Ibrance success, originally thought to be Ibrance failure

luckylegs64

Hi Ladies,

I wanted to share my experience over the past week. I just finished up 3.5 months on Ibrance/Fulversterant/Xgeva. My PET scan was read a week ago as significant progress in metastatic bone disease, but no soft tissue involvement. My husband looked at the scan and said my skeleton lit up like a Christmas tree!! So we naturally started looking into what was Plan B as Ibrance had failed. Then we shipped my records to The Mayo to my "2nd opinion doctor" there to see if he knew of any clinical trials. He disputed that Ibrance had failed and instead said the response in my skeleton was bone marrow activation not mets. He thought the PET had been misread. Three radiologists later, incluidng the one who had read it originally, there is agreement with my Mayo Dr. - I go back on Ibrance tomorrow! HAVE A 2nd Opinion on your PET scans!!! Very thankful that I did!

JFL

I am so glad it worked out for you and that was caught. And glad Ibrance is working! It is heartbreaking that this probably happens all the time and patients abandon medicines that are working due to bad advice/scan interpretation. We don't have enough choices to throw out ones that work.

Husband11

Wow. That is amazing.

luckylegs64

100% agree with you JFL. After feeling grateful for the reversal, I had the sinking feeling that this may have happened to someone else without notice. My husband is a physician at this same hospital and he walked down to the radiology department to talk to them about this mishap and ask more questions - I'm praying this doesn't happen again.

Purple60

Hello. My story a bit similar in that I have been on Ibrance/letrozole/xgeva for 7 months. Diagnosed stage IV de novo. Did very well first scan after 4 months with total resolution of some tumors or 50% shrinkage of others. Only in bones no soft tissue. 2nd Scan after another 3 months shows increased mets to bone only. Doc took me off Ibrance in prep for clinical trial but looks like I won’t be accepted. So will see onc in a few days to discuss next steps. I want to get a second opinion and would very much appreciate if you could share the name of your Mayo physician. Thanks so much!

Moderators

Hello, Purple, and welcome to Breastcancer.org! We are sorry you have to be here, but glad you've found us!

This thread has been quiet for quite a while and luckylegs64 's lates activity was May 2018, so we would suggest you join in some other newer threads which are more active, or send the member a private message.

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