Changed from Ibrance to Afinitor - SHARE Metastatic ...

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Changed from Ibrance to Afinitor

jstickrod profile image
14 Replies

Not the results we wanted from my first pet scan last week since my diagnosis of MBC in September. After only three months on Ibrance, all of the spots had decreased in size or remained stable EXCEPT for the liver. There were 2 new small spots on the liver, and my oncologist said we had to change medications to try a new route. Now I am on Afinitor and Aromasin. I was doing so good on Ibrance, I really hated to start a whole new drug path after only 3 months. Has anyone had a similar situation?

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jstickrod
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14 Replies
Lisa-n-AZ profile image
Lisa-n-AZ

I was diagnosed in Feb 17 with MBC 6 lesions on my Liver and 2 in my spine. My first oncologist was very aggressive and I had 4 cycles of Dose Dense Chemo every 2 weeks for 4 rounds (Adriamycin/Cytoxan) then the plan was 4 cycles of Taxol. Prior to the Taxol I changed treatment plans with a new oncologist (mayo). I have just finished by 8th cycle of Ibrance/letrozole. I have been NED since Aug. I wish I knew which of the treatment plans go me to NED or if it was combo. There so many treatment plans and one size doesn't fit all. But, I am a fan of getting a second opinion.

You are in my prayers.

jstickrod profile image
jstickrod in reply to Lisa-n-AZ

I am getting a second opinion in two weeks. I just need someone to tell me I am on the right path for the best treatment plan for me.

Lisa-n-AZ profile image
Lisa-n-AZ in reply to jstickrod

That is a pretty heavy lift...something all of us sisters want. I had two oncologists giving me their best advice. It was a fork in the road, I had to make the choice. Everyday, I pray it was the correct path. You are in my prayers.

Lisa

nstonerocks profile image
nstonerocks in reply to Lisa-n-AZ

Yes it is a tough road to walk no matter how you are doing. I have found comfort in meditation and Buddhist readings. Very calming. I see Therapists and get inspiration from Kris’s Carr. She has a rare stage 4 liver cancer and has made lemonade out of that big lemon. I’ve needed a lot of help to get my head right and it is a work in progress. Love this board and my sisters on it. Happy Holidays and health and peace to us all.

BeckyHobson profile image
BeckyHobson in reply to Lisa-n-AZ

Super glad you got the new doc. That first round of treatment sounds like what I had back in 1999 when I had stage 2B and a mastectomy. 19 months of Ibrance/Letrozole and going strong

Westray profile image
Westray

I took ibrance for 3 months only and pet scan showed not working so started Afinitor with exemestane. Has only been a week. This is actually my fourth treatment. I have bc spread to bones. I was in remission for 5 years then came back to the bones. Just arrived to nyc Sloan Kettering for second opinion. So let’s see . praying

beachlover65 profile image
beachlover65 in reply to Westray

Hello Westray! I am wondering how you did at Sloan. Did they give you any answers you didn't already know? Ibrance doesn't seem to be working on me either. I am going for a scan in 10 days to see if my tumors have enlarged. I have also been referred to Johns Hopkins to see what they would say about my case. I hope that you are doing well! I'm in the same boat as you are - spread to bones, but also to the liver.

breastcancerconscrip profile image
breastcancerconscrip in reply to beachlover65

As someone with MBC, bone mets I chose to move from my original onc to MSK about two years ago because as a research hospital it will have more treatment options (i.e. clinical trials). Since all we're guaranteed about this disease is that at some point the treatment we're on will fail and we'll need to move on to another, having more treatment options = longer lifespan. Research also bears that out. I'm quite happy having made the move. I've learned a lot more about my disease and options I have since moving there. Wishing you the same.

beachlover65 profile image
beachlover65

How are you doing now, jstickrod? I hope you are feeling better and have found a treatment that works. I am not doing well on Ibrance/faslodex combination right now. I have a scan soon to tell us more.

jstickrod profile image
jstickrod in reply to beachlover65

When I went for a second opinion, I changed to the new oncologist, and he put me back on Ibrance/Faslodex regime, so was only on Afinitor/Aromasin for one month. I am in month 7 now of Ibrance/Faslodex. I still feel fine, but my tumor markers are slightly rising each month. He says we will know if/when the Ibrance has stopped working, and will switch me to a new treatment. We have not done any scans. He is not a big believer in scans unless necessary. I really hate to go off Ibrance since I have tolerated it so well. No side effects to speak of.....What problems are you having on Ibrance/Faslodex?

beachlover65 profile image
beachlover65

My only problem is my markers going up. I feel pretty good - just knee and bone pain. It is good to know that your doc still has you on the meds even though your numbers are going up. My doc told me that it is more important that my liver function is good than the marker number. I'm glad that you have no side effects.

jstickrod profile image
jstickrod in reply to beachlover65

It sounds like our Drs are similar in opinions. My tumor markers are continuing to rise, and he said we would keep a close eye on that, but my liver function results are normal. I'm scared Ibrance is not working, and we will have to change meds. Does anyone have a similar situation, and what meds did they change you to?

Kimr2081 profile image
Kimr2081

I was on the same thing and it wasn't effective so I went on a trial that included Aromosin, Afinitor and Ribociclib. While it worked and the tumors in my liver were gone the side effects from the trio of drugs was soooo bad i had to stop it. I am now just on Aromosin and it is not working so having to probably to some sort of chemo. I had a PET scan yesterday and see my oncologist on Friday.

The worst part of the whole thing is that i was on an anti-depressant when i started the trial which had worked like a charm since my original diagnosis and they had to take me off of it. Once i stopped the trial I went back on it however it's not really working. It has helped with the depression but my anxiety is generally off the charts. So i am facing another major challenge with the tumors coming back and starting a chemo treatment AND my head is a mess and its hard to want to fight back!!

Thanks for listening ladies. I haven't been on in a long time because I have felt so bad emotionally that its been overwhelming.

Yes, I did not do well on Ibrance. I've read research, though, that says sometimes even if Ibrance fails it sets us up for doing much better on Affinitor/Aromasin. I found that to be the case. It's not a bad combo. I lucked out with few side effects (some hip joint pain at night that went away with Ibuprofen.) Wishing you the same.

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