Knee, foot and joint pain on Ibrance, Faslodex and Xgeva

[lynnhbtb]

So, I'm on 75 mg. of Ibrance, monthly Faslodex and every 8 weeks on Xgeva for about 6 months now. Last scans (after 3 mths on this regimen) showed full treatment response, which is fantastic and I'm grateful! Now, I'm having patella knee pain and foot pain and other random joint pains. The knee stuff is really starting to hamper my quality of life, especially with exercise. I run, lift weights, hike, swim, etc. It keeps me sane. But, I'm starting to get worried about this knee pain and that will start to limit my activity. Dr. says probably from Faslodex and that it's building in my system. No estrogen=joint pain.

First, anyone else having this issue? If so, what did you do about it?

Should I try to cut back on faslodex? Anyone had experience with this? I don't want to sacrifice my clean scans, but also want to live my life. I appreciate any thoughts about this.

Maybe I should add, that mets were to neck, vertebrae, pelvis, hip, rib. Had radiation to neck and have lingering symptoms (numbness in hands, weakness in arms) off an on.

[Hihif]

Hi Lynn,

Congratulations on having full treatment response! That is a blessing.

My solution to my knee pain was gel injections to the knee. I believe you have to have some arthritis for an orthopedic surgeon to give them to you. My insurance covered the cost.

Before I got the injections, I used Duro-Med Industry heating pads that I heated in the microwave.

I’m on Palbociclib and Letrozole. I think it was from the

Letrozole.

Regards,

Texas Princess

[lynnhbtb in reply to Hihif]

Thanks TP. Appreciate your response. I"ll keep the injections in mind if things get worse.

[diamags]

I've had the knee pain for almost 5 years now. When it gets really bad, I wear a brace. I hike 3-5 miles every day. It's the Fasoldex. I figure it's one of the easier side effects, so I deal with it and am grateful it's not worse.

[lynnhbtb in reply to diamags]

Thanks for your response. Let's keep moving!!

[kkrouse]

I had joint, feet and hands pain on Letrozole. It became debilitating, and the drug stopped working. Now on Ibrance and Faslodex and the discomfort is minimal, in comparison. I use CBD tincture for the pain. It’s better than ibuprofen, and doesn’t upset my stomach.

[lynnhbtb in reply to kkrouse]

Thanks for your reply. Where do you get your CBD and do you use it internally or topically? Seems to be all the rage right now.

[kkrouse in reply to lynnhbtb]

I take the tincture internally, but I know some use the oil topically. You can get both online.

[Crazydentist in reply to kkrouse]

I’m going to try Cbd oil..that’s all that’s available in England..unfortunately

Barb xx

[13plus]

Hi Lynn,

Happy to hear of your positive response so quickly!

I'm sure it is the Faslodex. I'm not having any issues with the drug.....though I have had muscle pain over my upper thoracic spine since a pruning stint, which I wondered if it was the Faslodex that triggered it.

Before the mets I had letrozole which was good, only mild stiffness for which I took tumeric. But it obviously stopped working for me! And before that...Arimidex which was AWFUL for me. That's a long story but one of the first terrible side effects was calf muscles so sore I couldn't walk. Fortunately I found a terrific manual PT who did this whole heat /exercises/deep massage/ice routine that helped a lot. But I got worse with more pain (and weakness) in other places.

The key here is to ask if you can try like a cousin of the same drug.

I don't know how interchangeable Faslodex is in this medical situation Eg. Arimidex and letrozole were different but did the same

Job. So I would ask your doctor if there is something else you could

try instead. But also be willing to take it a little longer, your symptoms may dissipate. And/or ask if tumeric is ok to try. It does take a while to help though.

I'm also active so I totally hear you on the need to be able to keep moving!

[lynnhbtb in reply to 13plus]

Thanks for sharing. I appreciate it! I think I will give it a little more time, but good to know there are alternatives available. Keep on moving!!

[SeattleMom]

Hi, Lynn. I suffer from joint pain as well, typically more pronounced during week I am off Ibrance and just starting back on a new dose. My affected joints are knees, hips, and elbows. Twice a day of X strength Tylenol has helped a lot. Good luck and God bless you! XO Linda

[lynnhbtb in reply to SeattleMom]

Thanks, Linda. Tylenol will be an option for sure. Blessings to you!

[Clair19]

I’m on Faslodex only so because I take nothing else I might explain what I have. I do have pain in joints mostly shoulders but not in legs but I have Mets in spine so I try not to do anymore impact sports or my crazy workouts. It sucks but so many friends have overdone things and end up in physical therapy. I don’t know your age but I can feel the hardship this disease has done to my body, skin and hair. Also my hands fingers tingle and go numb. I don’t know if that helps or not. I was just diagnosed a year ago so I might be a little more cautious. You know your body and how much it can take. I’m glad for your good scans. And good luck to you.

[lynnhbtb]

Thanks, Clair. I appreciate your response. We are so different, but have much in common as well. Best to you!

Lynn

[lynzer in reply to lynnhbtb]

I’m also on falsadex and Ibrance. The patella got so bad, I could barely sit on the toilet.

I did PT and the pain has lessoned. Then after 7 weeks of PT, did a 10 week strengthening work out and the knee pain completely went away!

Exercise and drinking lots of water is the key. I haven’t excercised in about 2 weeks now and I’m starting to feel pains again. Going to get back in it as it does help a lot!!

Hang in there from one Lynn to another 🤗

Lynn

[Gibbsbet]

Yes I'm having the same side effects. I'm on Ibrance 125mg. With xgeva and faslodex 500mg injections monthly. I'm 71 but I but have always been pretty active but now with the knee, feet and ankle pain it's getting me down. Also I've noticed my skin is really losing it's elasticity and my face seems to be really becoming more wrinkled.

[sjasper]

Good morning. A co-worker, who is 77 years old and still VERY active, introduced me to a home remedy that really works. Every morning, he juices 8 ozs of a gold potato that has been in the fridge for 24 hours. Over a 7 week period, I noticed that the pain was not as severe.

[lynnhbtb in reply to sjasper]

Thanks for that info. I had forgotten that I wrote the original message a year ago. Once I stopped the faslodex my joint pain went away. So it was definitely hormone related, should I say, lack of hormones.

But the reason I stopped faslodex and Ibrance is because I had what my oncologist called breakthrough Mets last year to liver. I’ve been on IV chemotherapy for a year. But, I just had a birthday I wasn’t supposed to see, so there’s that!

59 doesn’t feel so bad.