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LETROZOLE SIDE EFFECTS; PLEASE HELP

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

I’ve been on Letrozole for 13 months, and apart from the hot flushes ( which are less now I’m wearing a Lady Care magnet) haven’t been too bad. Has anyone else developed frequent urination and how far through treatment when it started? My GP doesn’t think it is the Letrozole due to the amount of time I’ve been taking them and all the tests she requested have come back negative thank goodness.

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hello Jo,

 I have been on letrozole for 30 months now. I was on Arimidex for 10 months prior to that. In another 20 months I will be done with my five years and I can’t freaking wait! I have had severe reflux and digestive issues from day one. Switching from Arimidex to letrozole didn’t help. I have managed the reflux and digestive issues by changing my diet and seriously watching what I eat. When I can’t take the pain in my throat anymore I take a Pepcid AC which does help some. I suffer From arthralgia also which is a side effect of aromatase inhibitor’s. This coupled with the insomnia, frequent urination and sadness makes life extremely difficult.  As I have made it this far, with just over 1 1/2 years to go, I’m going to hang in there. But there is no way in hell anyone will convince me to take it for any length of time after my five years is up! I’ll take my chances !!!!!!

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

I'm fairly new at this.  Had a needle biopsy in October.  Stage 1 so surgery postposed until i lose some weight.  Started Letrozole in November with some hot flashes but have now developed upper back pains, breathlessness along with some dizziness.  Oncologist office said discontinue Letrozole for 2 weeks then go back on it.  This is to verify that it is the meds and not something else.  Good luck.

 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi, having read your post, I have been contemplating giving up on Letrozole. I had a Lumpectomy in July 2018 and started Letrozole straight after continuing through 3 weeks' Radiotherapy. At first the side effects weren't too bad but now after 5 months or so I'm getting fatigue, breathlessness and really bad ache and pain across my upper back . It seemslike the bones in my rib cage are aching, especially when walking. Up to now my joints are ok (hopefully will continue to be). Did you experience aching in upper back? I'd just like to know if these are symptoms of side effects before deciding what to do. Hoping you are feeling much better now. My cancer was Stage 1 Primary with no lymph nodes involved.

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

I agree with you Sunflower, that Letrozole reduces the production of Estrogen but if one (who needs to lose weight, i.e., me) can help the Letrozole along by losing weight...why not? Exercise can also help with some of the side effects. My motto is: move, move moveSmiley Happy

xx 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi,

Fat cells do indeed produce estrogen but that is what your Letrozole is there for to stop them doing that so you dont have to worry about weight its just about getting through all the side effects of the letrozole.

 

Sunflower

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Kathyx,

 

I couldn't agree more. I've put myself on a strict diet (I know-the four-letter word that nobody believes in anymore)-but you know what-it works. I've been eating a huge salad for dinner...lettuce, cucumber, carrots, celery, linseeds, flaked almonds, sunflower seeds, beetroot (I love them)! and 4-5 anchovies (I need a bit of salt). For breakfast I eat a small bowl of "no sugar" Alpro (I'm dairy-free) with all the seeds above sprinkled on, as well as blueberries, or on a carb day I have 2 slices of toasted rye bread with smashed avocado. 

 

I can go without lunch (whilst off work) and have nuts as a snack in the afternoon.

 

I have been doing this for about a week now and already feel "lighter"-I live alone and used to eat so much-I *love* carbs, but they weigh me down. I'm 5'2, and was weighing between 135-140 pounds (63.5 KG).

 

I have also been running (I used to run and stopped due to laziness)-I ran over 2 miles on two days this week and again, feel so much better for it. 

 

Exercise and diet are key. 

 

And yes, I have the aches and pains that others have, but I also believe that our pre-Letrozole state determines how well we cope on it. My joints and muscles were pretty healthy before Letrozole so I imagine that my aches and pains are on a lower end of the severity scale compared to some other women.

xxxx

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

The trouble with putting on weight is that fat cells produce more oestrogen as do carbohydrates, whereas eatign most vegetable has a positive effect. I'm glad it works for you but it all sounds contradictory to me, I'm afraid.

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi,

I have just been reading this thread as I too am on Letrozole ( have been for about 9 months now ) and have all the usual side effects, stiff joints, depression, head aches etc but they are not too bad I can live with them but a few months ago I had terrible "gastric" problems and I decided to go back to basics and take them as it says on the packet, i.e. with a large glass of water, I also have a large cup of tea and some plain biscuits after taking them and have a large meal before I take them, I make sure the meal I have before them is very starchy/high in carbs, usually lots of boiled potatoes, with just a very small amount of veg and it seems to have stopped the "gastric" problems, I used to eat a lot of veg but it just does not seem to agree with Letrozole so I may end up putting on a bit of weight but if it makes me comfortable for the next five years its a small price to pay.

