Afinitor side effects

[Whitaker]

I have been in treatment for breast cancer since 2006 and have done the drill - lumpectomy, lymph nodes removal, chemo, radiation, herceptin, Arimidex for six years… then in 2019 a mastectomy, more hormone blockers, and three years of various combinations with Ibrance, which has sadly stopped working. Started on aromatase and Afinitor 10 days ago and having trouble handling side effects— they hit me so hard and feel it’s not worth going on. The cancer has metastasized to my liver and a small area in my spine so don’t have a lot of options….does anyone in this wonderful community have advice? Thank you xo

[Silver126]

My second line after CDK4/6 was Xeloda, I had spread to liver. It lasted 7 months, Afinitor+ Exemestane came right after but it didn’t work for me. I didn’t have heavy side effects, though. Were you tested for PIK3CA mutation, HER2 low, or other mutations?

[Whitaker in reply to Silver126]

thank you! I had a liver biopsy today so they can test for those mutations. Did you have tests? I hear it’s an exciting new field.

[somogil]

I was put on Afinitor 10mg and Extemasane as 3rd line treatment after progression and new mets.I felt like I was dying after 3 months on this! My oncologist stopped treatment, put me on Prednisone 30mg

All symptoms cleared. Restarted Afinitor on 5mg...coping quite well...touch wood! Only had sore mouth once in 5 weeks.

[Whitaker in reply to somogil]

I felt like I was dying also! Asked my dr and she said she doubted I was —and probably thought I was being dramatic —but the side effects were awful and I couldn’t take Afinitor for more than 10 days. And I’ve been dealing with treatments from chemo to Ibrance/Faslodex since 2006. I was on 7.5 mg Afinitor and thinking the dose was too high. So glad you are feeling better and coping. You give me hope!

[somogil in reply to Whitaker]

😘😘😘

[Silver126]

I had a liver biopsy and BRCA test, which came out negative. No PIK3CA or HER2 low. My cancer stayed 90% ER 45% PR. but hormonal resistant. I then tried Caelyx which worked 5 months and now I’m on Abraxane, which is working well. Next steps could be Trodelvy or a trial after a genetic test such Foundation One. Let’s see…

[Whitaker in reply to Silver126]

thank you —this is a new world to me but it sounds promising!

[Kerryd22]

What are the side effects you’re having? I took Afinitor for ten months. I didn’t have a single mouth ulcer but I did have liver inflammation and anorexia plus a couple of other things that were quite small. The Exemestane side effects are similar to menopause but I’ve not had too many problems. I’ve been on Exemestane for seven years in total with stable disease.

Afinitor has a high drop out rate according to my oncologist mostly I think because of the mouth ulcers and the problems with eating due to the bitter taste I found it added to basically anything I ate or drank. I lost 30 kgs in the ten months but I had it to lose and I’ve found about 20 kgs again anyway.

As you have liver problems already you might be suffering with the inflammation but you’d know it because all the liver numbers will skyrocket over time.

[Whitaker in reply to Kerryd22]

Thank you, Kerry — you explained a lot. I haven’t had mouth ulcers, think the mouthwash has helped, but food tastes awful and doctor was most concerned about weight loss. I also have bronchiectasis and prone to lung infections, another side effect of Afinitor, so that’s a concern. My other issues have been extreme fatigue and very bad headaches. Some of my liver numbers have gone up and had a new biopsy yesterday—tissue was sent for genetic testing. I’m glad to be off Afinitor until I see my dr on Monday and we revaluate things. Still on Exemestane, which seems like other hormone blockers I’ve had over the years. Thank you again.