Letrozole(Femara) /joint pain threads continued.....

[OceanBreeze3]

I have been reading with interest the threads concerning Letrozole and the many side effects we all deal with. My history: DX May 2019 MBC to right femoral hip/thigh. IM nail procedure to stabilize. Started Letrozole/Ibrance. NED after 3 months of treatment! Tried the brand name of Letrozole - Femara - because some people reported the brand name was better on joint pain. It was no different for me and much more costly so I went back to Letrozole. For me, the pain has slowly gotten worse the last 3 1/2 years. My bone scans would say "degenerative appearing changes in feet & hands" This time (Dec 2nd) the report said "There are degenerative-appearing changes in the spine, shoulders, sternomanubrial junction, elbows, wrist, hips, knees, ankle, feet most pronounced at the first MTP joints." I'm scheduled for surgery Dec 8th for a torn rotator cuff, torn bicep tendon, I've had cortisone shots in both knees, feet, shoulders. I'm 55 years old, never have had these issues prior to MBC, try to walk and exercise but its too painful. No wonder I'm in so much pain and all these degenerative changes have happen mostly the last 6 months. After reading the recent threads on this - I talked to my Oncologist at Dana Farber in Boston at my Dec 2nd appointment. My bone scan was clean again - NED. Now this is where my mind is blown - he is taking me off Letrozole for 2 months then putting me on Tamoxifen. I stopped the Ibrance 6 months ago without his knowledge because I was tired of the low blood counts and trying to regulate what was best as far as dosing schedule (3/1 or 2/2 etc). He was not phased that I stopped it. He agrees based on the scans, that the Letrozole is eating away at my bones and muscle/tendons. Although Letrozole works better than Tamoxifen it is better on your body. When I go back in May, we will do both a CT Scan and a Bone scan. HE TELLS ME IF I AM NED FOR THE NEXT 3 YEARS, HE WILL TAKE ME OFF ALL MEDICATIONS! WHAT??? He tells me that research is showing that (1) they are doing less breast surgery's and treating with meds instead - if you dont have MBC it could turn into MBC so they are going straight to meds instead of surgery to shrink the tumors and remove the cancer cells from the blood stream. (2) That people who are NED for over 5 years will be considered cancer free and medication can be stopped! Like the people that have a lumpectomy or mastectomy, then are given tamoxifen for 5 years, then they stop. This is mind blowing to me - since most of us were told MBC never goes away, you will take meds for the rest of your life etc etc. The whole thing is a very scary thought now. He tells me that because we found mine very early (spot in breast and hip bone) and the medication worked so well he feels this is the route to go. I feel happy not happy. I will definitely be requesting the test that HurricaneHeather talked about, along with PET scans the next 3 years. My next question for him in May will be: if I didnt complain of the pain on Letrozole, would he still have kept me on it for years or would there have been a point when he suggested stop all then? I know research/science changes but........this is hard for me to wrap my head around. The possibility of having my life back to a more normal state, yet I would always be scared it was lurking in my body still. Anyway, knowledge is power so if my information helps anyone else to have this conversation with your oncologist then we all benefit from the opinions/examples of others on this MBC journey. Lynn

[dnamscg]

In 2008 I had a bi-lat masectomy for stage 3b BC. Five monts of heavy chemo , 28 days of radiation and 10 years on tomaxifin. May of 2021 had explants to try any get rid of some pain and in December they found MBC in my mastribium and tumors everywhere from my skull to my feet and hands. I started Ibrance and Faslodex in February this year and am on the lowest dose 2 weeks on and 2 off and just 1 shoot instead of 2. I have alot of pain at night even though I take 5 MG of oxycodone. Five disintegrated vertebra in my spine and alot of ribs. Someday it would be easier to give up all the meds. Loss of weight continues. I felt better on 5 months of regular chemo than I do now. Every time my meds are lowered I want to just quit this journey. Had a bad night so today I am really venting. I am so sorry for what all MBC sisters have to go thru. Hope you find some relief and peace,

[jersey-jazz in reply to dnamscg]

I say, Fxxx it! It reads as if your doctor has a brain and is using it. I never took any of those treatments after I was told I was free of cancer. I just looked at the list of side effects, picked one and reported a different side effect for each drug that was prescribed.I lied to the onc rather than having a wasteful talk with her. I just was not going to take drugs on the off chance that it would stave off more cancer. The Letrozole did horrible things to my body. I wish that I had known to have stopped it sooner. I find it interesting that you get only one shoot instead of two. I am going to ask for that. The less poison we put into our bodies, the better off we are. I refused to take Ibrance because of two reasons. The first is that the charge is S17,000 per month for the drug. The insurance companies mostly take the hit and then we pay up with our monthly insurance bills. The second is that I disagree with having two variables to rate instead of one. If you have a reaction, you do not know if it is the Ibrance or the primary cancer drug that you are reacting to.