Any of you that are having gastric problemst may find it worth  trying this kind of change in diet  before you give up taking them all together and I also think drinking plenty of liquids around the time I take them helps.

Good luck.

 

Hugs

Sunflower

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

I thought I was tough until I went through Chemo and tried the Letrozole. My friend going through it also having a hard time with the inhibitor. She wants to quit but doesn't dare, due to having breast and then ovarian. I wish I had seen the forum about trying magnesium. I do not test low, but you know how their normal in testing might not be our normal individually. Found that out when I knew I was dehydrated and I was told my readings were NORMAL. I had to persist until dr ordered the fluids. What a difference. We know our own bodies. Best to you.
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

That does sound like an extreme reaction and i totally understand why you gave up. I wonder if these professionals would push it so hard if they knew quite how much it messes up our lives.

I have got to week 4 on letrozole and have always been active. I have been told to continue exercise as it helps but it effects me emotionally as well as physically making me cry with the pain. I am thinking i will carry on for now but if it continues at this level after my herceptin finishes in March then i will consider quality of life over the benefits.

Good to know you feel better after coming of it and good luck.
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

I was diagnosed with Stage 2 breast cancer in Dec 2016. No one on either maternal or paternal sides have had it, though my mothers side has had many incidents of cancer. I had missed 1 mammogram when my daughter had a bad incident with Crohns disease and we were trying to save her life. Went through chemo, 4 sessions, mastectomy prior, my chouce, no radiation, no lymph node involvement. Due to being a runner for years, skier, and gymnast through high school; I had some joint pain due to injuries. However, nothing prepared me for the after effects of chemo and trying to take Letrozole. Within 2 wks I could barely move, get up from a sitting position or excercise as I wished. I continued to walk 4-5 miles a day, working with a personal trainer etc; until I fell into the back of our car and could not get up. The next day I quit the Letrozole. Within a short time my joints felt so much better. My Oncologist nor his PA were happy. We tried every other day and half doses to no avail. I no longer take it and prefer Quality in my life. I suggest anyone try what is suggested, but I had to stop. My friends who also have gone through this journey tell me how badly they hurt, but some are not as active as I am, or younger. To each their own. Good luck to those sorting this journey out.
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Super! Thanks Sue.

xxx

Community Champion

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi
Please check with your oncologist before taking any additional supplements. You should only take it if you are low on magnesium, and this needs to be established first with a blood test. Any medication that you are already on, needs to be considered.
Sue xx
Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Jspindley,

 

I, too, have heard Magnesium is good for BC patients but I'm just wondering (though I'll also ask my GP)-as far as you are aware...are there any contra-indications, i.e., high blood presssure, cholesterol, or other health problems that could be made worse by taking Magnesium? 

xxx 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

I have mentioned this so many times and had people thanking me! Just take MAGNESIUM!!! It's amazing. Google it!..I almost stopped taking Letrozole, my whole body ached, I felt like a 90yr old!..it's a muscle relaxant and gives you energy etc! You will thank me, what have you got to lose? I buy Lamberts (who supply to NHS) take one on a morning and one an hour before I go to bed...and remember MOST of us are deficient in this wonderful supplement! I now get mine on prescription (also take your Calcium D3!)

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Thank you Cybele, that's very helpful.

 

What you say supports my experience of Anastrozole, which is of course a sister drug to Letrozole. I was on the latter for only about 3 weeks as I developed a rash which my clinical oncologist identified as being caused by the drug. I was then on Anastrozole for 9 1/2 weeks, by which time I had symptoms including extreme irritability (over nothing), extreme fatigue, muscle and joint pain, extreme depression, complete loss of motivation, nausea and loss of appetite. I was advised to stop taking it and although offered Exemestane, I declined as the medical literature indicates that the adverse effects of Exemestane, very similar to those of Letrozole and Anastrozole, are attributable to oestrogen depletion. After all, the AIs are designed to render our bodies free of oestrogen.

 

The irritability was extremely horrible. I would wake feeling really bad tempered, and would keep looking for something to be bad tempered about. It meant exerting extra cognitive control the whole time and it just wasn't feasible.

 

Tamoxifen, although operating by a different mechanism to the AIs, does not appear to be at all preferable. I've posted details about the pharmacology of Tamoxifen in other threads. (It blocks oestrogen receptor beta which can have a resounding effect on many of our functons, including cognition. It mildly increases oestrogen receptor alpha, but that can prompt uterine bleading and other nasties.)

