Life After Letrozole

Scripture of the Day:

“Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.

John 14:27

I am curious about what it will be like to go off my Letrozole in August. My doctor has given me the choice. So I started looking at what some people are saying about it. I am so tired of the pain that comes with the medication. I am also curious about weight loss. I have not found anything on that yet. The sites I have looked at say that weight gain is one of the side effects. I can tell you that I went to a Rec Center 5 days a week for 7 months and only lost 8 pounds. So I'm hoping for a change in that area.

If this is a concern for you there are certainly more than one site with discussions about stopping that medication. I have not, as yet found any medical information about it.

Going off Letrozole - this is the link for the following conversations.

Going off Letrozole (Femara) after 5-1/2 years

by artgirl2014 on Wed Nov 12, 2014 10:59 PM

Quote | Reply

In 2008 I was diagnosed with breast cancer. I had a mastectomy and was placed on Femara (Letrozole). I stayed on it faithfully for 5 + years but decided about 6 months ago to stop. My oncologist gave me some information on research showing that patients who remain on these AI drugs have a decreased chance of recurrence in 10 years. Since I am 65, I am very concerned about my bone health and because of the Letrozole, I now have severe osteoporosis. I also suffered from a considerable amount of joint pain and other less serious side effects. If you have had a similar experience and chose the same path, how are you doing and are you relieved that you made the decision to stop? I am busy second-guessing myself right now and would like to hear from others! Thank you!

I am compelled to write, because I too was diagnosed with BC in 2008, had a mastectomy, chemo, radiation, and then 5 years of tamoxifen. I am now 53. In April, I was running 3-4 miles a few times a week, was down around 153, and generally feeling great. My doctor said that "studies have shown" that after 5 years of tamoxifen, one in my demographic should switch to 5 years of Femara, so I did -- around May of this year. By mid-June, I had many aches and pains, could barely run around the block, and had gained 10 pounds. I sought treatment from PT and orthopedic specialists, thinking that it was from too much running.... but secretly, I blamed the Femara. That was the only change in my life right then!

With my doctor's ok, I went off the Femara at the end of July, and then went 3 months not taking anything. I'm back to running, albeit I have to build myself back up, but at least it is relatively painfree.

I do not think you are crazy to go off the Femara. It will be interesting to see if, in a few months, some of your joint pain and other things go away. If so, it might be worth it just for that. If you change your mind, I'm sure you could go back on it. But I would also ask if there were any other drugs with the same/similar effect. I am back on Tamoxifen, which I find is just fine. The aches and pains on Femara though were negatively affecting my life!

Ooops - I overlooked your statement that you had already stopped Femara 6 months ago. Has your joint pain subsided as well?

Much better. Still some pain but so much better than it was! Thanks so much for responding. I was a runner, earlier in my life. It was the one exercise that made any sense to me. It was very organic in a way --- like I was connecting to all those who ran before me and before all of the health clubs and exercise equipment.

I was diagnosed in November 2007, was lucky to have lumpectomy and radiation, followed by Tamoxifen. Tamoxifen was easy for me, until I broke my leg and then got a blood clot. The docs blamed Tamoxifen for the blood clot, and switched me to Arimidex. I stayed on it about a year and was having so much joint pain my Doc switched me to Femara. I hated it too. There were days I could hardly get out of bed, and the first ten feet or so of walking were excruciating, but got better the longer I walked. After five years (total for all drugs) I decided to go off the Femara. My onco doc wanted me to complete five years on the Femara (in addition to the 2.5 years I was on Tamoxifen and Arimidex). I said no. This was about a year ago. A lot of my joint pain went away, but not all of it. I recently had a physical and found I was very low on Vitamin D. From reading on this forum, I believe it is a side effect of the Femara, and most likely the reason I still have bone/joint pain. I am working now to get my D levels up to where they should be. I am still fatigued, but have some weird blood issues to blame for that (as far as I know, not related to cancer). At the end of the day, I balanced taking the meds with quality of life, and that is something only you know best. Good luck. Mary Lou

If you are making this journey as I am, may God bless you with His healing touch. I know He loves you.

Breast Cancer - Open in Front

Sunday, April 24, 2016