CommunitiesHR+ HER2-Has Anyone Experienced Increased Pain on Kisquali and Lexatrole?

Has Anyone Experienced Increased Pain on Kisquali and Lexatrole?

MS

Community Member

a year ago

Is anyone on Kisquali and Lexatrole? I have stage 4 to some bones in the back, and I am noticing more pain in the area than usual. Does that mean the Kisquali is working or not working? I have been on it since June 2024. I will be going for another catscan soon. My tumor markers have been fluctuating upward. Not a whole lot, but some. Has anyone had the same experience? Thanks.

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accepted answer

Accepted Answer

Changes in pain levels while on treatment can be concerning and confusing, especially when trying to understand what it might mean about how the medication is working. Many community members have shared similar experiences with fluctuating symptoms and tumor markers during their treatment journey, so you're definitely not alone in wondering about these changes. It's great that you have a scan coming up soon, as imaging will provide valuable information to discuss with your oncology team along with your pain levels and marker trends.

3+ patients found this helpful

SL

Community Member

6 months ago

So I am stage lV metastatic breast cancer. It came back in my lower back- 3 1/2 yrs ago. Radiation- then ibrance and Letrozole. PET scans every 3 months with Zometa 3 month infusions for 2 1/2 yrs. I am currently considered NED ( no evidence detected). So I am off the ibrance but still take Letrozole and the Zometa with 3 month PET scans. Yes I did have a lot of pain in the area’s of concern. I took Lyrica that blocked the pain. With 5% lidocaine pain patches to areas of my back where the tumors were. They work really well. The patches are prescription- it really helped also with the pain. I did not have any side effects from the Lyrica. The pain after a year and half subsided I was able to lower the Lyrica to only 50mg. I am glad I chose this route of treatment. It worked well for me. The first year and a half it was hard when i started the treatment protocol but slowly started to get better. I am back to enjoying life, my kids, grandkids. Walking, biking and weight lifting. Life is good. With the power of prayer 🙏.

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MS

Community Member

6 months ago

I am so happy you responded, and I am so happy that you are doing well. It gives me hope because when you feel pain, you right away associate it to getting worse. It is very depressing. THANK YOU SO MUCH. PLEASE KEEP IN TOUCH.

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SL

Community Member

6 months ago

Oh I am so glad I was able to help!! We are all in this together and it is nice when others can pass on the tools and treatment to others that worked for them. I have gotten so many little pearls of information from other people in outcomes 4 me that has really helped me in the side effects from the Letrozole. I am truly grateful and blessed. 💕please feel free to reach out.

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MR

Community Member

6 months ago

I am also Stage IV Metastatic an̈d take the same treatment. Letrozole 2.5 mgs 1xday & Kisqali 600mg 3pills for 3weeks on 1 week off. I have read many, many articles regarding Letrozole causing people to have more pain or just pain in general where they weren't having problems before. As for me? Apparently I'm so ate up with arthritis from my shoulders to my feet, that I hurt daily no matter what. Maybe ask your oncologist to swith the Letrozole to Anastrozole and maybe see if it helps. Unfortunately, I think it's just one of the side effects that whether we like it or not, we have to get used to it. 😕 Sending prayers for you 🙏 ❤️ 💛

MS

Community Member

6 months ago

Thank you, Melissa, for your response and advice. I will see how my catscan comes out. I don't mind some pain if the meds are working. But if it's not, it's time to change.

LB

Community Member

6 months ago

I was diagnosed with Stage IV metastatic breast cancer to the bones in June ‘23. My oncologist in Memphis and my oncologist at MD Anderson both recommended Kisqali 600mg daily for 3 wks, then off for one week, and Letrozole 2.5mg daily. I get an Exgeva injection once a month. The oncology nurse goes slow when injecting it. Not sure why?? I have a PET Scan every 3-4 months (next one is on Oct. 1😩). I haven’t had any problems with this protocol other than the one week I’m off the Kisqali when I seem to have more joint/bone pain. I feel better when I’m taking the Kisqali than I do the week off. Maybe a mental things.🤷🏻‍♀️

CA

Community Member

2 months ago

Changes in pain levels while on treatment can be concerning and confusing, especially when trying to understand what it might mean about how the medication is working. Many community members have shared similar experiences with fluctuating symptoms and tumor markers during their treatment journey, so you're definitely not alone in wondering about these changes. It's great that you have a scan coming up soon, as imaging will provide valuable information to discuss with your oncology team along with your pain levels and marker trends.

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