole, then there are other brands you can try, or other oestrogen inhibitors or, though you are post-menopausal, Tamoxifen may be prescribed which works differently but still protects against cancer recurrance. But if it were me I'd be inclined first to get myself checked over to rule out any other cause for a collapse like you describe. I do hope things improve. X

Member
Posts: 4
Registered: ‎15-11-2018

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hello

I hae been taking Letrozole for a week, I cant walk or function. My legs gave way whilst out with my dog and I couldnt get up. I just sat there crying till a kind person helped me up. I was so embarrassed. I seem to have most of the side effects listed. I phoned doc and they said try to persevere.

I think I will give it one more week and then just do without it. I dont care if the cancer comes back. I enjoy walking and other outdoor sports and now I cant walk. My poor dog is stressed out because she is used to long walks in the woods. What is not what if. 

Good luck to all the ladies taking this horrible medication

Member
Posts: 188
Registered: ‎13-04-2018

Re: Sucralose (sweetener)

Hello Pippi

 

So sorry you are worried about your weight; I do hope you get some good advice from Weightwatchers.

 

Artificial sweeteners are not any better for us than sugar and can prompt their own problems, so it is down to you which you prefer.

 

To reduce weight, we need to reduce our intake of fattening foods, but that doesn't mean removing them from our diets altogether, just getting the right balance for us. Here is a link to some helpful information on the Breast Cancer Care site for Healthy Eating.

 

https://www.breastcancercare.org.uk/information-support/facing-breast-cancer/living-beyond-breast-ca...

 

They stress that reduction in the quantity we eat will lead to weight reduction, so reducing the amount of sugar you have in tea and coffee, rather than cutting it out altogether, would help. You might also find it helpful to list for a week or so what you eat everyday. That would give you some pointers to where to start with reduction of fattening foods and increase of fibre.

 

How much exercise do you take each week? Increasing that, initially very modestly, can also help.

 

Best of luck.

 

 

Member
Posts: 69
Registered: ‎31-07-2018

Sucralose (sweetener)

I have just joined Weightwatchers as I have put quite a bit on since my diagnosis due to too much eating, being at home and not working. 

 

I am a bit confused as I have always used Sucralose in teas, coffees and cereals but since breast cancer was put off as its not a natural product but have just read on the NHS website that its harmless and does not cause cancer.

 

since my diagnosis I have started using sugar but I want to lose weight so dont like to use sugar and yes I have tried not using any sugar or sweetener but just cant drink coffee or tea without it.

 

Just wanted to find out what others think or know about this topic

Smiley Very Happy

Member
Posts: 69
Registered: ‎31-07-2018

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi sorry I took long to reply. I'm glad the calcium and Vit D tabs are helping you I will get some today Smiley Happy

Member
Posts: 6
Registered: ‎15-07-2018

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Anniej

Thank you for your concerns, you are very kind. . I had a long chat with my B/C nurse yesterday as I have had palpitations and we also discussed the bone scan, but I am still persevering with one tablet a day of letrozole.   My surgeon wants to see me again this Friday to discuss my reluctance to have the bone scan.  I am thinking of agreeing to it (once again).

 

It isn't the scan that bothers me, it's the 3 to 4 hour wait between the injection and the scan, and having to drink 3 to 4 glasses of water, and walk along long corridors.  I have got a degenerative lumbar spine disc disorder which has misaligned my back, making walking very slow and difficult and I have to sit down every 50 yards or so which immediately relieves the backache.

 

Paulus mentioned self prescribing, and I agree with her that I would not be too happy with any side effect which cripples me.  I am running a family home with my two adult sons, who are both on powerful medication for non-curable conditions,so I am their main carer.   I am also still driving and have just re-newed my licence, just like Appletree's friend.  So of course, I am scared to bits about what may or may not happen  in the near future.   

 

Everyone on this forum has their own problems to contend with, yet  they have written kind words of support and advice for this  stubborn old lady.  Just wonderful all round, thank you. 

 

Best wishes to you all. 