 

Individuals differ, but it looks as though some of us might be particularly sensitive to reduction in oestrogen, so as these drugs are designed to wipe it out altogether by one method or another, we are between a rock and a hard place.

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Thank you Marla and Cybele. I know everyone is different but it is good to know i am not alone in this. Luckily I do have people around me who understand what i have been through and hopefully will bare with me over the coming months/years.

 

 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi, I'm just going to cut and paste here something I've just written in the Chemo Dec 2012 thread, as it relates to my experience of Letrozole, which I've just stopped taking after 5 years, in case it may be of interest to anybody. 

 

"My treatment news is that I stopped taking Letrozole this summer, after 5 years, although the oncologist

recommended that I take it for another 2 years - a decision I hope I won't come to regret.

But the effect of Letrozole on my quality of life was so severe that i got to the point where I just couldn't bear to take it any longer. The physical side effects - aching joints, fatigue, generally feelinga hundred years

old - gradually dissipated by about year 3, but the mental side effects - which may be summed up in the useful phrase I saw somewhere 'Letrozole rage' - just got worse and worse.

 

For the last couple of years my mind was constantly filled with a cloud of anger just looking for something to land on, and it was horrible. And I was horrible. This led to a number of unfortunate incidents, and it got to the point where I just couldn'ttake being that person any more.

 

It was possible that these symptoms would have come on anyway with the menopause (which began with my first chemo session, after which my periods vanished for ever), but since I stopped taking Letrozole

in the summer, the constant seething rage has gone, which is a huge relief both for me and my poor husband, who bears independent witnessto the fact that I am 'much less explosive'. 

 

I am writing about all this in case there's anyone else out there who is enduring similar problems. I know Letrozole is an excellent cancer drug, but it really is nasty stuff. I might also add that I have lost 1st 4lbs since I stopped taking it. i have been going to the gym regularly and eating a very healthy diet for the whole of the last year, but I only really started to lose weight since i stopped taking the Letrozole in June, and the difference is now striking.

 

I did spend some time studying the medical literature before i stopped taking it, as losing your safety blanket is a very big step. The consensus seems to be that in women with early stage cancers, the protective effect of taking Letrozole for the final 2 years is very small, and one that may well be outweighed by the problems caused by side effects. I still worry, obviously, but this did bring some comfort.

 

And now I feel like me again..."

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Christine! Merry Christmas to you! Yes, I do relate to the low mood and grumpiness-hugely. I can't speak about the Herceptin and Zoladex but re-the Letrozole...for me, it's been worse than what I experienced during my menopause. I am two years post menopause and don't recall feeling this tearful and grumpy with the world. Two weeks may be too soon to feel many of the effects of Letrozole, so I'm inclined to think some of the SE you describe are down to your other meds but I may be wrong. I'm about 11 weeks into Letrozole. I've heard tumeric is very good at stopping cancer from growing and though I'm not taking tablets, I sprinkle it (as a spice) on some of my dishes. My attitude is this: if the Letrozole does the trick I can put up with the mood change...only time will tell. I'm doing everything I can to avoid surgery. I'm 51. Invasive Ductal with Lobular features, Grade 2. 

 

I hope your symptoms ease and hopefully others will share their experiences over the coming days...

xxxx

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi everyone

I am 54 and started Letrozole two weeks ago. I am also on Herceptin and Zoladex. I was expecting the hot flushes but so far they have not appeared but the main problem i have is feeling very low and grumpy and a lack of appetite. It feels like a pmt mood but it doesn't go away. Has anyone else had this problem and if so does it go away afer a time?

 

I did speak to a nutritionist before i started and she has given me a diet plan to reduce acid reflux and stomache problems. I was doing ok until i had two slices of bread and the wind and tummy pains with indigestion were mad. Not sure if I have an intolerance or it is the Letrozole.

 

The muscle and joint pains i have with Herceptin seemed to stay constant but i do have some days where my legs seize up. The nutritionist has suggested turmeric capsules which i think are helping. Shoulders, hands and legs are not great and that doesn't help with the low moods either.

 

Hoping the side effects ease and the mood lifts over Christmas.     

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Margie,

 

Sorry to hear you are struggling with the heat flashes and night sweats. When we had the heatwave in the Summer I slept with an icepack (wrapped in a facecloth/tea towel)-you could try sleeping with an icepack-I used in several ways: either resting it between my legs (just above my knees)-my leg muscles held it in place, *or* on my tummy (if you lie in your back. Just having it beside you, knowing you can reach over and grab it when you have a "flash" may help. I am not suffering much with hot flashes at the moment but this did help me in the Summer. Other options are installing a ceiling fan (I have one) or even having a stand-up fan in the room (I use an air purifier) also helps to keep the toom temp lower. 

