Letrozole v quality of life

Hi Tom Thumb  I decided to take letrozole and have been on this for over a year now. For me the side effects are minimal, occasional stiffness in my knees but as long as I exercise (walking) regularly, this pain goes away and to be honest, it has never been bad enough that I have needed painkillers.   I hope you din't mind me offering this alternative view, but sometimes I think we only hear about the negative experiences and not the positive. Best wishes to you and your partner 

Hi Tom Thumb 

I agree with Irishgirl16. I began taking Letrozole in May for first few weeks joint pain becoming worse in evening. I am now 7 months along and only get a little stiff if sitting for awhile when I stand up but goes off quickly. I am taking Sun Pharma brand and under stand changes in brand can affect side effects. As mine weren't too bad I have stuck with this brand and my prescription states I have to have it. Pharmacy can order it in. I take mine last think at night. I do feel there is a reason why they ask you to take these meds. We all react differently and have different views re medication. It may be worth trying it for a couple of months to see as you can always stop it. I also take Ibrandronic Acid which is to strengthen your bones and stop cancer forming this can be given as an infusion but I preferred tabs as could stop if side effects presented.

I guess we do what feels right for us my cancer was Grade 2 so higher grade but I feel I can say I have hit it with all I can. 

Good luck xx

Hi TomThumb

i have the same thoughts as Irishgirl and Janenb.

I also have been on Letrozole for 4 months now . To begin with I had nausea in the morning and other side effects which are easing off as time go by.
I also need to take a daily ibandronic acid tablet. I did a lot of research before I started both these medications including asking my brother who lives and works in the US . He has been in the pharmaceutical business for over 40 years and although not in the Cancer field he has a lot of associates who specialise in cancer treatment. The information he fed back to me convinced me that I need to take it to give me the best chance of the cancer not returning. I am 70 years old by the way and lead quite an active life . Walking, looking after grandchildren , gardening etc. I hope to return to full activity levels in the next few months . My surgery was in July followed by 5 sessions of radiotherapy in September.  My cancer was stage 2 ER+ And PR+ HER neg and also had to have ancillary lymph node clearance ( 15 removed in total ) as cancer was in the first lymph node. No further evidence of spread. 
I understand that your partner is worried by all the info re medication but when we read every medication leaflet there are numerous side effects that most of us do not get . 
As Irishgirl states we tend to mainly get the negative stories. 
I hope you find this useful and your partner comes to a decision she is happy and comfortable with . 
Take care and the best of wishes to your partner .

NannaJ 

Hi, I’ve been taking letrozole for 7 months and tolerating it well now. My oncologist was brutally honest and told me I really must stay on an aromatase inhibitor like letrozole for 10 years to give myself the best chance to avoid reoccurrence.  hopefully your partner’s oncologist has also shared her risk / benefit statistics so she’s able to make a truly informed choice about her treatment. 

Personally, I wouldn’t be willing to try any anti-cancer therapy that hadn’t been subjected to scientific rigour through clinical trials. So i don’t believe that complementary therapies have a role in replacing treatments like letrozole. I’d also always check with my oncologist before initiating any alternative treatments. 

Best wishes to you both. 

Hi Tom Thumb, like others have suggested, I would think very carefully about deciding not to take Letrozole (or other aromatase inhibitor). I started mine immediately after surgery rather than after radiotherapy. Halfway through radio, the radio-oncologist asked me how I was getting on with it. I was ok as it happens. She was quite firm in saying that I must continue with it, because for me, it was better than chemo (I was oestrogen and progesterone positive). I didn’t realise why this was, until I found out (through the media) that they now know that oestrogen positive breast cancer can return many years down the line, and this medication can be very helpful in this regard. I later developed ankle aches and stiffness if I got up from a chair, but that has improved and soon subsides nowadays (I’ve been on it 14 months). Even without the improvement I would still have continued with it (I am 61) as it does not stop me from doing anything I want to do. It has emerged from long-term trial data that exercise can also considerably help to prevent a recurrence of breast cancer and Anastrazole (the one I am on) does not prevent me from doing 45-60 minutes of that nearly everyday. Admittedly I am now addicted to going out for a very brisk walk as it helps my mental health and gives me some ‘me time’!! As someone else has said, the forums can be skewed, in that people rarely come on and say .. “Hey, I’ve been taking letrozole and it’s been a breeze! What about everyone else?!!” People tend to visit the forum for support or to give support. That’s not to say that there are no positive posts …. Because there are. But there are fewer of them. 

