Everolimus Anyone???? All experiences welcome!! Thanks

[BorisCarloff]

about to start! Any intell or advise??

[Bella_mum]

hi!

I’ve been on it 2 weeks and no major issues so far, bit of a sore mouth today and upset tummy but hoping this won’t linger.

Are you taking exemestane as well?

[BorisCarloff in reply to Bella_mum]

thanks no just anastrozole.

[Jhshl512]

Hi. I’ve been on this drug for over a month now. Like you, I reached out to this forum for suggestions and advice. I am so thankful I did. A few of the lovely and knowledgeable ladies gave me this suggestion. Please order gelatin capsules from Amazon, size 0. Yes they come in sizes. You place the pill inside the gelatin capsule. This way, it never touches your mouth or throat. It dissolves in your stomach after 30 minutes. Also gelatin is great for your stomach. I reached out to my specialty pharmacist and he had no problem with it! I’ve have never had mouth sores or nausea! Best med I have been on so far! I take it in the morning with food. I also take exemestane at night with dinner. My ONLY complaint is a little constapation but I’ll take it. I hope you have good results!

Best of luck

Lori

[TeddyChowChow]

Definitely the gel caps! I've struggled a bit with mouth stuff on Everolimus the gel caps completely stopped my mouth ulcers. Also, TCP as a mouthwash, Difflam, Colgate Peroxyl have all helped. I'm currently off Everolimus due to getting mouth infections but I think the oncologist is not convinced the problem is Everolimus so I may go back on. It was doing really well with my tumour markers! I hope it goes really well for you.

[Warrior77]

I was on Everolimus for a while and had no trouble with it. My onc did have me use the mouth wash and I had no mouth sores. It says use it 4x per day, but I did 3x and was fine. You only use it for 6 weeks or so and then only if you need it. I didn’t need it so that was it. It has a pleasant minty taste so it wasn’t a chore. One thing, you say you are on Anastrozole still. Everilimus interacts with Anastrazole so you might want to check with the pharmacy on that. Exemestane has no interaction with Everilimus. The pharmacist where the Everilimus was dispensed told me that. I was on the highest dose of Anastrazole. He said it should be lowered or switch to Exemestane. Otherwise, I had no fatigue, nausea, bowel issues, etc. I did take the dose in the evening after dinner, so with food, so I think that helped.

Stay strong!

Juliana

[BorisCarloff]

thank u so much gals!!!!Ever since I was little I have had issues swallowing capsules. They get stuck in my throat:(((( so I sadly don’t think I can put the pill in gelatin capsule. But great idea

[Bella_mum in reply to BorisCarloff]

I put it in the gel capsule then dip it in yoghurt and continue to eat yoghurt or down lots of water after, I have trouble swallowing sometimes but this really helps 👍

Good luck !

[Pbsoup]

I have been on since October and it is working. Mouth sores are annoying but the steroid mouthwash helps. Otherwise I feel good. Some women get years out of it.

[Kerryd22]

I was on it for ten months with Exemestane. I didn’t use the mouth wash and I didn’t get ulcers but that is not a recommendation from me. It’s just what I didn’t do and it didn’t cause a problem. However I did become anorexic and I had liver inflammation which is rare. I lost at least 30kgs in ten months and towards the end it was not unusual to lose a kg a day. I didn’t feel ill with the liver inflammation but I was starting to look yellow and the liver numbers went sky high. I stopped Afinitor and have stayed on Exemestane alone since.

Afinitor trial results were that it doubled survival time over Exemestane alone.

My oncologist told me Afinitor has a high drop out rate and I think the food issues would be the reason for that.

I didn’t find it hard to take and I had weight to lose so that was okay. Hopefully you get a good long time out of it. I’ve been on it for the last 8 years out of 9 years since I was diagnosed de novo stage four in 2015.

[awesome4ever in reply to Kerryd22]

Hi Kerry. i wonder if you might be able to share the article around Afinitor& Exemestane and the PFS as 18 months? No worries if you don't have it readily available. Thx.

[Kerryd22 in reply to awesome4ever]

I’ll have a look for it. It was on an article about PFS for a couple of other drugs.

[Kerryd22 in reply to awesome4ever]

I haven't found it yet. If I don't find it I'll modify my original response because I hate unproven information! I did find this - jhoponline.com/special-issu...

It's actually not really great news because standard of care now is an AI with a CDK. I didn't have a CDK as I was expected to start a trial for something else (Verzenio as it turned out) and I could only have a basic AI which was Letrazole. I also only had bone mets and the above article stated that some patients had mets in liver and lung. It could explain why I had ten months PFS with both drugs and continued PFS without Afinitor. To be fair nobody knows why that's happened except for the obvious answer that my cancer hasn't mutated yet. Or if it has it's not been significant enough to elude the AI.

[Kerryd22 in reply to awesome4ever]

I hate statistics! This article says Everolimus is best used as the third line but they also noted that the CDK drugs were generally used after Everolimus in the data available to them. ncbi.nlm.nih.gov/pmc/articl...

In any event they say that Everolimus appears useful, but under utilised and it has a high drop out rate. Over 80% of patients experienced progression meaning it didn't work well or there were adverse events, in my case, liver inflammation.

They put Exemestane PFS at 3.9 months and Exemestane with Afinitor at double that. I only took Afinitor for 10 months so your report of 12+ months is very positive. I don't recall seeing other posts that have reported that kind of longevity but then again I have been on Exemestane alone for 7+ years and I know a fellow traveller who has been on Letrazole alone for 10+ years. It's like they say 'there's lies and damned lies and statistics!!' Okay that was said in 1895 about proportional representation but I don't think much has changed. We have proportional representational voting and the results that can be thrown up are not understandable quite often.

