I’ve been reading on here how many of you are affected by the astounding range of side effects of AI’s but you persevere for months and years.
I’ve done 2 months of Letrozole and the side effects were horrible. Joint pains (well total body pain really) sleep disturbances and feeling like I would rather die than live like this any longer. I had 2 weeks off and then started Anastrozole. The joint pains never really got better but they are just as bad as before.
Reading how you all persevere is making me wonder if I’m giving up too soon. Is there any hope that these symptoms will improve if I can just grit my teeth? I’m desperate to get back to work for some kind of normality and also financially so I keep panicking that time is against me. My chances of recurrence increase by 11% without hormone therapy. There’s a big difference between 60% and 49%.
I’m 50 and struggling to make sense of it all. Sorry to blurt it all out but I feel very alone
I’m so sorry you’re experiencing these side effects.
I was on a stronger drug along with letrazole which had quite significant side effects, but luckily for me I don’t really have many from letrazole.
I take mine in the evening. Have you tried that?
Also, have you tried switching brands? I had joint stiffness and hot flushes with one brand of letrazole and was scared to switch as it wasn’t too bad but now I am on a different brand the side effects actually seem less.
Lastly, I think evening primrose oil is meant to help with hot flushes and I think there are supplements that may help with joint stiffness so (with apologies) I can’t remember what they might be. I was taking quite a few vitamins at first (calcium supplements, vitamin d I think).
I’m higher risk than you by the sounds of things so I don’t see quitting the drugs as an option.
I’m 44. Do you have the option of tamoxifen? Are you taking anything to suppress your ovaries? I was having zoladex injections which I found worse than the letrazole but I don’t need that now and I’ve had my ovaries removed.
Hi @louies-mum, I’ve been on Letrozole for almost 3 years (this coming February). I am 46, 43 when I was diagnosed. I have tried different brands, different time of day but the pain in my knees is horrendous. Though, saying that I had steroid injections a couple of weeks ago and it’s still early days but they seem to work🤞🏻- knock on wood!!!
I did try everything - very strong painkillers, acupuncture but as I had a very advanced and invasive Lobular breast cancer (stage 3, with 3 positive nodes) I don’t really have much choice but to continue. The risk of recurrence is quite high in my case - my tumor was very big - 12.5cm. My oncologist wants me to stay on Letrozole for another 5 years so yeah…I am also having Prostap injections every 3 months…I never thought of swapping with another AI as they are the same kind of medicine. Tamoxifen is an option but I had very heavy periods and there is a possibility of thickening of the lining of the womb and uterine cancer. My mum and older sister both, had hysterectomies in their 40s so not really an option for me. AI also have better outcome in my case. I’ve also been on Abemaciclib for two years and it was the combo of both Abemaciclib and Letrozole that was rather important so yeah…it seems that oestrogen blockers are quite important especially, in my case mine was ER8 PR8 so yes, I need to stick with it…
And so sorry to hear about your side effects . I know several people who started off on Letrozole and didn’t tolerate it well due to joint pains and stiffness - they were all changed onto Exemestane and all seem to be doing much better on that and have been taking it in some cases for years. Two weeks doesn’t sound like a long enough break to me to get the Letrozole out of your system before you started Anastrozole so it’s probably difficult at the stage you’re at to work out whether or not it’s any better on Anastrozole. I’m not surprised you are feeling so alone and scared. I don’t know how long you have been on Anastrozole - my first few weeks on it were pretty grim but some of the side effects did settle down a bit after 3 months though not the joint pains and stiffness unfortunately.
Someone I work with was changed onto Tamoxifen and she is doing ok on that . I was initially prescribed Tamoxifen but my medical history meant that it was unsuitable for me but it might be an option for you.
Some people do seem to benefit from changing brands and it might be a good idea to write down the name or photograph the packet and go to your Pharmacy and ask if there’s a different brand available . They may tell you that they’re all the same but our BCNs have advised people to try this and to try a different Pharmacy if they can only get one brand .
