Fulvestrant

[visitingnurse]

Hi I have been on Fulvestrant for 3 years now and I am always exhausted and have a lot of joint pain! I was wondering if anyone else is experiencing the same thing. I am a breast cancer survivor the first surgery was 34 years ago. after many lumpectomies I finally had a bilateral mastectomy 2019. 2022 it was found mid sternum so after removal of the lump and radiation I was put on Fulvestrant. Thank you for your time in answering. October is Breast Cancer Month! I wish all of you a happy October!! God Bless all of us!! thank you.

[Hazelgreen]

The Mayo Clinic doesn't give joint pain as a side effect of fulvestrant. However, individual differences are wide. I've taken ribociclib (Kisqali) for the past 5 years, and have had considerable joint pain for the last year or so. Only back pain is mentioned as a side effect of Kisqali.

I'm experimenting with various painkillers to handle the joint pain which I blame on my age(79) and lack of physical exercise. Over the past two years, I've considerably reduced the amount of Kisqali I take so I don't think it is to blame for my joint pain.

[Jorgit]

Hello Visiting nurse. Admirable journey of yours. My mum is a long survivor as well for 40 years now. Unfourtunately she has a severe heart failure and she is now palliative care because of that but not cancer, so somehow when she is gone, we can say we beat the monster. She had mastectomy and ganglia removal decades ago as that is how they would do it at the time (probably no CAT-scans by then). Also she had then single beam radiation (nowadays they radiate from different angles so the damage to tissues is much less severe), which with the years caused chronic open chest ulcer, double AV block (sorted with pacemaker) and coronary vessels damage (sorted with stents) but nothing can be done for heart valve damage. She was treted with tamoxifen after the mastectomy which was kind of a novel promising therapy then, and for many years NED. Almost ten years ago, cancer came back as metastasic stage IV with several bilateral lung nodes and bone affected all over her spine and hips. She was treated for 5 years with letrozol with very good results and no side effects nor joint pain (other than several diverticulitis), until progression that she was switched to palbociclib 125 (three weeks ON - one week OFF), with fulvestrant every four weeks (28days instead of 30 days). No joint pain, but palbociclib causing potential coagulation issues (D-Dimer highly increased) and fatigue, so adjusted to 100mg (two weeks ON - two weeks OFF). Now, as per the severe heart disease, palbociclib was withdrawn and just using fulvestrant as monotherapy and again no joint pain answering to your question.

Do you get the two injections every 28 days or every 30 days?

Sometimes pain comes from aging itself as per arthrosis (I understand you have gone through bone density tests and so). Maybe a low dose pain killer helps to ease the pain should you have not try yet.

Wish you patience and courage as you have been doing already, and as many times, cancer can be kept at bay as a chronic disease and not a terminal one.

Kind Regards, Jorge