Exemestane

[kduck]

Has anyone ever done exemestane alone? It’s my next line of treatment and any advice is greatly appreciated?

[Dianne417]

Hi, kduck! Until just recently, I was on Exemestane and Everolimus (Afinitor), but my medical team has me on a short break from the Everolimus, because my blood work is off and I have been developing side effects like acne. I will have scans next Sunday and we'll see how I'm doing. What is your concern about being on Everolimus?

Best,

Dianne

[kduck in reply to Dianne417]

I will be on exemestane only, not everolimus. I just want to know it’s side effects

[Barb5 in reply to kduck]

I was on exemestane like 8 years ago don’t remember any bad side effects was on it a few years stopped because it stopped working like they all do sooner or later personally I don’t think you will have any horrible side effects oh I remember I did gain a little weight Good luck to you remember everyone reacts a little differently

[kduck in reply to Barb5]

At the time you was on it where you mbc? Where were your Mets? I have bone and liver which bones are stable. What are you your current treatments?

[Rhwright12]

Kduck! I started Exemestane in December after 2 lesions to brain discovered. Lesions gone. No active disease right now. 2scans since December. All clear! 😀 I actually take Kadcyla which is Herceptin and some Exemestane with it. I have some mild fatigue the day of and day after. Other than that no major issues.

[PJBinMI]

I've been on Exemestane "alone" for over 3 1/2 years. Also on Xgeva as I have bone mets but I don't think that is your concern. I've been in constant treatment for MBC for a tad over 17 years and have alot of fatigue but I think that is more related to the length of time I've had this lousy cancer, than the specific treatment I am on right now. It's my third line of treatment, after Letrozole and then Faslodex. When I was first diagnosed meds like Affinitor and Ibrance had not been created yet and my introduction to them was a friend being on Affinitor either as a clinical trial or just after it became FDA approved. She developed severe lung issues and ended up dying as neither her onc nor pulmonologist connected it to the Affinitor and kept giving it to her while she was in the hospital. Then when I was on Ibrance for a few cycles, I developed breathing issues that my onc and pulm connected to the Ibrance and now I have permanant lung damage so I am definitely biased against those drugs. But I think both of those meds now have strong warnings about breathing issues and tell patients to contact their oncs ASAP if they have any trouble breathing.

[kduck in reply to PJBinMI]

My onc said he was going to add afinitor because of the side effects. I just wanted to know about the side effects of exemestane. I know you have been doing this more 16-17 years could you tell me what I should look out for or any side effects I need to be aware of that’s not right?

[Hidden]

Hi kduck I was on letrozole but it stopped working and so have been on exemestane alone for about a month. I did get side effects at first mainly nausea but the GPS gave me tablets for that. The breast cancer nurse said to change the time I took it and so changed to evenings and this helped. Had a nuclear scan today and see oncologist Wednesday for results. Worried as tumors are still growing and ct scan showed suspicious activity in lung and chest bones. So we will see. The anxiety, makes me ill but they are doing their best to care for us. Look after yourself.

[kduck in reply to Hidden]

Could you let me know how your scan goes on Wednesday, I will be praying for you. I’m on IV Chemo at the moment but my onc said this alone will be my next line of treatment. Have you ever tried Ibrance, Kisqali or verzonio before?

[Hidden in reply to kduck]

Thank you kduck. The only cancer meds I have been on are letrozole and exemestane. Diagnosed 18 months ago. 5 huge tumors i can feel are growing. Yes will let you know how it goe. Thank you for caring.

[kduck in reply to Hidden]

I hope they are shrinking, I have liver involvement but I’m on IV Chemo taxotere at the moment. I did letozole and falsodex already. There are more treatments options so don’t be alarmed. Where are tumors located

[Hidden in reply to kduck]

2 really large ones are in the left breast, so big that the oncologist said that if they start to come through the skin to let him know. 1 on clavicle and 2 in armpit. How do you feel on the chemo.? Hope you soon get it sorted.

[kduck in reply to Hidden]

I’m doing ok, just ready to get on something oral. I have two children that need me

[Hidden in reply to kduck]

Bless you. I feel your pain. Xx

[Sparky95]

I was on only Exemestane for 12 years. It was when I was being treated for stage 3 breast cancer. Now I’m back on it with Afinitor.

The side effect I have had with it is stiff joints.

[kduck in reply to Sparky95]

Where are your Mets

[Sparky95 in reply to kduck]

My mets started in the brachial plexus chest wall area along with nodes and spine. Now we are watching my lungs as they aren’t sure if what they are seeing on the scans are from the Everolimus or disease progression.

[Hidden]

Been on letrozole but stopped working now on exemestane 2 months . End of July to see if it works although it hasn't yet. Shocked this morning to see how big and fast tumors have grown. Don't think its worth. 2 huge tumors in breast. 1 in clavicle and 2 in armpit. I don't expect miracles but would like to carry on for a bit longer for family. Sorry but not having good day today as pain is getting to me. Hope all goes well with you.

[kduck in reply to Hidden]

I’m sorry it didn’t work for you! I hope they find something to control the spread! Do you know what will your next treatment be, because you have only done two there are more for er+