Please don’t berate yourself for not being able to tolerate the side effects . Is there a local support group that you could join that would help you feel less isolated ? Two other organizations people have been helped by are I have heard mentioned a lot are Maggie’s Centres and Penny Brohn.
Not everyone has side effects and for those that do they aren’t always as severe as what you are experiencing .There are plenty of us on here who do understand and some of us have not tolerated the side effects either . Each case is individual and in your position I would be trying to live with the side effects a d find ways to manage or minimize them . However from the outset my breast consultant said that if I didn’t get on with hormone therapy it would be reasonable for me to stop because my risk was so low - and I did stop after 5 months . I’ve had moments even then wondering if it was the right thing to do especially in the first few months after but less so now and I’ve been off it for so long that it’s too late to restart .
One thing that I did find helpful when I was still taking Anastrozole was Somatic Yoga . I had not tried this before - it’s very different to normal Yoga ( which I still do ) . It was all done lying on the floor in a warm room using a combination of breathing plus gentle repeating movements and relaxation to release tension in muscles and joints . The lady who ran it was a Yoga teacher who was recovering breast cancer herself and was running the class for other ladies in the same position. - unfortunately it was only once a month and has stopped now . The effect for me was similar to having had a really good deep massage and everything was moving more easily for several days afterwards .
Once settled on the hormone treatment, I’m supposed to start Abemaciclib. But I can’t seem to get “settled”. I have been advised to try Tamoxifen by my Oncologist if Anastrazole is intolerable. I have been on Anastrozole only 10 days at this point. Tried to talk to pharmacy about brands before I gave up on Letrozole but they were not willing to help me. I can’t face the fight every month to get a certain brand. I really wanted the Novartis original drug but that won’t be prescribed due to cost. My grade 3 cancer was quite big and strongly ER and PR positive with nodes involved.
I’m due to run out of sick pay soon and all of this takes a long time. I’m trying to keep perspective but there’s no way I can hold down a job whilst the joint pains and fatigue are so awful.
I’m going to try supplements from today. Just waiting for delivery of high strength evening primrose and magnesium. I’m walking every day.
Magnesium is good for joint pain / stiffness and might help with sleep especially if you take it at night . It might be worth speaking to MacMillan who are good for advice around employment and benefits .
Well the one thing you are not is ALONE. There are thousands of us out there who simply cannot tolerate these drugs. Cannot is a strong word which I suppose should be Will Not but the effect on life is the same. Mine became intolerable, the side effects were so overwhelming I decided that I would rather have a few good years and risk the return of cancer than live for years at only half horsepower. However, I am older than you and that is very much my personality. Gobbling pain killers lying on the sofa embracing my fogged up mind was just not me - even if they promised 100 more years. What swung it for me in the end is that these drugs are really not very effective in doing anything other than give patients a reduced quality of life. I was told Letrozole could increase my defences by ‘up to 3%’ and I nearly fell of my chair. Make it 60% and I might consider it. For me it was a no-brainer but I do urge you to try the alternatives first which others report success with. Best of luck.
Hi @teddy271 I don’t agree that AI are not very effective at all!! Of course everyone is different and it’s a personal choice but is the only thing that keeps away the cancer at the moment for me. I’ve got two young children and I am doing everything possible to be with them as long as I can. Some of us don’t have the choice of not taking drugs… it’s a really scary to think every single day - is the cancer coming back?
I completely understand your point of view and even as I disparage these drugs I ALWAYS advise others to give them a try. You are clearly much younger than me and in your circumstances I would probably take every pill and potion on offer and grab any medication that offered protection.
However I stand by my statement that these drugs are not especially effective. They are just sold as the answer because, at present, they are all we have. Most studies show that taking one of these drugs can give you between 2-3% increased protection against cancer recurrence compared to patients not taking these treatments. By any standard this is a low efficacy rate but I think women are too often not told the truth before they enter the decision making process. Certainly, oncologists are often guilty of pressuring women to take any and everything on offer. Their job, after all, is to keep us alive.