 

I hope you start to get some relief at night soon. Poor sleep is awful and we all suffer from it for a # of reasons.  

 

For the day-time flashes, have you tried carrying round with you a hand held battery operated fan? 

 

Sending you lots of cooling thoughts....

xxxx

 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hello everyone,

I have been on Femara for 3 weeks now and I have a real problem with heat flashes, and especially night sweats. I am 65 years and had moderate symptoms of menopause but now I can heardly manage the night sweats which last a good 30 minutes. I have dozens of heat flashes during the day. They announce themselves with a whiff of nausea. I tried cutting out sugar, and am taking Oxygen mineral supplement. Still thinking of acupuncture or reflexology. Bone pain is not a problem. The eyes may be getting weaker. I had an eye test recently before starting Femara - but there was no problem. Has anyone got similar experiences and share experiences how to get to grips with the temperature fluctuations? I am clothing in layers and constantly keep putting on clothes when shivering after a heat flash, just to take off again soon after that.

Regards

Margie

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Gailey-you are fortunate to have an open minded oncologist. Mine is adamant there is no difference and calls this "nocebo"-where patient expectations (that different brands cause different SE's) contribute to negative patient experiences (kind of like self-fulfillikng prophecy). She is adamant, as is my chemist/pharmacist, that all brands share the same active ingredients therefore cannot possibly cause different SE's. 

 

I am not sure what I think. I can see it from both sides. Personally, I've had two different brands so far (I'm 6-8 weeks in) but haven't noticed any significant difference between the two. 

xxx

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

There are many generic brands of Letrozole as well as the original Femara which is more expensive than the generic versions. So most GPS will give you the generic version which may vary each time depending what brand comes from the supplier.

Last year I worked my way through all brands trying to determine what side effects I got with each but logically each brand you need to try for at least 3 months to determine if the side effects settle. I had joint pains and muscl aches on all some better than others and the best was Femara which I have been on now for nearly a year. In order for my GP to prescribe Femara she had to get approval from the Local Medicine <anagement committee (due to expense) she was only happy to do that as I had done so much research and trial and error with all the brands. One brand caused such joint pain after only a week of taking it so I crawled upstairs. I even paid for a private prescription for Femara to prove to myself there was a difference.

All I can say is stick with the Letrozole and document the brands you try and the side effects and then have a discussion with your GP. My Oncoloigist also advised that what I did was appropriate and agreed that side effects varied with the brand.

Good luck, persevere as we could all be on this for 10years!1

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Replying to Jo. Hi, I have just registered with this Forum and saw your post regarding gastric problems with Letrozole. I started on it after Lumpectomy on 10th August this year and was given the Cipla brand which I settled down to with no side effects. However when I picked up my last prescription on 3rd December I discovered it was Accord brand. The Pharmacist would not change them so I have been taking them since resulting in constipation, extremely bad painful wind and ache along the lower abdomen as well as night sweats . I have today requested that my GP stipulates on my prescription that I require Cipla. I shall report back when I eventually get them and hopefully get rid of these side effects. I would be interested to hear what anyone else thinks about the various different brands of Letrozole. Fran

Member

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

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

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

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

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

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

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

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

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

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

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

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

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

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Annie

Thank you for your concerns. . My surgeon wants to see me again this Friday to discuss  the bone scan.  I am thinking of agreeing to it (once again).

Paulus mentioned self prescribing, and I agree with her that I would not be too happy with any side effect which cripples me. 

Everyone on this forum has their own problems to contend with, yet  they have written kind words of support and advice.  

Best wishes to you all. 

Community Champion

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

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

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

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

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Do any of you take vitamin D and calcium tabs to combat bone thinning from Letrozole?
Member

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

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

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.

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Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Flora,

Your comments have been taken on board, but again unfortunately a Macmillan service was not offered so I am really on my own with this.  

My surgeon offered a bone scan to see if the cancer had spread to my hips as I had pain (from osteo-arthritis). I agreed to it, but when the appointment arrived,  it was a 3 to 4 hour wait between the injection and the scan which could take up to an hour lying still without moving. 

No contact to be made with another lady to pass the time to talk to  in case she was pregnant or had a small child in tow, as I could be giving out radioactive something or others.  I didn't like the sound of all that, so after discussing it with my BCN,  I asked her to cancel it, and she agreed immediately as she had that scan herself and knew what it entailed.

