Afinitor/Everolimus 10 mgs

[rpeacock]

Has anyone taken this chemo pill? I did and my then had such poor kidney function, my number was 3.9 and normal is in the ones! Now it’s normal again at 1.8. Has anyone taken another chemo drug called Exemestane, 25 mgs?

[Hidden]

Hi rpeacock -

I'm so sorry about the issues you're having! I don't have experience with either of those treatments, but I've seen them on this board so I hope you get some helpful responses.

I'm queued up for Everolimus at some point, so I appreciate you sharing your experience with it...

Take care,

Lynn

[Barbteeth]

Hi there

I started everolimus 10 mg on January 1st this year...together with exemastane 25 mg

I requested a dose reduction after the first two months so now take 7.5 mg dose of everolimus

I didn’t have any of the expected mouth ulcers but recently had really awful cold sores which haven’t completely gone after 4 weeks

As far as I’m aware my kidneys are ok...my main problem is fatigue and anaemia so I don’t know if the fatigue is caused by the drugs or just that I’m anaemic...therefore I get breathless

I must admit I was actually expecting worse side effects after reading about them but I can function ok just not as well as I would like

Good luck

Barb xx

[barbarac76]

Hi.

I was on Afinitor and Exemestane at the same time. I never made it to 10mg of Afinitor.

I never had problems with my kidneys, but when my oncologist increased my Afinitor dose from 5mg to 7.5m (daily), my liver enzymes shot up so high, I had to stop taking Afinitor for several weeks to let my liver return to normal. I stayed on 5mg for one year, then gradually increased back to 7.5mg.

I remember my oncologist telling me that very few women tolerated 10mg, but several women on this site have done well on 10mg. As with all the drugs we take, each of us responds differently in terms of side effects and efficacy.

Have you and your oncologist considered reducing the dose of Afinitor? I think the lowest dose is 2.5mg.

[Filosofie]

I’ve been on Exemestane and Everolimus since November and last CT scan showed everything stable (liver and bone mets). I’ve been on 5mg Everolimus from the start as Onc thought that if it was working why risk more side effects. I haven’t had a problem with my kidneys. I do get mouth ulcers and have more fatigue. My main problem in these Covid days is that it has caused pneumonitis. I don’t have a problem breathing but I am in the shielded group (in UK) so can’t go out before end of June at the earliest.

[Barbteeth in reply to Filosofie]

Hi there

We’re quite similar with just starting everolimus and exemastane... I started January 1st. Good start to 2020!!...I didn’t like the 10 mg dose so now on 7.5 mg

I wish I had been started on 5mg...I’m in the UK as well so it appears that oncologists have different protocols to one another...I’ve never understood why the high doses of these drugs are given first when the side effects make us feel miserable

I only get an occasional tiny mouth ulcer so pleased about that as I was dreading it....my skin is drier and I’m very anaemic

Could be a lot worse...good luck with your treatment

I’m in Nottingham by the way and have had no info re Covid virus/shielding...I stay out of supermarkets but go in shops like Pharmacies or maybe pop in the bank or post office...I go for little walks and ride my horse on my own...my oncologist just said ‘be careful’ whatever that’s supposed to mean!

What symptoms of pneumonitis do you have?.. something else to worry about...I do get breathless walking up hills but my haemaglobin is low...9.3 so it could be that I suppose

Barb xx

[Filosofie in reply to Barbteeth]

Hi Barb. I don’t have any symptoms of pneumonitis. It was spotted on my last CT scan, looks like ground glass. I was given extensive lung function tests which were surprisingly good. Onc gave me the option of dropping the Everolimus at the beginning of lockdown but since my last treatment failed dramatically I decided to stick with it. He told me that both I and my husband should stay at home because if I catch the virus I’m a goner. I’m in Birmingham. The dental hospital here has been given over to blood tests (my only trips out) telephone consultations and drugs are couriered. Looking forward to normal service resuming. Take care x

[Selmac in reply to Barbteeth]

I've been on Afinitor and Aromasin for almost 3 years. Highest dose until they moved my Afinitor to 5mg 7 months ago. I get the sores in my head and around my mouth. No shortness of breath. I rinse as least twice daily with steroid mouthwash whether needed or not. It keeps them at bay. If you have being having kidney problems you're not drinking enough water. At least 60 oz per day. Water must be 60 oz. Thank God I've had no horrible side effects and I hope I can stay on it another 10 years. Wouldn't that be gtreat? Any more questions feel free to ask.

[Barbteeth in reply to Selmac]

Wow you have done well especially on the high dose...I hope I’ll be like you but I fear I won’t as last months blood test showed a big rise in markers

I wish you continued success on your current regime

Barb xx

[My3girls in reply to Filosofie]

If you don't mind can I ask how long you've had liver and bone mets?

[rpeacock in reply to My3girls]

I don’t have liver and bone Mets. Cancer is in my bones and head. Was diagnosed in May of 2018

[Stinsonmom]

Yes, I am currently on 5 mg of Afinitor’s generic form and 25 of Examestane. I started at 10 mg of Afinitor, but had some nasty side effects, including terrible mouth sores and “crazy pavement” in my lungs. Tough drug, but it has kept me stable for nine months.

[rpeacock in reply to Stinsonmom]

What is pavement in your lungs?

[Stinsonmom in reply to rpeacock]

It is a wacky term radiologists use to describe something they see in the lungs. In my case, it is a reaction to Afinitor. Uncommon reaction, but it happens.

[Retire617]

Yes about 5 years on both. Cut down from 10mg to 5mg early on as the side effects were too strong but I supplement that with medical marijuana and have been doing well for the last five years on this plan. Yes there are mouth sores and scalp eruptions headaches and nausea but now they are easier to deal with and not a regular problem. I was just discussing this with my oncologist telling him there is no pattern to any of the effects. Oh yes extremely dry skin and itchiness. I've been using Curel shower gel and lotion that you can only find on Amazon and that really helps. You didn't have any specific questions so I hope this covers some of them.

[rpeacock in reply to Retire617]

Where do you live?

[Lolli2020]

I have been on Afintor/Everolimus for 1 1/2 years, accompanied by Exemestane (hormone blocker). Afinitor was rough on me at first but things evened out. I've lost 40 pounds - most of it was 1 lb per week in the beginning and now I've lost 5 lbs since the first of the year. I haven't had any kidney problems - but have to watch how much NSAIDS I take. My last PET/MRI scans are showing some increase in activity in my iliac bones - so we are going to mix it up with a different line of treatment. I am now off Afinitor/Exemestane for 4 days. I'm hoping that food will start tasting normal again - but not enough that I gain the weight back - haha! Let me know if you have any more questions! ~Anita