My decision to discontinue was an informed one based on my age, lifestyle and stage/grade of my cancer. It was the right decision for me as it has allowed me to more or less return to a pretty hectic and enjoyable life rather than crawling around the house because of painful joints and existing on a diet of daytime television because of lethargy and tiredness. If cancer returns I will deal with it but at least I will have had several years of relatively normal life. I can only hope that one of these days they develop some new drugs that don’t rely on reducing patients to a shadow of their pre-cancer selves.
Hi all you ladies suffering with joint pains on AI’s. I took arimidex for 5 years and had a lot of small joint pain/stiffness in my hands and feet. I found Co-enzyme Q10 worked wonders. I always knew if I had forgotten it for a day. It is a vitamin-type supplement, readily available in supermarkets, and as far as I know doesn’t interact with other things… I took it for about a week I think, before the effect kicked in. I know it sounds trite with what you are all going through, but it might just help somebody out there. By the way, after 5 years I switched to tamoxifen(because of osteoporosis risk) and it was MUCH easier to tolerate
The hormone treatment adds 11% onto my 10 year survival data so I feel I have to really try to tolerate them. I think I’m going to give the Tamoxifen a go. I would cross my fingers but they are too painful!
It’s not the return of breast cancer that is the issue it’s the fear of progression to other organs which is what happens way more often and means it’s incurable and will kill you . That’s why we persevere with AIs.
Today I walked 11500 steps I have no joint pain my bone scan a few months ago was normal after five years on Letrozole . I’m on it another 5. My quality of life is fine . I am 67 . As to them not being effective mortality rates have halved in the last 40 years . And that’s not down to yoga and green tea as delightful as they are
@teddy271 I totally understand if you don’t want to take it but please, please don’t say that they are not effective! As @Susanmanchester rightly said we are not all able not to take them…I’ve been through 6 months of gruelling chemo, 15 radiotherapy sessions and 2 years of Abemaciclib and Letrozole (you can read about this combo of drugs) and am now only on Letrozole - what else is keeping the cancer away. In the 90s the practice was removing your ovaries and now is an ovarian supresion with drugs. Nothing has changed in how oestrogen positive cancer has been treated - no oestrogen in the body!! Letrozole also stops the production of oestrogen from the adrenal gland so it’s literally better than removing your ovaries as you still have some that circulating around your body…and if you see the paper in the Lancet about how the combination of Abemaciclib and Letrozole increases your chance from the 5 year monarchE trial you will see the difference this combo of drugs makes to people. I am 46, 43 when diagnosed with very advanced and invasive Lobular breast cancer. I had a mastectomy and full lymph node clearance with 3/34 positive nodes. I don’t have the luxury not to take drugs. My daughter is in her second year of uni and my son is in year 11.
You are definitely not alone, I have been on Letrozole for nearly 4 years now and the side effects appeared to be much worse at the outset and then started to settle down over time. Others on here have already noted that brand definitely can make a difference, but I also found that the muscle aches I was suffering from and put down to Letrozole may have been down to very low Vitamin D so maybe worth exploring with your Oncology team or GP to rule out anything else that may cause the same type of side effects. I was also on the Moving Forward course and was advised that magnesium and Zinc vitamins might help with muscle aches and I found after starting with a low dose of those types of vitamins that it did seem to make it easier. Hope you find something that works for you, take care
I have gone onto Tamoxifen due to bone issues. Was on Anastrozole previously.
Hate how it makes me feel and i did have a months break but even though im considered low risk my surgeon is very keen that i continue. So ive made some changes to my busy life to allow more rest breaks. I go to bed very early and am always tired but im here.
I think your decision is one that you needed to make. Its such a personal thing.
