Exemastane and Afinitor : Hi, it will... - SHARE Metastatic ...

SHARE Metastatic Breast Cancer

6,809 members8,426 posts

Exemastane and Afinitor

Barb5 profile image
18 Replies

Hi, it will be 5 years ago in July I received my diagnosis of metastatic breast cancer. I started out on exemastane and zometa infusions worked great for 4 years then I was put on letrozole when it stopped working. Letrozole only worked short time anyway Cancer has spread to a few spots in my spine. Dr and I are looking at my options and are leaning toward Exemastane again with Afinitor adding the Afinitor May get the exemastane to work again. My question is has anyone here been on this combination and how were side effects and outcome. Hope everyone is having a good day today.

Barb5

Written by
Barb5 profile image
Barb5
To view profiles and participate in discussions please or .
Read more about...
18 Replies
barbarac76 profile image
barbarac76

Hi Barb5,

I was on the exemestane/Afinitor combination for two years. It worked will for me in decreasing tumors initially (during the first three months) and keeping the cancer from progressing for the rest of the time. My doctor had to play around with the dose because when she increased my dose from 5mg to 7.5mg after the first month, my liver enzymes increased dramatically and I had many mouth sores. Eventually, I stayed on 5mg for one year; then my doctor increased the dose to 7.5mg gradually (7.5mg every third day, 7.5mg every other day, etc) until I was back on 7.5mg everyday. That worked for a year.

Hope this helps and hope you have good results.

Barb5 profile image
Barb5 in reply tobarbarac76

Thank you. What did you change to after that if you don’t mind me asking? Have a great day.

barbarac76 profile image
barbarac76 in reply toBarb5

After exemestane/Afinitor, I was put on Faslodex injections (500mg every 4 weeks) and Ibrance (125mg). Before exemestane/Afinitor, I was on Letrozole without ibrance. I have also been receiving Zomata infusions every 3 months since I was diagnosed in August 2013.

Fradis2 profile image
Fradis2 in reply tobarbarac76

Are you still on faslodex and ibrance ? Are you doing well on them ?

barbarac76 profile image
barbarac76 in reply toFradis2

No. It stopped working in January 2019 - progression to liver. I'm on Xeloda now. Will have a scan in May to see if it's working.

Fradis2 profile image
Fradis2 in reply tobarbarac76

May you get a long time out of Xeloda. I’ve just started aromasin/afinitor after progression on femara alone .. but I haven’t tried faslodex or ibrance so I’m hoping that It would give me some time after A/A.

barbarac76 profile image
barbarac76 in reply toFradis2

Thank you. You've got a long way to go - so many good options ahead of you. I wish you well.

Barb5 profile image
Barb5 in reply tobarbarac76

Thank You for the information I will be sure to pay attention to side effects and now know can change dose. Hope all is well with you.

alicehblack profile image
alicehblack

barb, I have been on Afinitor/Aromasin (is that the same as exemestane?) for 2 months now and I am on the 7.5mg. I was on Ibrance and, for me, the Afinitor is much better. The only real side effect I have had are pimples on my face and I just slather a little makeup on them. I occasionally get out of breath but it quickly goes away. Otherwise I have been amazed how few side effects I have experienced. I hope that is the case for you. Hugs and good luck.

Alice

Barb5 profile image
Barb5

Thank you Alice that is encouraging. Wishing you all the best.

Kimr2081 profile image
Kimr2081

Hi Barb5 - I just started those two drugs along with Ribociclib so am taking 3 drugs. Its a study through UCLA, and the Ribociclib is the study drug, as the Ibrance and Letrozole did not work for me. I have only been on them 2 weeks so I am probably not a good reference but at least initially so far so good. No side effects. Best of luck to you and I pray for all my "sisters" daily!!

Barb5 profile image
Barb5 in reply toKimr2081

Good luck to you that’s interesting adding the Ribociclib what kind of drug is that? Keep us posted would love to hear you’re doing great!

Kimr2081 profile image
Kimr2081

Ribociclib is similar to Ibrance. We will see - I pray it works.

Barb5 profile image
Barb5 in reply toKimr2081

🙏

SpaLadyLisa profile image
SpaLadyLisa

Hi Barb5, I've been on Afintor with exemestane since July of this year. The biggest side effect is mouth sores however I have been blessed not to have them. Fatigue has been my biggest side effect. I was diagnosed MBC June 2014. I was in clinical trial for the drug Kisquali (now it's released) and letrozole. That combo worked for almost 3 years before we went with Afinitor and exemestane.

Barb5 profile image
Barb5 in reply toSpaLadyLisa

Thank you hope this one works for a very long time for us.

SpaLadyLisa profile image
SpaLadyLisa in reply toBarb5

I'm confident it will! I've found what I focus on, is what I usually get.

beachlover65 profile image
beachlover65

Hi Barb5! How are you doing? I hope you are finding good results on this combination! I was on Ibrance with Faslodex for 6 months and it didn't work. I was just told that I will be doing Exemastane and Affinitor starting this week. I am fearful since this is my last shot at a harmone based treatment plan. I was told that if this doesn't work, I will need a chemo based treatment. Let me know how you are doing! I really hope it is working for you!

Not what you're looking for?

You may also like...

Afinitor and faslodex

Has anyone been on Afinitor and Fulvestrant/Faslodex I’m going to be starting in a couple weeks and...
KarenHale profile image

6 weeks on Afinitor

Hi ladies Well I’ve done over 6 weeks on my new meds...Afinitor and exemastane...no ulcers for...
Barbteeth profile image

verzenio or aromatase inhibitors

I was diagnosed in April 2017 at stage 4 breast cancer. Started on tamoxifen and then switched to...
Wolverine19 profile image

Starting Afinitor soon.

I’m about to begin Faslodex and Afinitor, which will be my 4th round of treatments in two years....
Topood profile image

CBD's a good allie for Afinitor and exemastane ?

I am on my 2nd week of Afinitor and Examastane and i havent had any side effects yet but the mouth...
JP1857 profile image

Moderation team

See all
Jslanovich profile image
JslanovichAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.