Just started Everolimus

[Suzie-Wong24]

Hi, anyone on Everolimus and how is it? Side effects and if it is working? Thanks.

[Silver126]

Hi! I tried this combo but unfortunately it didn’t work enough on my liver lesions. The oncologist told me it usually works very well, so I hope you’ll have good results. I found it was a tolerable treatment, no tiredness, no hair loss, good bloodwork results, but take care of your mouth because it can cause mucositis. I think they’ll suggest you a good mouthwash before starting.

[Suzie-Wong24 in reply to Silver126]

Thank you. I am sorry to hear that it didn't work for you. Much prayer. I have been on this combo a week so far. After just two days my bones stopped hurting. I am praying this is a good sign that it is working. Blood work next week ...so hopefully that will be good.

[13plus in reply to Suzie-Wong24]

Sounds like it may be working I may be starting this drug very soon too

[13plus in reply to Silver126]

I also may be starting this in a couple of weeks. But it is my liver lesions that need attention, so eek! I’m sorry to hear it didn’t work for yours. What are you on now? And how long did you try taking the Afinitor?

[Silver126 in reply to 13plus]

My treatment lasted two months. My oncologist wanted a PET scan very soon and it showed fast progession. I’m on Abraxane now, after 6 months on Caelyx. I hope it works for you!

[13plus in reply to Silver126]

Thank you for the insight. I’ve never heard of Caelyx. I’ll be getting early scans done soon, but I expect to have to change drugs . Were you on something else before Afinitor?

[Silver126 in reply to 13plus]

I was on Ribociclib + letrozole for a year and a half and then on Xeloda for about eight months. Caelyx is doxorubicin, it’s IV chemo with few side effects (no hair loss), but it worked only five months.

[13plus in reply to Silver126]

So you've had to have more chemo drugs than me, at least for this part of my cancer journey. Goes to show how divergent our paths can be, depending on other factors besides the basic make-up of the big C!

[Shafight]

I had a really terrible allergic reaction but it seems most do fine

[13plus in reply to Shafight]

How did your reaction show itself? I might have to start it very soon and my husband is away so I’d like to be prepared for all possibilities . I already had a bad painful reaction to a different drug while he was away several years ago and it was NO fun being alone!

[Shafight in reply to 13plus]

first, I don’t think my reaction is common. It started with a rash on my arms chest, stomach and back. It kept getting worse. Then I puffed up all over

[13plus in reply to Shafight]

Sounds alarming but yes hopefully it’s not a common reaction! Sorry you had to experience that

[Rorita]

Hi Suzie, just started this combo yesterday, fingers crossed 🤞 I am from Sydney Australia, is that your second line of treatment?

[Suzie-Wong24 in reply to Rorita]

Yes, this is my second line. I was on Ibranch for three years. I pray this new line of treatment works for years for all of us

[Ticket123]

Hello! I’m on day 4 of Everolimus and Exemestane. So far I get a bit tired in the afternoon. this is my second line of treatment.

[Rorita in reply to Ticket123]

Hi , what time you're taking your tablets?

[Ticket123 in reply to Rorita]

I’ve been taking them at 10 pm before bed. I would love to switch to earlier time but I know we are supposed to take it always at the same time. How about you?

[Rorita in reply to Ticket123]

I take it straight after dinner, I think before bed , it's a great idea

[Suzie-Wong24 in reply to Rorita]

I take them at 8:30PM

[Eliactida1955]

yes I was on it almost a year with aromasin too. It didn’t work and made me sick mostly nausea and no appetite . I lost weight and couldn’t really eat. They rested and my tumor marker went high about 30 points. Everyone is different so I hop it works for you. It was my second med after ibrance for 3 years. I wish you the best 🙏✝️

[Suzie-Wong24 in reply to Eliactida1955]

Thank you. I hope you find a combo that works for you. I was on Ibrance for three years. I had little side effects but it stopped working.

[Gibby21]

I took it for a very short time it combined with my cholesterol medicine and help to shut down my kidneys. I was on temporary dialysis for 2 1/2 three months, it also raised my blood sugar to the point of having to be in the hospital so I had a terrible experience with it. I hope yours is better. I have heard that people have a very good experience with.

[Suzie-Wong24 in reply to Gibby21]

Sorry to hear that and I pray you are much better. Thanks for replying.

[13plus in reply to Gibby21]

Wow, that was not a good experience for you! What are you on these days?

[Gibby21 in reply to 13plus]

I am on verzenio, which seems to be working. I’ve had some tumor shrinkage and I have remained stable and of course I get the flaxodex shot once a month.

[13plus in reply to Gibby21]

I’m so glad to hear the Verzenio/Faslodex combo is working for you now

[1711JPD]

Hi. I was on Afinitor (along with Exemestane) for only 4 months before developing a head to toe itchy, blistering rash. It was awful.

Was switched to Xeloda (kept the Exemestane) and so far it is fine. PET scan in May.

For Silver 126, I too have liver lesions. I have had liver ablation performed twice with excellent results. Perhaps this might be an option for you?

Best wishes to all.♥️♥️♥️

[Silver126 in reply to 1711JPD]

I had a small rash with Afinitor in my armpit, I think I was lucky reading your experience. They thought they could perform ablation when liver mets appeared because I only had two, but one is in a dangerous position. At the moment there are a few and small, they want to go on with systemic treatment and see what happens. What kind of ablation did you have? Termoablation? Thanks for your advice

[1711JPD in reply to Silver126]

Yes, thermo. There was one active lesion that couldnt be accessed because it was so small. Dr said we’d go back for it at a later date.

Best wishes.

[Guitarbella]

Hi Suzie-Wong, I started Afinitir & Examestane yesterday. It feels very unsettling waiting to see if any side effects develop. I am taking each day at a time & will follow this thread with interest. This is my 3rd line of treatment after Palbociclib & Letrazole for 21 months then 6 months of weekly Paclitaxel. I am in the UK. I wish you well with A&E x

[Suzie-Wong24]

Hi, I hope this combo works for you. Many blessings. Thanks for your response.