Community Champion
Posts: 1,046
Registered: ‎21-01-2017

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

[ Edited ]

Hi Tinkerbell, I'm very concerned for you on a few points. I have been on Letrozole for 2 years, plus a trial for Palbociclib for a year . I have had to tweak my Letrozole brand to get one that suits me, and also the time of day I take it.  My oncologist is more than happy to chat and explain everything to me. I take a list of questions along to clinic every month,  but he invariably answers everything before I can ask! My lead nurse is the same. In fact I pop into Maggies where she is based every week for a cup of tea and chat. It seems you don't have that relationship which I feel has left you short of professional support. I think you have made a very general, and sweeping statement re NHS. Perhaps I'm very lucky as I am not far from both hospital and Maggies centre. This relationship means that I trust their medical advice and know that my success is their success. As I haven't tolerated Palbociclib very well he has altered my prescription and schedule so that I am managing the dosage and consequently my secondary mets have shrunk. I am not a medical professional, and although I think I am very well read on my meds, reading is not researching. Research is funded, has a beginning, a middle and an end. My personal feeling is that twiddling with dosages without any medical knowledge could do more harm than good. 

 Finally, as the chief Onco here reminds all us secondary BC girls , Google is not a doctor, and the daiky newspapers are not medical journals, no matter what they print.

You appear to be a very strong person, and I wonder if you could use this strength to have a constructive and positive discussion with your professional team, either face to face or on the phone. Are they aware you are self medicating? You don't actually say. I am really worried you are putting your health at risk. Best wishes. X

 

Member
Posts: 138
Registered: ‎10-08-2018

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi, 

 

I was automatically prescribed Evacal D3 1500mg ( apparently these replaced AdCal ) when prescribed letrozole.  I have some scoliosis in my lower back, and have had back twinges for years - I'm 63 and was diagnosed in March this year - and the bone/DEXA scan showed 'some' bone thinning.  I declined the offer of bisphosophonates though, as I won't risk any 'jaw necrosis' as I have pretty rubbish teeth as it is.  ( I think I was extremely fortunate that it was the therapeutic radiography consultant who told me about that, in that it is rare but it does happen  -  I don't think the oncologist agrees with my self-prescribing, which is fair enough, but I have to live in this body, as much as I appreciate her help and advice ).  I've been on Letrozole since June/July.  I can't honestly say if they are causing me any problems, but my joints are definitely clicking a lot more !! All the best everyone x

Member
Posts: 366
Registered: ‎09-10-2016

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi.  Yes I do.  I take the calcium tablets from H&B with vitamin D combined.  I think they are really helping me, so not just in terms of healthy bones, but my legs and joints.  I stopped taking them for two weeks in the summer and I could hardly walk.  I have no idea if this is scientifically proven. But this is what I have found.  Good luck.

Member
Posts: 69
Registered: ‎31-07-2018

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Do any of you take vitamin D and calcium tabs to combat bone thinning from Letrozole?
Member
Posts: 69
Registered: ‎31-07-2018

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Flora B sorry I took quite a while to read your message. I have been on the Letrozole now over 2 weeks and the only thing that has changed is that I feel a bit achy in my lower back and that's one of the side effects but nothing else. Anyway I will see what else may happen as it's still early days.
Yes it is a very individual thing but it's nice that you can exchange experiences on here though 😊
Member
Posts: 242
Registered: ‎13-08-2018

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Tinkabell,

 

Well done on the Letrozole! I genuinely believe that reading about other people's side effects can influence what we experience, and I anticipated having every awful SE under the sun, but it's fine! I'm sorry to hear about the bone scan; perhaps you can schedule it for another day when you feel more mentally prepared for it? At the end of the day, it *is* your choice.

 

Keep us posted, OK?

xxxx

Member
Posts: 188
Registered: ‎13-04-2018

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Tinkabell

 

It's very good that your BCN is kind, sympathetic and ready to act as your advocate; don't every feel that you shouldn't contact her because other patients have a greater need, you are just as important as everyone else.

 

As for Macmillan, it's not necessary to have been asigned to them by your hospital in order to obtain help from them. You can phone them on their advice line, Macmillan Cancer Support, at 0808 808 0000, and find out how they can help you in your part of the country. A friend of mine who lives in a rural village in North Yorkshire, who hadn't been assigned a Macmillan nurse either, contacted them and was able to arrange for weekly home visits from a Macmillan nurse who gives him counselling sessions to help him cope with everyday life. He has cancer of the bone marrow, but at present is still able to live a reasonably normal life and can still drive. Thanks to this nurse, he is able to keep more cheerful and make good use of everyday to his satisfaction, whilst allowing for fatigue and other limiting factors.

 

All the best, and I do hope you can enjoy some pain free time.