Everolimus - Afinitor dosage

[Marieleb]

I have a quick question for anyone on Afinitor ( everolimus)... I started 10 days ago after Ibrance stopped working. I have noticed that whilst I have been given a 5mg dose the recommended dose is 10mg... Did anyone else start on 5mg? Many thanks.

[barbarac76]

Hi. I was on exemestane and Afinitor for two years. I started at 5mg. After one month, my oncologist increased my dose to 7.5mg, which caused many problems (many mouth sores, extremely elevated liver enzymes). She took me off 7.5 for a few weeks. I stayed on 5mg for a year, then she increased my dose to 7.5mg slowly (7.5 every third day, 5 the other two days until I was able to tolerate 7.5mg all three days) over the course of the year. Ultimately, I had to stop Afinitor because it was causing problems with the lining of my lungs. My oncologist told me that it is rare than anyone can tolerate 10mg of Afinitor. Also, when I started I got a 2nd opinion from Weill Cornell (I am treated at Memorial Sloan Kettering). The oncologist said their protocol is to start patients at 2.5mg.

Hope things go well for you with Afinitor. For me, it was the most difficult drug (regarding side effects), but it was extremely effective with the cancer.

[Marieleb in reply to barbarac76]

That is so helpful thanks. I read about mouth ulcer but have nothing so far. Will cross fingers.. what treatment are you under now?

[barbarac76 in reply to Marieleb]

I've been on Xeloda since mid-February. So far, so good. Mild side effects.

[Marieleb in reply to barbarac76]

Is that your second treatment?

[barbarac76 in reply to Marieleb]

No, my 4th. I was diagnosed in 2013.

1. Started with letrozole (ibrance wasn't available)

2. Then, Afinitor and Exemestane

3. Ten, Faslodex and ibrance

4. Now, Xeloda

I also had Zometa infusions for five years, then switched to Xgeva injections about one year ago. Both every three months.

What about you? What is your history of drugs?

[Marieleb in reply to barbarac76]

Sorry for all the questions but I am still mourning Ibrance ... Diagnosed stage 4 in July 18 ( hip and sternum Mets)... Started letrozole ,Ibrance , zoladex and zometa... PET in Oct showed good results, January was stable. April showed new hip Mets and activity in sternum... They chose to wait 2 months , new PET in June showed hip Mets tripled, sternum re hot and new one starting in vertebrae.. I had to wait 2 weeks while they considered me for trial but was told it had closed so started me on Afinitor and Exemastane 10 days ago... Feeling a bit down to be on my second line if treatment after only 1 year and after being told I had a good prognosis because bones Mets had been caught early...

[barbarac76 in reply to Marieleb]

I'm more than happy to respond to your questions. Feel free anytime. I understand what you're going through. I go to a dark place every time a treatment stops working, especially when I hear about success stories with others who have been on the same treatment. I only got one year from Letrozole. Hopefully, you'll get good results with Afinitor. And, you still have Faslodex as a treatment, as well as all the chemo treatments and radiation.

[Marieleb in reply to barbarac76]

Thank you so much...

[Barbteeth in reply to Marieleb]

Hi there

I’m wondering how you’re doing with the everolimus and exemastane

I’m just starting my second month of 10mg of everolimus...I was dreading the change as I coped very well on the Ibrance/letrazole combo

My main problem seems to be muscle weakness and no energy...I often walk down my road to the shop and as I live on a hill it’s good exercise...however I’m struggling to do this and now scared I can’t make it back home...same thing happened when I went to fetch my horse from the field...I thought I was going to collapse....-anyway I’m going to see my oncologist on Wednesday and request a lower dose...if she’s obstinate and wants me to carry on them I’ll just cut the tablets in half...I’m not living like this...may as well be dead...sorry for being so blunt!!

However on a positive note...I’m not having mouth ulcers and only occasional mild diarrhoea but that’s probably because I take codeine regularly...my skin very dry so I’ve bought some Elizabeth Arden 8 hour cream...miraculous stuff

Are you still on 5 mg dose?... and how are you feeling?

All the best

Barb xx

[Marieleb in reply to Barbteeth]

Hi Barb... Sadly that ship has sailed for me a while back... After 3 months PET showed progression...Moved on to Faslodex for 3 cycles but PET early Jan showed significant disease progression with new mets in spine and more worryingly the liver is now also affected ... I am now on Xeloda with new PET due mid March... Been warned that if this does not stop progression eithee they are running out of options and things could move very fast... I have not posted any updates because I don't want people to be disheartened when they read treatment they might be just about to start didn't work for some..Everyone is different but I know that the first thing I do when I get new treatment ( 4th one 9 months) is search it on this site and get comfort when people say they have been on it for months!

