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.

[visitingnurse in reply to Hazelgreen]

Thank you for replying. I do take Advil for joint pain and it helps and I also exercise daily. So i guess the only thing is to be thankful that it keeps the cancer quiet. The old saying "keep calm and carry on"!! has to be our motto.! God Bless! We are lucky to be still fighting!!

[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

[visitingnurse in reply to Jorgit]

Thank you so much for your reply. Your mother is a true fighter and she is luck to have you stand by her! I will keep both of you in my thoughts and prayers. God Bless !

[Praising in reply to Jorgit]

I agree a fighter what is potential coagulation w Ibrance. I’m on that

[kiwi67]

I didn't have the joint pain but now I have changed to Capecitabine I realise how exhausted I was when I was on Palbociclib and Fulvestrant. Don't know which one it was or if it was a combination of the 2, but I am much more motivated now.

[visitingnurse in reply to kiwi67]

Thank you for answering. Good luck with your new treatment. God Bless!

[TwithBC]

… I have been on letrozole for 7; around my third year I thought I was dying (no pun intended) from joint/muscle/bone and I was recently looking back at emails to my oncologists over the years and apparently I was suffering from very bad exhaustion on year two. My point is — there is hope that your body adjusts (mine did); joint pain comes and goes but is mostly totally gone now—and I’m definitely not exhausted like I was in year two (to the point of emailing my doctor!). I hope your. Ish adjusts soon and that the meds are keeping your cancer at bay. Caffeine is not an enemy, either … matcha green tea is incredibly healthy and puts pep in step for many hours after it’s digested (has a slow release of caffein unlike coffee—although I love coffee too!) I hope the exhaustion your experiencing is soon a thing of the past on this journey!

[TNVol]

Echoing your exhaustion and joint pain I'm couple of years older and also take Verzenio with the Fulvestrant injections. Went shopping yesterday at a large mall and the long walk was difficult but as long as this combo is working (almost 4 years), I'll trudge along 😜 Hope it continues to work for you

[love2golfwell]

I'm sorry you are having these issues but glad that this medication has worked for so long for you. I have joint pain with the letrozole I am on but find that exercise helps. Also I go for monthly massages and that really helps loosen things up. Epsom salt baths work, too. I also use a rub I found from a company called Revive that contains essential oils. It is called Sore No More. All of these things are temporary aids, but I have not had to take pain meds. I hope you find relief and this medication continues to work for you.

[cpidacks]

I have been on Fulvestrant for 5 1/2 years. I was diagnosed with Stage 2 breast cancer in 1991. I had a lumpectomy, chemo and radiation. February 2019 I was diagnosed with MBC in the liver. Fulvestrant is my first line of treatment. I have not experienced joint pain or fatigue. I have itching at the injection sites for a few days after injections. Sometimes the injection site is sore. So far I am stable with no progression. I now have my scan every six months. Labs and tumor markers are normal. Good luck to all of us in our journey.

[fancydog]

I have been on Fulvestrant only for about 9 yrs and notice some fatigue for a few days after the injections but no increased pain. I do take Celebrex daily as I have DJD prescribed by Dr.

[Praising]

I’m exhausted and sleep nap every afternoon. I’ve only been on the combo 9 mo. I’ve had some progression. Low white couunts. I’m glad you’ve had. 3 years. On Ibrance too. Where is joint pain? My shoulder is hurting now so…..I wonder.