Affinitor exesthamane treatments experience

[Francesca10]

Please share if you have taken this combination

[Julie2233]

Hi, I was on it from September to December last year, unfortunately it didn’t work for me. But it does work for a lot of people.

Worst side effect for me were nasty mouth ulcers and permanently cracked lips. Oncologist gave me some amazing gel called GelClaire which really helped to heal and sooth the ulcers. Then I caught a really nasty cold which I think made the side effects worse. I was taken off the drug because of the cold for 3 weeks so I’m not sure if it was given enough time to work.

[Francesca10 in reply to Julie2233]

Thank you for your reply♥️

[Barbteeth]

Hi Francesca

I took this combo for five months but although I managed the side effects it didn’t work so I’m having faslodex injections

Don’t let me put you off as many ladies have done well on it for years

Do you know what dose you will have of Afinitor?... I started on 10 mg but felt tired so reduced to 7.5 mg which was better

Barb xx

[Filosofie]

I’ve been on this combination since last November after my 1st line treatment had failed to stop progression. It seems to be working for me as tumour markers have gone from >4000 to 485 and CT in February showed I was stable. Most dangerous SE of Everolimus is that it has caused inflammation of my lungs (not great timing) but the lung function tests were normal. I have been on 5mg from the start as Onc didn’t see any point in risking worse SEs if it is working. I get occasional mouth ulcers and quite a lot of fatigue. Other SEs I think are from Exemestane. I get painful spots round my neck and now on my face - making up from the embarrassing adolescence I missed when young. I also have problems with body temperature regulation. I’m freezing cold in the afternoon, despite the lovely weather we’re having here, and wake up at night with the sheets soaked in sweat. Lovely. I hope this combination works for you - might be worth asking about the Everolimus dose.

[Filosofie in reply to Filosofie]

Sorry, should have made it clear that Everolimus is the generic name. Mine comes from the Affinitor brand.

[ChrisVict]

Hi, I’m at this stage now and wondered after 4 months how are you coming along?

[Francesca10 in reply to ChrisVict]

It’s not a bad treatment-no side effects , whatever. However, I don’t think it’s working because my markers are climbing.

[ChrisVict in reply to Francesca10]

Sorry to hear that I don’t know about you but I think I have 1 more soft chemo option and then I’m not sure where I go.

Have you losr hair on this treatment?

[Francesca10]

No no hair loss but I am running lo grade fevers from it- doc says it happens with this combo!?

[ChrisVict]

Hi, I was on Affinitor and exestamane for 4 months. It was harsh I got mothsore but was able to control the rash I put steroid cream and I would get a break out here and there. My bone Mets had 50% reduction and some disappeared but I developed liver spots so had to get off. I was just trying to get the most run from it I’m now on Xeloda. Everyone reacts differently so wishing you a good run.