On Beyond Cancer

My life with metastatic breast cancer

Teaching session March 3, 2014

Filed under: Uncategorized — onbeyondcancer @ 11:59 am
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Earlier this week I had my Afinitor teaching session.  As I expected, there was a long list of potential side effects.  The most common side effects are mouth sores and the accompany loss of appetite, nausea, etc.  The mouth sores are a systemic problem, not a contact issue, so the crazy ideas I saw online about putting the pill in a marshmallow apparently won’t help.  (Don’t trust everything you read on the internet!)  She did tell me to call right away so they can prescribe special mouth washes to make the sores heal faster.  The serious side effects I have to watch out for are kidney infections and liver problems.  My doctor’s office will be doing regular blood tests (more often when I first get started) to check for the kidney and liver issues.  The nurse practitioner said that I was an ideal patient for this drug because other than cancer, I have few health problems.


Afinitor is available in 4 different doses;  I’ll be starting with the highest dose, but she told me to keep in mind that should the side effects be too difficult to manage they could (and often do) lower the dosage for this drug.  I expect it will be a bit like when I started on Xeloda – it took a few weeks to get the appropriate dose figured out.  I’ll start with a daily dose of 10mg.


The drug is very expensive so we are waiting to hear whether I’ll be able to get it at my usual pharmacy or if it will go through a specialty pharmacy and be delivered to Dr. T’s office.  Because many patients have to adjust their dosage, the pharmaceutical company is giving me a two week free sample, which will arrive at my house via UPS tomorrow.  The pharmaceutical company also has a program where the maximum out of pocket for patients after the insurance pays for the drug is $25 a month, so it will not be expensive for me, just for my insurance company.


4 Responses to “Teaching session”

  1. Aunt Amy Says:

    Give me a call if you need me. Sending lots of love.

  2. Glad you can get the medication. In the Netherlands it costs 3,300 euros/month for the 10mg/day dose. It is covered by our insurance system, but delivered through hospital’s pharmacy under a special regulation for expensive medicatiion.

    When Afinitor works, it works well for a longer time, so good luck with side effect management!

  3. Margie Says:

    Hope the mouth sores stay away. Let me know if I can do anything. Love, Mom

  4. Aunt Cindy Says:

    Thinking of you at this difficult time. You are always in my heart!

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