Any experience with Exemestane or Everolimus?

[CincinnatiExperience]

Hi All,

I recently had progression while I was on Trodelvy, so I am being switched to the above drugs. If anyone has experience with these, please share. Thanks!

Anne (in Cincinnati)

[MyMiracle13]

Hi. I am now on Piqray but previous to that I was on Everolimus and Exemestane. I don’t know if I was the only one who experienced it but the side effect I had was pimples on my face. I am 64 years old so it was embarrassing that at my age, I had pimples ha ha. Now that I off those two meds, no more pimples.

[13plus in reply to MyMiracle13]

I'm about to start Everolimus too. How long did you take it for, and how quickly did your pimples appear?

[Kerryd22]

I started both in about July 2016. The Afinitor caused me a problem that couldn’t be overcome although I didn’t try a lower dosage but after ten months with no progression it was decided I’d stop that and just stay with the Exemestane. I’m still on it and still stable.

Afinitor does cause problems with food and I developed anorexia as everything tasted bitter and I didn’t want to eat or drink. I lost 30kgs but I did have it to lose. The mouth ulcers affect 60% of patients but it didn’t affect me even though I turned nothing to avoid it. Liver inflammation is listed as rare or very rare, I can’t remember which but it did affect me. I found the drugs easy to tolerate and the food issue didn’t worry me which is why it was deemed to be anorexia. I found my lost weight once I stopped Afinitor.

And most importantly it worked well for me and hopefully it does for you too!

All the best

Kerry

[13plus in reply to Kerryd22]

I'm about to start Everolimus too. I'm curious if this was your first line of treatment for mets, or if you had taken other estrogen-blockers before exemestane (since your mets dx)? I don't really have weight to lose so I hope the food taste issue does not come up for me! I also have liver mets so hearing about your liver inflammation is a concern now. How did having an inflamed liver present itself? Sorry about all the questions but this would be really helpful to me to learn more

[Kerryd22 in reply to 13plus]

No I had Letrazole first but it did nothing to stop progression so then I had radiation and six months of Abraxane. Then I had Afinitor and Aromasin. The liver inflammation showed up in my liver numbers which went through the roof over ten months until the doctor decided it was unsustainable so rather than lowering the Afinitor dose (I was on 10mg) they dropped it altogether. And as it wasn’t due to progression I stayed on Exemestane and I have been told that my last scan although called ‘stable’ shows some regression and the breast tumour is not detected now so it’s under 5mm apparently. It was 20 mm at the maximum from memory. I’ve completed my 7th year on Exemestane all up.

Liver inflammation is said to be exceedingly rare so you are unlikely to have to worry about it but you’ll know soon enough.

I was deemed to be anorexic as I wasn’t choosing to eat daily. I ate a piece of rump steak every second day but I could probably have found something to eat if I’d been more motivated. Doctors suggested Sustagen at the end when it became apparent how badly my vitamin and mineral levels were tanking and I could tolerate that but once I stopped the Afinitor everything returned to normal physically and mentally.

I’ve noticed that some people are stopping both drugs when they find they can’t tolerate the Afinitor but I don’t really know why. I haven’t regretted the doctors option to stay the course until I get genuine progression. I did have progression in a node in March but a follow up scan in May showed that node had halved in size so it’s been deemed to be okay to stay on Exemestane for another six months.

All the best

Kerry

[13plus in reply to Kerryd22]

Thank you for all that, it really helps to get a better picture of possible scenarios. I love food but I can see how a drug can give you no motivation to eat. My onc must be a bit worried about that because she said, I think you're thinner than last time (I just lost a bit of pandemic pudge) but I don't want you losing any more weight! (Not her typical-style comment regarding weight either).

Yes it is great that your doctor wanted to push the time boundaries with at least some of what you were already taking before you switched it all! I agree, we need all the mileage we can get out of these drugs, and it does sometimes seem that others doctors are too anxious to switch everything too fast. I hope your long ride on Exemestane carries on a good bit longer!

[Contrarielle]

Hi, exemestane worked for ages for me and probably would have worked even longer if I had everolimus. Only annoying side effects were stiff joints mainly finger joints in morning and vaginally dryness. Hopefully you tolerate it brilliantly 😊

[blacksuz]

I am on them both and get bad face rash like hives which itch. I take 10mg antihistamine daily which helps reduce it considerably.

Also get bouts of fatigue so take melatonin at night to get good a good sleep. Also good for cancer.

Best

Dawn

[13plus in reply to blacksuz]

May I ask what dose everolimus you're on, and how long you've been on it?

[blacksuz in reply to 13plus]

5mg and 4 months on Evorlimus

[PJBinMI]

I was on Exemestane and found it easy to be on. It was my third hormonal, after almost five years on Letrozole and over 9 years on fulvestrant. I hope you do well, too!

[13plus in reply to PJBinMI]

Hi, at what point in your treatment of these particular drugs did you get your mets dx? I'm curious because I took Arimidex and Tamoxifen before a "recurrence" on the chest wall post-mastectomy (that actually was a mix of cancerous and benign). Then I took Letrozole successfully for about 5/6 years before I got my first bone met.

Now I'm about to start Everolimus and Tamoxifen (suggested by 2 hospitals) after my recent stint on a trial (iBrance/LynparzaFaslodex) failed

[Colacancer]

Exemestan has been my main drug . Still trying to find the sweet spot with Ibrance. I find it to be the least of side effects. Not sure about if it's working my first CT is next week. Wish me luck. Good luck to you

Gods blessings

Nichola

[13plus in reply to Colacancer]

Good luck with the scans! I was on iBrance for nearly 3 years

[Suzie-Wong24]

hi, the combo made my liver Enzymes go up so the dr is taking me off and on to another treatment plan. I pray it works better foe you

[Kerryd22 in reply to Suzie-Wong24]

that happened to me too but I just stopped the afinitor and I’ve been stable for six years + on everolimus. I’ll change only when I have progression. I’ve actually had regression according to my last scan

[ChrisVict in reply to Kerryd22]

Are everolimus and Affinitor the same was it the exemestane you were referring to. I was on the combo and had same thing but I thought it was Affinitor that rose my liver enzymes

[Kerryd22 in reply to ChrisVict]

sorry for the confusion! I just noticed the error 🤯

[13plus in reply to Suzie-Wong24]

I'm interested to know how long it took for the liver enzymes to go up? I've already got liver mets but my liver function appears to be good. I'm about to take the Everolimus

[Suzie-Wong24 in reply to 13plus]

Hi, it took only two weeks before my liver enzymes went up.

[13plus in reply to Suzie-Wong24]

That was first. Thank you for sharing

[Kerryd22]

Everolimus is Afinitor and yes it is the drug that affected the liver in my case. Exemestane is Aromasin.

[Cowgirl1951]

I took Exemestane and Zometa for 7 years with no side effects.

[CincinnatiExperience]

Thanks for all of the replies and discussion!