I will try it later as the surgeon can reinstate it.

Best wishes  to everyone.  

 

 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Hi Appletree,

 

I agree with everything you said, specifically re-biological depression and the possible effects that estrogen depletion/endorcrine therapies may have on these particular individuals. I also agree with what you said re-women who have predisposing hormonal imbalances. It shouldn't be a "one size fits all" approach with these meds, but sadly it is. I'm also really pleased to hear that you had a clinician who was able to advocate on your behalf.

 

Side effects, indeed, need to be taken seriously, and I also agree that quality of life is important.

 

We all have to make decisions that we feel are best for *us*, and I ditto your final sentence-we will all die someday.

xx

 

 

 

 

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Marla, I am sure you are correct that there are many factors to consider when explaining side effects different women experience with individual AIs and with Tamoxifen.

 

Not only does smoking and obesity (as opposed to mild over-weight) contribute to a range of health issues, but other cancer treatments can cause long-term problems. There is evidence that women who have had chemo involving taxanes are more likely to get more severe joint and muscle pains with endocrine therapies than women who have had no chemo. (I'm not suggesting people should avoid chemo for that reason. )

 

There is also the question of how oestrogen depletion affects individual women. As all endocine therapies are designed to block oestrogen by some means, this is something to take into account, along with possible long-term effects of oestrogen depletion on the body as a whole, including the brain. Again, different women are likely to have different medical profiles. A specialised nurse on the Breast Cancer Care site told me that most women who have a history of depression find they have to come off endocrine therapies. I'm referring to severe depression of a biochemical nature, and not the general distress of having cancer or dissatisfaction with everyday life.

 

Having been on Anastrozole for 9 1/2 weeks, and having eperienced a gradual increase of the severity of a range of side effects to a debilitating level, I stopped taking it. My BCN referred me to a clinician in the local Breast Clinic. The doctor, who had specialised in cancer treatments for 20 years, took my concerns seriously, especially as I have a long history of problems with hormonal imbalance: PMT as a young woman, the menopause, HRT, coming off HRT (I was ill in bed for a week) and then having to cope with the menopause difficulties without any assistance, which took some time.

 

The clinician wrote a very helpful letter to my Consultant Oncologist (I wasn't due to see him, or more likely his registrar, until the end of January), asking him to give me an appointment to see him personally within the next few weeks, with a specialised pharmacist present.

 

The clinician was disarmingly honest, said she knew very little pharmacology herself as she left it to the pharmacists in the cancer hospital, and that I needed specialised advice which she couldn't give. She also obsered cheerfully that very few doctors know much pharmacology and, as every patient is different, the approach is to prescribe one drug, and if that causes problems to try another, until a medication is found which the patient can tolerate. She observed, with a big smile, that the knowledge held by the medical profession is very limited in comparison to what is unknown.

 

Another problem is that pharmaceutical companies, on whom research depends, focus their research on the benefits of their products, and do not explore the adverse effects. So, adverse effects are picked up on and listed by a gradual process during trials and through the yellow card scheme. I have been told this by a consultant pharmacologist whose research is funded entirely by pharmaceutical firms. New drugs, once licensed, are strongly promoted by their manufacturers as the research is very expensive and the pharmaceutical industry needs to recoup the money they've spent, promptly. 

 

Before trying another endocrine therapy, I shall be weighing up very carefully the possible benefits against the probable problems, especially those that are likely to be long term, taking into account my medical history. Quality of life is extremely important to me. There is no point in making myself ill to the point of being dependent on other people, simply to extend life by a few years.

 

The reality is we all have to die some day.

Member

Re: LETROZOLE SIDE EFFECTS; PLEASE HELP

Just to add: I think that whether a woman experiences some of the side effects (i.e., joint pain) may also depend on their pre-Letrozole health, and mobility, etc. For example, I have osteoporosis in my family, though I haven't yet had the bone density scan (my oncologist is not in a hurry to scan meSmiley Happy), and so I don't know if I have osteoporosis, *but* I have always been relatively "supple", and flexible, in good physical shape, and my BMI is at the high end of normal (I love a potatoe)!. So I'm not obese, I *am* in the normal weight range, but high end of normal, and just wonder whether joint pain is related to BMI or weight? I'm only putting this out there because my mother has severe joint pain, bursitis, is awaiting a double hip operation (both hips) and is overweight. Her weight and pain make it hard for her to mobilize. And so I see what weight can do to one's overall health. It's just a thought. My main point is that I think it's really important we consider *all* possible factors in what might be contributing to a particular side effect, before concluding it's the Letrozole.