As far as everolimus is concerned it did make me feel quite rotten, bones ache and mouth ulcers and general tiredness...the worse one from the 4 I have has so far...

[Barbteeth in reply to Marieleb]

Oh I’m sorry to hear that the EE combination hasn’t worked...I do hope xeloda will do it’s job and get you stable...the whole things a nightmare and I try to be optimistic it it’s so hard to be

All the best

Barb xx

[Marieleb in reply to Barbteeth]

Yes... I am in a place now where I start with assumption that it will not work which obviously makes me feel partially guilty when it doesn't as I feel my negativity is responsible ...Self fulfilling prophecy and all that... Just can't win... Anyway keep going until I can't but the pain is really getting to me now, as it got to you a few months ago... How are you getting on with pain management?

[Barbteeth in reply to Marieleb]

Hi Marie

I struggle with pain all the time but thank goodness not at night...I sleep well apart from night sweats but in the whole scheme of things I’m not moaning about that

I started swimming last August and it’s so comforting to get in the water as the pain reduces and I feel ‘free’...almost can forget my pain and be just like the other people in the pool

I live on pain medication...try to stick to codeine/paracetamol with ibuprofen...if I miss a dose...the pain soon intensifies so I take it at regular intervals...at the beginning of my cancer journey I tried to be ‘brave’ and see if I could manage without meds but I realise now how stupid that was...I don’t want a medal for bravery...I want to reduce the pain and be comfortable

What pain medication do you take?

Make sure you’re prescribed an adequate dose...some people really like patches but I’m afraid I didn’t like how they made me feel but maybe they may suit you?

I wish you well

Barb xx

[Marieleb in reply to barbarac76]

Hello. This thread came up this morning as someone replied to it and I realised I have basically caught up with you treatment wise. Affinitor did not work, neither did Faslodex and I am half through Xeloda ... Are you still on it and if not what was your 5th line of treatment?

[barbarac76 in reply to Marieleb]

Hi. I am so very sorry to hear that Afinitor did not work for you. It's so disappointing and so frustrating. You described it well in a previous post - how a drug can work so well for one person (with the same type of breast cancer) and not another. Our bodies and our cancer are all so different.

What type of breast cancer do you have? And, when you say you are half through Xeloda, what do you mean? Also, has your doctor discussed Ribociclib with you. It's in the same class as Ibrance (CDK4/6 targeted therapy). Not sure if it would be effective since it's in the same class. I was planning to discuss this with my oncologist next week. I vaguely remember hearing that a different CDK4/6 inhibitor like Ribociclib or Verenzio might be effective after Ibrance, but not immediately following.

I'm still on Xeloda, but I really have no idea whether it is still working. My labs are good and I feel well, but I'll know one way or another when I have my PTscan next week. I'm not sure what follows Xeloda. There is another woman on the site (MacroMom), who is moving onto Taxol (a chemo drug) after Xeloda.

[Marieleb in reply to barbarac76]

I am ER+... De nuovo to bones in summer 18 ( sternum and hips) , gradually spreading futher to bones and eventually reaching liver at last PET.( Jan) ..Not sure of mutation as I am still waiting for results ( was told it will be done as part of pre-trial checks in June, then in Oct , only to be told in January they realised they did not have the right sample and new biopsy was needed). I started Xeloda on 15th January for 3 cycles... Was due PET in mid March to check ( as I have been having them every 3 months for last 18 months ) but I have just received an appointment for CT scan instead with no explanation....I am struggling with my medical team and no longer trust them to look out for me...Not ideal ...

Ibrance only worked for 6/7 months for me and in England you can only have inhibitor once...

[barbarac76 in reply to Marieleb]

It's awful when you can't trust your medical team. Hard to understand why a CTscan was ordered and and why they didn't discuss it with you first.

So frustrating about the biopsy. It's hard enough living with MBC. The very least we can expect is competence, efficiency, and trust from our medical team.

I'm sorry you're going through this.

[Marieleb in reply to barbarac76]

Turns out they made a mistake and it should have been a PET! Have you had your yet?

[barbarac76 in reply to Marieleb]

As frustrating as it is, glad to hear your team found their mistake. Is your PTscan scheduled for March?

I just had PET yesterday, but won't get results until next Monday (oncologist is away for the week). It's been 5 months since my last one. That's the longest I've gone between scans.

[Marieleb in reply to barbarac76]

Yes 13th March... I must admit I have lost trust in my medical team which makes it that much harder to deal with everything...

[Marieleb in reply to barbarac76]

Hope everything goes ok today. Will be thinking of you

[barbarac76 in reply to Marieleb]

Thank you. That was very kind of you. I'll keep you an update after I talk to my oncologist.

[Marieleb in reply to barbarac76]

All Ok?

