LETROZOLE

[Bunny286]

Hi had mastectomy 10 months ago on right breast with no reconstruction which was best for me and I felt great after it until I started Letrozole! It is ruining my life with all the side effects the worse being every single joint pains especially my knees I’m taking anti inflammatory tablets and pain killers! Don’t know how I’m going to get through the next 4 years! 😩

[Jillwithers]

Hi there, I am so sorry that you are having so much pain. I found that as time went on, the pain decreased. Have you considered massage, or accupunture. Also medical marijuana. Good luck! Ì so hope you can get relief!

[AnnieAppleseed in reply to Jillwithers]

Good suggestions.

[Bunny286 in reply to Jillwithers]

Thank you so much x

[AnnieAppleseed]

Hi Bunny, I too had no reconstruction (that was long ago). I created an evidence-based Handout on simple natural strategies to reduce treatment toxicities. annieappleseedproject.org/w...

[Bunny286 in reply to AnnieAppleseed]

Thank you so much x

[Burningrock]

Have you talked to your oncologist? Maybe a change in medication? I’m on Anastrazole and have joint pain in my knees, which has actually improved over time. Hard to do a lunge though. I try to stay as active as possible with exercising. I do believe that helps both the discomfort ( and my attitude 😊).

[Bunny286 in reply to Burningrock]

Thank you and yes I must do more exercise!!

[4EverMe]

Hi, i also had a mastectomy back in October 2021, no reconstruction and i am on Anastrozole and had heavy legs to start with, but am ok now. Maybe ask for a different medication if you can.Good luck x

[Bunny286 in reply to 4EverMe]

Thank you so much x

[Cu4281]

I also was on tamoxifen then to letrozole. I was only on that for 3 months and I hated the side affects. You can ask for different meds as there are several and maybe another one will work better for you. I have been on exemestane which is a generic aromasin. It does give me some of the same side affects but is much easier for me. No way I could have done letrozole for the remaining time. Good Luck - you can find something that will be more tolerable. Also - try some of the supplements like fish oil, flax seed oil, glucosamine, vitamin D, calcium, turmeric to ease some symptoms.

[Bunny286 in reply to Cu4281]

Thank you so much x

[KathrynA]

Hi! I am sorry you are suffering so much from the side effects of Letrozole. Just when you think you have lived through all the treatment hell that is chemo and radiation. I had a mastectomy, chemo, radiation and DIEP reconstructive surgery. I have been taking Letrozole for almost 2 1/2 years now. My joints were really sore forthe first 6 months or so but either I got used to it or exercising every day (walking at least an hour a day, physio shoulder exercises, squats, lunges, planks, light weights) seemed to help. I also hate that it has made my already thin fine hair even thinner. But the way I look at it, this is the price for staying alive for these past almost be 2 1/2 years. I got to see my daughter get married and might even be able to meet my future grandchildren!

[Bunny286 in reply to KathrynA]

Thank you so much and yes you will meet your grandchildren x

[Cu4281 in reply to Bunny286]

Good Luck 🍀

[Lucky4]

Hi Bunny,

Background: I tend to be sensitive to most meds. I had a lumpectomy, etc. and started Letrozole. The side effects were/are terrible. I was dragging my leg, severe joint pain, depression, super cranky, all buzzed up and essentially bed-ridden. I have many underlying issues such as a severe auto-immune disorder which makes trying the other meds pretty high risk as well. Spoke to oncologist and ultimately I was taking it every third day and now just stopped taking it. I have such a constellation of severe illnesses (as I'm sure many people have) that the thought of my maybe last few years almost entirely in bed is just too great a loss of quality of life.

I have an appointment the beginning of March and will talk to my oncologist again but the other options have many downsides for me.

I wish you well. For me, the side effects got worse over time. However, from a FB group I read so many different experiences. And, I do an hour of easy Pilates twice a week (which I can now barely do), physio and massage.

Hope things get better for you.

[Bunny286 in reply to Lucky4]

Thank you so much x

[NPmary]

Definitely ask about switching to a different aromatherapy inhibitor.

[Bunny286 in reply to NPmary]

Ok thanks

[Hyro]

Hi Bunny. I am sorry you are having so many side effects. I as well has a mastectomy 8 months ago. I was put on Anastrozole. There are side effects but not to bad so far. I know others have suggested a change in medication. I would definitely consider it. Although there are still side effects, it is manageable. They have put me on it for 5 years as well. I wish you the best of luck, less pain and much health.

[Bunny286 in reply to Hyro]

Hi thank you so much x

[23penny]

Hi All. I’m presently about to switch from letrozole to anastrozole. I’ve tried all 3 but remember being the most active with the anastrozole. I think I stopped taking it due to migraines.

[Bunny286 in reply to 23penny]

Hi 23 penny please let me know how you get on with the change over good luck

[23penny]

Thank you! I will!

[Jg1960]

Hi Bunny, I had a bilateral mastectomy a year and a half ago. Because of the pandemic we decided that I would start on letrozole before surgery. I was on it for 6 months and did not have any side effects. I restarted it a month after completing chemo. Took it for 4 months and developed knee pain, which I had not suffered from previously, and an dull ache in my left femur. My oncologist had me take a break from letrozole to see if that was what was causing the pain, it was. I was off it for a couple of weeks and the pain went away. I also realized that my hands had become stiff and sore, which I attributed to humidity, but the stiffness went away off the letrozole. My oncologist suggested switching to a different AI, but when I researched the side effects on the other drugs they were the same or more as the letrozole. I restarted letrozole because it seems the choices for treatment were a bad choice and a worse one....very disheartening given how much research has been done on cancer treatment but apparently nothing on quality of life after active treatment. I chose to stay with letrozole because I knew what to expect. I took letrozole for another 6 months and knees, femur and hands bothered me so I decided to try a new drug, exemestane. I took a 3 week break between the drugs, the symptoms went away mostly, and have been on exemestane for a couple of weeks now. Still have the same issues, but they are not worse.

This has been my experience, and it is true that everyone has a different experience. You may benefit from changing to a different AI. My oncologist told me that I could always go back on letrozole if things were worse on exemestane. Some folks say things get better with time and some say exercise helps. I do a weekly yoga class, a weekly exercise class and ride my bike. Yoga does help - the stretching is good, and it does increase flexibility. The exercise class focuses on strength training, which I feel is important. I was hoping the cycling would make my knees feel better, it does not, but had not made them worse.

My oncologist has stressed from day one that the anti-estrogen medication is the most important part of my treatment due to the type of cancer HR+ HER2 -, so I will do what I can to keep taking it. I'm still hopeful that the side effects will lessen.

This is probably more of a response than you expected, sorry if I was long winded. I think it is important to share our experiences to help others make informed decisions. I feel a lot of the issues surrounding cancer treatments are not discussed and kept hidden, which I don't think is a good way to do things. I hope this is helpful and wish you all the best as you navigate the treatment that works best for you.