Letrozole

Hi 7169

I started off on letrozole and then changed to anastrozole after a year. Although my cancer isn’t breast cancer, I have a sarcoma in my lungs, but my cancer is estrogen dependent and  reacts the same as breast cancer so I am on the same treatment. My cancer is inoperable, so I have had some radiotherapy, but the hormone treatment has made the tumours not treated by radiotherapy shrink and  is keeping my cancer stable. 

Letrozole can make your joints very painful. I find that if I am up and about and moving around, my joints are not too bad. It’s once I’ve stopped and sat down for the evening, that’s when my joints are the worst. Some people have found that trying different brands of letrozole can help with the side effects. It seems to be the fillers in the tablets that cause the problem, more than the medication itself. 

You are going through so much at the moment, worrying about the op delay, I am not surprised you find yourself tearful at times. But that can also be the because of the hormone changes in your body due to the letrozole. I think you need to listen to your body. If it’s telling you to rest, then do so. Just take each day one day at a time, you will get there. 

Wishing you all the very best 

Hi 7169

A very warm welcome to the online community, though sorry you find yourself here. 

I'm not on Letrozole but I wanted to say Hi as I see your post got a little lost in amongst everything else. As you can see we are a  large and busy group and sometimes things move pretty fast. We are a very friendly bunch though and ready to give you support in any way you like. We have some long-running general chat threads where you can get a little distraction, let off some steam - whatever you need, and of course you're welcome to reply to posts and create your own as much as you want. Have a look around and just join in wherever you feel comfortable. If you need a hand with anything you can always shout and we'll pop along and help.

As chellesimo says, I think it's quite natural to feel tearful after all you are going through and especially with the uncertainty of things at the moment. Likewise the tiredness, worry is exhausting.

I can vouch for the idea of switching brands, too. I am on Tamoxifen and I definitely find some brands easier than others. My pharmacist is very accommodating and brings me the packets to look at to remember which ones are OK. If you find  brand that is better then your GP can specify it on your prescription and the pharmacist will try to get it for you. I know it sounds ridiculous that a different brand of the same thing would have a different effect on your body, but there are so many of us that find that to be the case that I think it must be true. 

I hope that your side effects soon start to get under control - hopefully some others will come along soon with some advice. Sending you some virtual hugs for now!

R

Hello, thank you for your reply, I am sorry to hear your cancer is inoperable.  It is reassuring to learn that all these aches and pains are normal. I have an appointment tomorrow with the consultant so will find out more information then I hope. I will keep it in mind for the different brands of tablets, thank you.

All the best to you.

Hello ronstar, thank you for your reply I am going to definitely keep a note of the brands of my tablets,  the new ones I have just picked up are different so I will soon be able to see. 

7169

Hi I was put on letrozole because of delay in surgery, how are you getting on with you treatment xx

Hi I have been on Letrozole for about4 months following a mastectomy. I feel I have tolerated it well. In the early days I had a few hot flushes but these have now subsided. Initially I had joint pain particularly in my knees at night but again that has not been so bad recently. I do feel very fatigued and find I have to pace my self and I can’t do so much as I used to without a little lie down! I hope you are not to badly effected and your other treatment is soon. 

Hello Shaz52, it's interesting that you were also put on the Letrozole because of the delay in surgery. How long have you had to wait? I was diagnosed on 28th January and started taking the tablets the next day, so it's getting on for 6 months now.  I had my surgery on May 5th and followed up with radiotherapy starting the middle of June. At the beginning with the Letrozole I was quite bad, I kept crying, felt really tired and had aches and pains everywhere, these all seemed to ease up over the months.  I have found that after having the radiotherapy the tears came back again for a while, I do wonder if that is not just delayed shock when you find yourself with less hospital appointments and time to think about the previous months. In the second week after radiotherapy I had bad exhaustion and just had to go to bed but that all seems to be going now. I think that how I am at the moment is how I am going to be for the next 5 years with the Letrozole, I find I can do things in the morning but come the afternoon I am really tired and have to have a rest, it's a small price to pay for the good the tablets are doing, but it does get me down sometimes.. I will be interested to hear how you are feeling.

Take care.

Hi I have been on mine for a month now, I find I get tired in the afternoon. Your delay was longer than mine. My delay was not quite 3 months. It was so they could do an mri to check for sizing and position for surgery. I have 2 areas, one area of dcis small and a small area of invasive. My mri showed no further problems and no difference in sizing so I can have my theraputic mammoplasty. So hard mentally waiting, but hoping meds did there job, I believe my lymph nodes was okay on mri. My surgery is on 3rd August. What was your diagnosis pls xx

Hello, my diagnosis sounds much like yours, it was grade 2 invasive ductal cancer plus high grade DCIS. When they came to do the operation the invasive cancer had shrunk by 5mm with the letrozole.  I had breast conserving surgery,  wide local excision.  I had one lymph node removed for testing.  All the margins were clear and the lymph node.  I am very lucky that it was found by chance and found early.  What is involved with a therapeutic mammoplasty, I dont know anything about that procedure. 

Hi a theraputic mammoplasty is where they remove the cancer and do a breast reduction at the same time. They are also making my other breast asymmetrical at the same time. How amazing the letrozole shrunk it by that much. My areas are small I am guessing they want to keep them small so I can have this surgery  so on letrozole   The areas are not close to they are just over 5cm apart. I have large breasts so advised can have this surgery. I cannot feel my lump, I had nipple discharge, which was caused by my dcis area, then on my mammogram saw my invasive. If I had not had my nipple discharge I would be non the wiser my invasive was there xx