I'm not saying the statistics are wrong but no matter how hard they try to remove various anomolies, they don't apply to us as individuals. I can't remember if I read that here or on another site but the poster's husband is a statistician and he explained to her why the statistics don't mean much to us individually. And as hard as they work to remove anomolies that doesn't make the result more reliable as more information might assist. Or it might not.

[awesome4ever in reply to Kerryd22]

Thanks for this Kerry. Yes overall statistics have to be taken with a grain of salt that's for sure. I never get swayed by them but it energizes me when I past the threshold that they give. It's like it lights a fire under me to prove them wrong I guess. My oncologist has also said that now that I've passed the 1 year mark on the drug, it bodes well according to her talks with fellow oncologists who treat advanced renal cell carcinoma to which was the initial use of this drug. Of course we are all different....you doing well on Exemestane alone for that long period is testimony to that. I hope you continue to do well for many more years. Onward. Take care.

[Kerryd22 in reply to awesome4ever]

I still haven’t found the original report about Everolimus plus Exemestane that convinced me to try Afinitor but I did find this -

‘The everolimus group had significantly longer PFS compared with the placebo group (11.50 vs 4.07 months, respectively; hazard ratio [HR] = 0.39; 95% CI, 0.25-0.62). Median PFS remained longer with everolimus versus placebo, regardless of whether chemotherapy was included with the prior adjuvant hormonal therapy.’

onclive.com/view/subgroup-a...

[awesome4ever]

Hi BorisCarloff. I have been taking Everolimus and Exemestane for just over a year with no current side effects. I originally shared a previous post about avoiding the mouth sores by putting the tablet into a gelatin capsule before swallowing. With doing that the actual drug doesn't get absorbed into my upper GI tract and therefore avoid the mouth sores and the other GI issues. I see though that you posted having issues around swallowing capsules. I get scans(CT & Bone Scan) every 3 months and my resent scan last week shows I remain stable so I hope to continue on this regime for a long time. I did originally experience some GI issues but that went away once I dropped the Everolimus dose down to 7.5mg. Good luck.

By the way what was your first line of treatment and how long were you able to stay on it?

[BorisCarloff in reply to awesome4ever]

Hi! I have been on Anastrozole for 15 months. Last March Kisquali 600 mg was added. After a month on Kisquali I felt great.. no side effects BUT liver enzymes shot up. Coincidentally I also got Covid for the very first time so we don’t really know it’s a kisqali raise my liver enzymes are the combination of Kisquali and getting Covid raised them. The oncologist now switched me to Everolimus with hopes that it will not affect my liver enzymes.. I did have a great experience with Kisquali not counting the liver

I do have a little fear factor about going on everolimus with so many side effects!!!! Thank u so much

[awesome4ever in reply to BorisCarloff]

Thanks for clarifying your MBC journey so far. I'm wondering why your oncologist didn't (after taking you off Kisqali to let your liver enzymes get back to more normal) not decide to start you on a lower dose of Kisqali and or switch you to another CDK 4/6 inhibitor to see how you respond rather than switch you to a different drug category altogether?

Regardless Everolimus and Exemestane has been so far a great 2nd line for me. I had previously been on Ibrance and Femara for 5 years. My body seems to tolerate drugs with minimal side effects so I am lucky.

However may I say to you that my motto is to go into each treatment change with positive thoughts that it will work for me. Cancer drugs in particular come with a long list of side effects but then again so do most drugs for other things. Take them with a grain of salt. Take note of what your oncologist advises you about and stay away from Dr. Google. Your oncologist will be monitoring you and the old saying I use is " worry when there is something to worry about, otherwise you will be paralyzed with stress about the what-if's and in reality what will happen will happen regardless....stressing yourself only hurts you."

Take a deep breath and move forward with your next treatment. Hopefully you will have minimal side effects and it will help to kick your cancer to the curb. Take care.

[BorisCarloff in reply to awesome4ever]

I LOVE you! You are awesome forever The ONC waited until my enzymes were normal, then lowered the dose to 400 and tried again. After taking the lower dose after 3 days, I happened to have blood tests for my yearly physical and we were shocked that the liver enzymes shot up after just 3 days. We waited 3 weeks, just took another blood test and although the enzymes are heading downward they still are no where near normal. She was about to perscribe a different CDK, but when the enzymes were still elevated she said she couldn't. Had they beed normal she was going to try being creative with a different CDK scheduale but the rest is liver history. I have a really healthy liver so this is all drug related. I've had zero other side effects.

Adore your advise and I will take it to heart.

xx

[Oberammergaux2]

The capsule idea is wonderful! Please let your dentist know you’ll be on this med and increase the number of check ups. My DDS was a dream!

[Oberammergaux2]

hi….marathon Afinitor here. I have been on Afinitor and exemestane since 2008. I have had three separate instances each of one small liver Met treated with gamma radiation. They stopped my Afinitor last November. My latest scan shows three larger mets to liver since being off of it. It works and I am about to do battle to get restarted. I originally started on 10mg. (Rough), dropped to 7.5 and the was on 2.5mg for a few years.

Please try the gel caps, it’s a great idea and anything to keep mouth issues at bay is wonderful. Be aware to avoid sun exposure and get to know your pharmacist! Afinitor has over 400 drug interactions listed so run everything past your pharmacist.