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Afinitor

McMarty's picture
McMarty
Posts: 202
Joined: Nov 2012

Hi Everyone,

This is my first day on CSN. My first diagnosis was 2004 with a 2009 recurrance at my sternum and now many bone mets.

I am on Afinitor and having trouble with my blood sugar and attitude.

Do any of you take Afinitor/Exemestane combo platter?

camul's picture
camul
Posts: 2136
Joined: Dec 2010

one month ago. Today when I went to the doctor, I saw the results of my blood work from last week and my glucose is elevated. I live in a high altitude and have not noticed a difference, however, I have not actually gone up to a higher elevation since starting this one.
I do have a dry sore mouth and throat, am just getting over a bronchial infection, have started getting sores, and wake up with a headache most days, and spend a lot of time in the restroom, and my potassium level has dropped again. My nose is constantly running and I do not have much of an apatite (which I am kind of hoping will get rid of 20 lbs), and I am losing hair.

None of these side effects alone are too bad, however, when you put them all together, they become very unpleasant. I am hoping they will get better or that I will get use to them. I don't know of anyone else on here that is taking this combo.

Would love to hear how you are doing with it.

Carol

New Flower
Posts: 4140
Joined: Aug 2009

It is a very new drug. My oncologist is considering it for me in the future.
What medications have you been since 2009?
Best to you

McMarty's picture
McMarty
Posts: 202
Joined: Nov 2012

Hi!

In 2009 I started Tamoxifen for the first time and had some radiation to my sternum. That worked for maybe a year or so, then they tried Exemestane. That was a TOTAL failure for me. At Christmas 2011 I was a mess. My spine was totally invovled and many fractures had to be fixed. I started 6 rounds of FAC chemo. That did a great job - took my CA 15-3 numbers from 1150 to 125! Folloing FAC they did Faslodex. That may have worked for a minute or two :) Two months ago, my CA 15-3 was up to 740 and they changed me that to Afinitor/Exemestane. That combo has slowed the progression but has not stopped or reversed the progression.

Also, I have been on Zometa almost the whole time.

McMarty's picture
McMarty
Posts: 202
Joined: Nov 2012

Hi Carol,

I think I've been on this for 2 months. The sore throat has gone away, but the waking up with headaches has just started. I have been fortunate to not have much trouble with mouth sores, a few at first and then that went away. Oh and the spending time in the restroom has subsided too. So you can look forward to that :)

I am having a lot of trouble with blood sugar levels spiking. They have adjusted my Afinitor to half dose and the amount of insulin I have to take is crazy. It's just a lot to get used to.

The Afinitor has slowed progression, so that's good.

Thank you for answereing me! This stuff is so new, it's good to hear from someone who is on it too. Makes me feel so not alone :)

Marty

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