Does diarrhea dissapate after your body gets used to a drug?????

[BorisCarloff]

Hi Ladies! Have bad, bad diarrhea on Affintor. Been on it one month. Does it get better as time goes by? Thanks so much

[Oberammergaux2]

Hi

I’ve been on Afinitor since 2008! I wasn’t able to take the 10mg “recommended” dose and haven’t found many others who could. I eventually ended up with 2.5mg along with 25mg of Exemestane. You may need to have your dose reduced and that’s okay. I’m in a personal fight with pharma and MDs who start pts on the highest dose instead of starting with the lowest dose and work up to the dose best tolerated.

Afinitor is a good drug. Watch for mouth issues and interactions with other meds (of any kind!)….make your pharmacist your best friend 🙂

Please reach out again if needed. 👍

[Canceristheworst in reply to Oberammergaux2]

I started on Afinitor three months ago when Ibrance/Letrozole combination stopped working for me (after about four years). I had terrible side effects including bad diarrhea on 10 mg and was reduced to 7.5 after the first few weeks. I am still having diarrhea, so going down to 5 mg to see if that helps with the side effects. I found that coating it in applesauce before taking helps with mouth sores and acid reflux. I take it at dinnertime, which also helps, and be sure to drink plenty of water. Having a banana right before bed also seems to help. Keep us posted!

[Oberammergaux2 in reply to Canceristheworst]

Hi

Great to hear your MD is being flexible with your dosage 👍 Yes, please eat something with the med.

Learned another trick….if you order empty gel capsules (size 2) from Amazon, the Afinitor 2.5mg fits right inside. I don’t remember if the 5mg is much larger, you may need to go up a size. Down the Afinitor goes to be absorbed in the stomach, avoiding any exposure to oral or esophagus tissue. I just started doing this so we’ll see how it goes. The diarrhea got better with time and dose (and my acupuncturist) but, yeah, realizing there’s no straight route back to a bathroom on a mini-golf course 😱 can be terrifying……darn those tiny windmills!

Watch your mouth for issues and make your dentist your BFF, see him/her often. Get some Peridex mouthwash ordered.

Avoid sun exposure.

Check for interactions with any other med that you have ordered, your pharmacist should also be a BFF. Afinitor (like other chemos) doesn’t like to play well with others.

Hang in there, it’s been a really good med for me. Afinitor has kept me vertical for a very long time while working, traveling and being a mom. Here’s hoping you soon get to the point where you just pop it down and go on about life’s normal stuff.

All the best to you….you've got this 💕

Please keep us posted!

[BorisCarloff in reply to Canceristheworst]

Thank you so very much. So great to have this sisterhood of support

[BorisCarloff in reply to Canceristheworst]

Merci!! Hope you are doing better as well!!

[TammyCross in reply to Oberammergaux2]

Someone who left the group a few months ago was on more than a personal crusade to get docs to start on the lowest dose. She had something more organized, therefore more effective than working one doctor at a time. I hope someone chimes in about what she was doing, which organization she was working through, so we can continue her efforts. I think it was BestBird...

[Iwasborntodothis in reply to TammyCross]

therightdose.org/

[TammyCross in reply to Iwasborntodothis]

Yes! Thank you. We should all support this. It isn't clear if they want members or supporters. It was Anne Loesser who co-founded it. They have had some impact on oncologists and at the FDA, but the pressure must be kept up. This is the kind of thing that the Patient Centered Dosing Initiative reports. It could help someone here:

meta-analysis of six randomized controlled studies (RCTs) provided data for low-dose chemotherapy versus conventional-dose chemotherapy for 838 cases and 833 cases, respectively. Chemotherapeutic agents included bleomycin, capecitabine, cisplatin, cyclophosphamide, docetaxel, doxorubicin, fluorouracil, oxaliplatin, tosedostat, vinblastine, and vincristine.

The analysis concluded that low-dose chemotherapy achieved the same desired potency as conventional-dose chemotherapy, with no differences in pooled Objective Response Rate (ORR) and a reduction in Severe Adverse Events (SAEs). ncbi.nlm.nih.gov/pmc/articl...