[barbarac76 in reply to Marieleb]

On the whole - yes.

The Xeloda is doing what it's supposed to be doing on my ER+ HER2- cancer. No shrinkage, but stable in lungs, lymph nodes, and bones (the progression to my liver before Xeloda was resolved early on when I first started Xeloda last February; nothing new since).

Not sure about the Herceptin for my ER+ HER2+ cancer. The mass (that showed up on PET in September is less avid, but there is increased avidity in a left lymph node (this was confusing to me because this has never been reported in previous PETscans). Oncologist says we have to "wait and see", could be inflammation. "Wait and see" never seems to work in my favor.

Thanks for reaching out to me. I'm really hoping Xeloda works for you. I'll be thinking of you on the 13th.

[Marieleb in reply to barbarac76]

So glad to hear it... let's make the next 3 months stable!

[barbarac76 in reply to Marieleb]

Agree. And, may you get many, many more months of stability. You deserve a break. I feel for anyone with MBC, but especially for young mothers like you.

[LisaT23]

Hi,

I am on day 24 of Afinitor 5mg and exemestance. So far so good, I was also given dexamethasone to use 4 times a day to prevent mouth sores. My Onc said she likes to start with 5mg first, then she might increase later. She called it the lowest dose, but there is a 2.5 which she did not even mention. LOL I will see her again 7/29 after I have been on this combo for about 6 weeks.

How are you doing?

Lisa

[Marieleb in reply to LisaT23]

I had mouth wash too but to be honest I kept on forgetting to take it and feel fine so I am no longer taking it. First few days felt very rough ( flu like, extreme pain at tumour sites) but it has eased up ( or I adapted to it 😉)... I have appointments on Wednesday because it was booked anyway from when I was on Ibrance and I need my zometa infusion and zoladex injection... my medical team only issue Afinitor for 4 weeks at a time ( so I had to change my holiday! ☹️)... So Cycle 2 is on 31st and I will get a PET in end Sep to check ...What were you on before ?

[LisaT23 in reply to Marieleb]

Hi,

I did almost 2 years arimidex added xgeva near the end, followed by 16 months faslodex with ibrance with xgeva for most of the time. Afinitor and exemestance is my 3rd line since Dx with MBC to mediastenal lymph and bone. Sacrum, L3, T10, and now a spot on left hip.

I tried zometa but got a fever each time, then switched to xgeva but had ONJ issues. So that med was on and off. Held the faslodex and ibrance for a month for oral surgery and switched meds a cycle after due to rise in markers and spot on hip lighting up on PET.

Onc wanted me on the Afinitor/exemestance for at least a month before making me come back in. She will run markers and all, said that is a good time frame to see how I am doing. I did get a cough and she sent me for a chest x-ray about a week ago, but the x-ray was clear. Blood work last week was ok.

Can't believe they made you change your holiday.

Lisa

[veking65]

I've been taking 10mg from the very beginning. Tolerating it very well. No mouth sores even.

[Marieleb in reply to veking65]

Thanks for sharing. I am seeing medical team on Wednesday, I will ask them. How long have you been on it ?

[Sebina in reply to veking65]

Hi here

I’m wondering how you are doing with the Afinitor and Exemestan!

I’m about to start w 7,5 mg next week!

I'm so devastated that Xeloda stopped working after 10 months!

I'm so scared of side effects!

Thanks,

Sebina

[Fighteragain18]

Can I just ask how long you was on Ibrance??

[Marieleb in reply to Fighteragain18]

11 cycle I think (from Aug to June) but progression started after 9 cycle... First 3 was great ( PET showed residual activity on one site, other 3 inactive), 6th cycle PEt was stable...9th cycle PET showed a new site and increased activity... And at 10 the new site had tripled and another remote site was showing sign of Mets settling... So we moved on...But please don't be disheartened if you are on Ibrance. Many people here have been on it for years! It is totally normal to try to benchmark against others experience( I was the same) because the unknown is just too scary and the planning make us feel back in control... But I have started to move away from this now ( for my own sanity)... Cancer is just like an evil chameleon it adapts to our body, our surrounding , our personal history and experiences... Sometimes it wins , sometimes it doesn't but the more I advance in this journey the more I realise that, whilst getting insight from others is invaluable and provides much needed positive energy , the relationship with that uninvited guest is quite a personal one... So off course we all take comfort in hearing about the good news stories of people on our treatments staying progression free and get a slight twist in the stomach when we hear the same messaging once it has stopped working for us but the journey is a long one and the " what works for one doesn't always work for another " fits both way and every new treatment comes with a clean bill of cancer fighting credit from me! 😉

[Fighteragain18 in reply to Marieleb]

Totally get this

Xxxxx