Is anyone taking the meds affinitor a... - SHARE Metastatic ...

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Is anyone taking the meds affinitor and aromasin?

Eliactida1955 profile image
8 Replies

My dr just told me to drop Ibrance and letrozole due to progression in bone on the p e t scan. My tumor markers rose to like 72 ca 27-29. I’m worried about the change -please let me know if anyothers on this. Thanks 🌹

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Eliactida1955
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Jewelyn profile image
Jewelyn

Hi just to let you know what’s happening with meds etc. I currently take Ibrance 125 3wks on 1 wk off. and foslodex injections monthly and Zometa infusion every 2 months. On this regimen for about 6 yrs. I have 1 lesion that showed up at the t6 (2011)in my spine. I had radiation on that spot. My original cancer was 1992 stage 2 1 cm tumor and 3 positive lymph nodes chemo and radiation and tamoxifen. No issues till 2011. I original was put on femara and Zometa but in 2013 switched to Ibrance foslodex and Zometa because this is the current recommended treatment for MBC to bone.

Eliactida1955 profile image
Eliactida1955 in reply to Jewelyn

Wow that is a good run with Ibrance: I haven’t talked to anyone who has been on it longer than 5 years . They are taking affinitor and aromasin now. My dr at M D Anderson wants to start this. My lesions are up and down spine but stable left femur lifting up and new area at right acetamebulum . I will meet with my hometown onc to see and have heard about falsilodex. Is this treatment working for you? Side effects? Thanks for your response 🙏✝️

Bettybuckets profile image
Bettybuckets

My ca 27-29 has been 90-106 mostly but just jumped to 136… so my dr is worried but wants to watch things and gave me the news thst the scans were considered stable. I think you should ask him to wait just a bit unless he knows your cancer is galloping away. You don’t want to leave this treatment too quickly.

Eliactida1955 profile image
Eliactida1955 in reply to Bettybuckets

That’s how I feel initially ca 27-29 was probably over 100 then had went down to 25-26 jumped up to 40 then to 52 now about 72 . This was in course of a year . The pet down two weeks ago shows a couple of areas but the other dr did a ca 15-3 which was around 68. I’ve never had that one. I’m due for lab next week so I will see the dr here and talk to him. I had went to M D Anderson and the pet scan there was different and the dr wouldn’t say much. We will see and I don’t want to give up on Ibrance. Thanks for you response.🙏✝️

Sparky95 profile image
Sparky95

I am just coming off of Afinitor and Aromasin. The greatest challenge I had with Afinitor is that it changed my tastebuds. Sweet things tastes horrible, like soap. I developed a few mouth sores but the Dexamethasone mouth wash worked great. When I first started I had diarrhea. I felt like I was adjusting to Afinitor when I developed pneumonitis which is why I had to move on to Xeloda.

Eliactida1955 profile image
Eliactida1955 in reply to Sparky95

Thanks I’ll look at that but debating whether to start it or not.🌹

misshope1 profile image
misshope1

I was on Ibrance and letrozole and when that stopped working went to Affinator and Aromasin. I had to go back to letrozole and a reduced Affinator dosage 10 to 7.5 due an rash and skin reaction. So far I feel fine.

Eliactida1955 profile image
Eliactida1955 in reply to misshope1

What was the reason you went back to letrozole? I’m going to see what my dr says here but I doubt he will listen to something different than what M D Anderson said. Thanks for your response -I wish you the best🙏🌹

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