Had EVERY side effect from Affintor (Everlimos)

[BorisCarloff]

After 3 longgggggggg months of Affintor I woke up 2 weeks ago and could barely take a deep breath. That's after 3 months of constant living on the toilette, nose bleeds, mouth sores, very high glucose levels, very high cholesterol levels, exhaustion, but not breathing was not an option. Had a fast CT scan that showed lung inflammation in both lungs. I know every drug comes with a downside but this had 101 downsides and I had them all. That being said, I am blessed to have had a no spread Pet Scan last week, which Affintor should take a bow, but I doubt I can go on it again as I need to breathe. :))) Anyone else???

[Best521]

Good grief where was your doctor while all this was happening? These were serious side effects. You should not have had to suffer through this many side effects. Sorry this happened to you but glad you have put the drug behind you.

[Kerryd22]

You missed out on the liver inflammation and anorexia so that’s good. I only lasted 10 months with those two side effects. I’m still stable about 7.5 years after dropping afinitor and going on with Exemestane. If you have lung inflammation I doubt you will stay with it but there’s no reason to change medication if you’re still stable.

[CTGirl1962 in reply to Kerryd22]

I think she has 101 reasons to stay OFF that medication!! LOL

🙏🏻🙏🏻🙏🏻☺️

[CTGirl1962]

I never would have stayed in it that long!! There are so many more meds available. You should never suffer like that again!! YOU are in control and always remember that. Talk to your doctor candidly and if there is a “next time”, demand a new therapy.

Good luck and I’m happy the Affinitor , at least, worked!!

🙏🏻🩵🩷💚

[Kerryd22 in reply to CTGirl1962]

When I was considering my options - Afinitor and Exemestane or just Exemestane - my oncologist said that Afinitor had a high drop out rate. It’s a long time ago so my memory could be wrong but I’m pretty sure she said about 40% of users opt out because of side effects. I must say that I’ve never read a post with so many side effects but some medications just don’t suit some people. There’s plenty more especially if you’re ER+ so onwards and upwards!

[CTGirl1962 in reply to Kerryd22]

Yes!! You have so many options!! Good luck and I’m praying for us all DAILY!! 🙏🏻🙏🏻🙏🏻

[LibraryGeek]

I also got fluid on the lung and this made me very breathless. I had high glucose levels as well and had to take the diabetes drug metformin which caused a dramatic loss in appetite so that I had to force myself to eat anything. I lost loads of weight but I had put so much on while on the hormone treatments, that was a bonus! I also got the beginnings of neuropathy in my feet. So, not sorry to leave this drug behind, even though I am now on IV chemotherapy. Hope your next treatment is kinder to you x

[Oberammergaux2]

Hi, I’m SO sorry you got hit with every option on the side effect menu!

I’ve been on Afinitor and Exemestane since about 2007. My HUGE debate with oncology is that they start pts on the “recommended” dose which for me was 10mg, it’s undoable at that high dose! I was dropped to 2.5mg. I even met with a rep from Novartis who dealt with Afinitor. No reasonable answer was given on why they aren’t promoting starting pts at LOW doses and working up to a tolerable dose. It makes no sense to me to start people on doses of any of these meds that leave them “failing” and dropping out. I’ve spoken with our cancer pharmacists about the fact that MDs are given side effects and ratios from studies but there doesn’t seem to be any follow up data with the effects pts are having after the meds are being routinely used out here in the real world. Every one of these meds have such debilitating potential and every pt reacts differently. Thank you for sharing your experience! Every bit of knowledge we can all gather from each other is vital. It’s hearing personal experiences that are so helpful to all of us.

I agree with others here, you are in charge! If your body says no to a drug than that should be the end of it. What works for one is not a basis for expecting it to be the right fit for someone else. Please take heart, try something else that may be better tolerated….don’t let this take the wind out of your sails. Hugs to you and all best wishes! Thanks again for posting

[13plus]

I didn’t have these issues at all, but the drug just clearly was not working at all after only about 4/5 months. I’m so sorry you’ve been suffering like this. Like others say, you have control. I do find it odd that you had all that going on and your doc was ok with it? It might be time to consider a second opinion. Use the need to change as an excuse to look elsewhere. Perhaps you like your doc and that’s ok but make sure to push for that balance of QOL going forwards .

I’m so glad the drug at least worked for you. Do you know what’s being suggested next?

[BorisCarloff in reply to 13plus]

Howdy...The doc told me at the start that this drug is not one that most patients stay on for a long time because of the SE and the lack of longevity. But I had just come off of very high liver enzymes from Kisquali and needed a drug with a different path, that would not effect my liver. So from the start it was not going to be a super star. The doctor was very concerned about all the side effects, but assured me they were all short lived UNTIL the lung inflammation and in 5 minutes of knowing that she discontinued the drug. All the SE have resoved after 14 days of being off except the lungs. I do not know what the next step is, as first my lungs need to calm down before I am on to the next. With all the yuk, (medical terminology) I am still blessed that it worked and the optomistic soul in me is thinking postive about the next hero

[13plus in reply to BorisCarloff]

My doc wasn’t too optimistic about working for me at all but we tried it anyway. I’ve also got liver mets so I can relate to the issue you had with levels. I’ve just started Enhertu (after 6 months on Xeloda). Still dealing with my liver But hopeful this one will do bring it back to a better place . I hope your lungs heal well with more time off

[awesome4ever]

I am so sorry about every thing you have gone through. Lung inflammation is definitely something that needs to be monitored with this drug. At first I hesitated to post my reply but in case there are ladies that are part of the board and Everolimus is suggested to them they need to know that some people myself included do exceptionally well on this drug. I am starting my 17th month of Everolimus and Exemestane and have regular scans every 3 months and there has been no radiological evidence of inflammation on my scans. I didn't have any real side effects except my glucose has creeped into the hyperglycemia range so as a precaution I take Metformin 250mg once per day and my fasting glucoses since starting have dropped back to normal ranges. We are only allowed Hgb A1C every 3 months so I'll get that checked again in November. Also this drug doesn't cause blood values such as neutrophils to drop like they do with the CDK 4/6 inhibitors. One of the reasons my oncologist thinks this is working well for me is that I have the mutation PIK3CA but due to my healthcare I'm not eligible for Piqray or the new Truqap. Everolimus works on the same PI3K/Akt/mTOR Pathway so for this I am grateful.

Regardless of my success I hate to hear about one of my fellow warriors struggling. I hope your next treatment choice is kinder to you. At least being in the USA you have many other drug options. Take care.