[dnamscg in reply to jersey-jazz]

I have had the same ong since 2008 and he tells me what he would like me to take and I check the side affects and agree or ask for other choices. Two shots od Faslodex gave me too much pain in October so he put me on one and it is much more tolerable. He always listens to me and his seeing me every 6 months for 10 years got me through 2019 when I went off tomaxifin thru to 2021 without any cancer meds. I think if you start with stage 3 BC you are never cured. Maybe with a lower stage it could be cured but I never counted on it at my stage, i think if I had just stayed on Tomoxifin I wouldn't be where I am today but there is no way of telling. I started on planning my death when I was diagnosed with MBC by getting rid of stuff I new I would never use again. Mostly craft stuff and all the clothes I can no longer wear due to weight loss. Then my husband and children will have less to sort through. I am a realist and not pessimistic. I need to have control and wish they could give me an estimate of how long I will go through this but they don't have any idea or aren't willing to guess. I rather know so I can still do the things I want to do just not only the things I have to do day-to-day.

[Hazelgreen]

Hello Lynn,

It seems to me that you have a terrific oncologist who is really paying attention to what is happening in your body. Letrozole, apparently, does weaken bones, while tamoxifen tends to strengthen them. Since you are NED even though you stopped Ibrance, it seems to me that you are very fortunate, and need to focus on getting control of your joint pain. If letrozole is the cause of the "degenerative appearing changes" then it makes sense to me to see what happens with tamoxifen.

Best Wishes, Cindy

[TammyCross in reply to Hazelgreen]

I went off Letrozole because my hips hurt too much. Now on Arimidex (brand name) and living with quite a bit of pain -- not bones, but joints, I think synovial membrane -- and stiffness. Do you know if anastrozole also causes degeneration? I don't have bone density tests anymore because I have PET/CTs but the reports mostly focus on cancer, not the state of my bones and joints. Sorry to find this is not a side effect that goes away over time. I exercise a lot, so think that helps with bone density, but the more my joints stiffen and hurt, the less I can do.

[wendle3007]

I've been on Letrozole for a year now and struggling with joint pain/stiffness. My GP referred me to rheumatology and I finally saw them yesterday. They are getting more blood tests done and two additional scans including a bone density scan. They explained that letrozole can cause osteoporosis and that the Denosumab (Xgeva) I am on may not be enough to counteract this. If the scans say my density is low then I guess my Oncologist will have to review the bone therapy that I'm on - I can't see him stopping the Letrozole because I'm also on Palbociclib (Ibrance) and it has to be taken alongside medication such as Letrozole.

[Georgelila]

I am reading all of these posts about joint and bone pain with interest (what an understatement) - I have always been athletic, ran a half marathon and three ten mile races since 2019 and post diagnosis too and now in the last 3-4 months it hurts to walk. I had no idea Letrazole can cause osteoporosis or bone degeneration and I’m getting off immediately . Like tomorrow . The onc is planning an alternative and from what I’ve read tamoxifen is not one that they are widely pairing with Ibrance. Does anyone know why? I read it is kinder to the body but maybe not as effective at suppressing estrogen.

courage and breathe - I tell myself all the time. Even got a tattoo that means breathe in ancient Sanskrit.

Elizabeth

Tattoo - Breathe

[Gerbo in reply to Georgelila]

Aloha Georgelila. I personally found Tamoxifen awful (not kinder to the body) + long term use could potentially lead to uterine cancer. I had several complaints which made my oncologist switched me to Anastrozole + Ibrance. I do well with Anastrozole estrogen blocker. As long as I eat healthy, sufficient sleep, exercise and low stress the menopause symptoms are manageable. However, after 1+ year of Ibrance with my immune system continuously taking a toll with low neutropenia around 300-600 and my body couldn't fight off infection. My oncologist finally took me off Ibrance and I started Verzenio 3 months ago. Now I deal with chronic diarrhea. In addition Ibrance scared the right side of my lung and now I have degenerated spine lumber. Prior to targeted treatment, I had my heart and lungs tested to make sure I can with stand the medication. I recall the technician asked if I was an athlete- runner. I was a certified cycling, turbo kick box aerobic instructor and I love dancing. 4 years into treatment, I'm not the same person, not can I move the same. However, I'm gently finding my way back and I'm not giving up on myself and my 6 year old. Life is just different and everyday I'm working to create a new norm and find the beauty in the simple things. Not sure if I answered your question, but that's my experience. By the way, I love your tatoo. Mindful breathing has helped me tremendously. With love always.