Exemastane and Afinitor

[Barb5]

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

[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 in reply to barbarac76]

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

[barbarac76 in reply to Barb5]

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 in reply to barbarac76]

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

[barbarac76 in reply to Fradis2]

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 in reply to barbarac76]

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 in reply to Fradis2]

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

[Barb5 in reply to barbarac76]

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]

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]

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

[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 in reply to Kimr2081]

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]

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

[Barb5 in reply to Kimr2081]

🙏

[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 in reply to SpaLadyLisa]

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

[SpaLadyLisa in reply to Barb5]

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

[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!