Hi Tom Thumb , I’m on Anastrozole, like Cloudier , which is similar to letrozole. I took everything offered (op, anastrozole, radiotherapy) because I want to do all I can to prevent recurrence. But I also do other things which have been shown through scientific studies to help prevent recurrence: exercise, which also helps with joint pain and fatigue; I didn’t drink much anyway but now not at all - there’s no ‘safe’ amount for oestrogen positive breast cancer; I fast for 13 hours overnight - a study showed that those who did this had a significantly lower incidence of recurrence; I reformed my diet, mainly reducing processed food and increasing fruits and veg. There’s info around re all of this - I went to a dietitian session at Future Dreams in Kings Cross, worth a Google and they also do online stuff. The Penny Brohn Centre in Bristol is also a great place, haven’t been there as I’m nowhere near but have done an online webinar about mistletoe - very interesting but not for me atm. I might look at it when I eventually come off Anastrozole, it’ll be 5 years next December and although I’m keen to do a further 2 years I’ll have to discuss at the breast clinic. 
Hope you can find lots of info for your partner so that she can feel she’s making an informed choice, whatever she decides. I’m a similar age (63) and my passion is walking. Although I do get joint pain and fatigue which I’m sure is from the Anastrozole, I haven’t stopped walking and now include Nordic walking and gym workouts! It all helps, I find. Love and hugs to you both, HFxx 

Hi HappyFeet1, thanks so much for that advice. I have read about the role of alcohol in the recurrence of Oestrogen receptive breast cancer, but had forgotten about it. Like you, I didn’t drink much anyway, but now it’s zero, whatever the occasion. Although I don’t eat late, I wasn’t aware of the 13 hour night fasting thing. I’ve just googled it, and yep … it’s out there. The many longitudinal studies on the role of exercise is well documented, as you say. I guess that these lifestyle options are useful for helping to prevent other conditions too, so they are worth trying anyway, especially as we get older. Re: your 5 year mark, I understand your planned discussions. I am scheduled to be on it for ten years. Thanks again, xx

Hi Tom Thumb I was advised to take aromatase inhibitors, having had a lumpectomy and 5 days radiotherapy.  Initially I took Anastrazole, this gave me dried out nose, mouth, eyes.  I then took Exemestane which gave me weakness in my legs to the extent I would think twice or three times before standing up.  I looked at the NHS Predict breast cancer tool and found that in my case the drugs would only give me an additional 3% chance of survival.  I would recommend looking at this.  Following discussion with my family and friends I decided to not take aromatase inhibitors.  Having had breast cancer and all that this involves I wanted to live my life to the full.  I hope this helps.

Hello,  I had been on Anastrazole for about 6 months and doing pretty well except for dry mouth at night and thinning hair.  Had DCIS right breast and stage 1 in the left and both 100% ER snd PR positive so aromatase inhibitors were part of treatment.  ER positive tumors are a real challenge as breast cancer can come 15-20 or more years later.  72% of all cancers are ER positive and I am glad to see more research being done on the estrogen receptors rather than just shutting down our estrogen.  Anyway had to stop Anastrazole for a few weeks as was very very itchy.  Don’t know what will be recommended now.  I am so disappointed but seems there is always something else ahead.  
Take care

Barbara

Hi Barbara, thank you for mentioning this new(?) research. If / when you have the time, please could you signpost how to read about it? Thanks so much, and wishing you well. X