Confusion is Best Served Cold

I guess I didn’t really fully know what to expect when my oncology NP called with my tumor marker results, except my body has been telling me that more cancer is growing in there since about November. We did the PET-CT in December, and I guess it was a tad too soon to catch quite what is happening and now it is too soon to scan again. We can’t scan me every month. I might start to glow in the dark.

My results were 112 at my visit Friday. Here is a graph of my results so far as long as they have been tracked (and according to the data I have in my chart system).


Tumor markers aren’t something you can really compare to other people, they are measured against yourself. Increases are a sign your treatment may not be working. Steady (not changing) means that it could be working, markers going down are a good sign treatment is working. They aren’t 100% accurate, but they are used as a gauge to measure the effectiveness of your treatment as you move along.

Houston. We have a problem.

I go back next week to have my blood drawn and markers checked the day before I meet with my oncology team. We will meet and change course of treatment if the numbers are that high. If they jump back down, call the test a fluke, and we stick to Letrazole (Femara) – my gut says that probably isn’t what happened, the pain in my side agrees (because my side is talking to me?).

The quick discussion about options was another estrogen blocker with a support medication or a medical trial. I am curious what medical trials are on the table. My hopes for teaching my immune system to kill my cancer cells are on hold as long as I have osteonecrosis of the jaw. You can’t do immunology trials when you are on antibiotics long term. I am also slightly confused because I thought the plan was to jump to chemo and get me on HER2 agents (Perjeta and Herceptin). I feel like that Her2/nue issue must play a role in the crazy tumor growth going on.

My NP also verified, recent research shows Xgeva causes as much ONJ as Zometa. So both are likely off the table for me for now. They are going to chat with my oral surgeon who I met with today and pow wow. He verified my jaw hasn’t healed any, but I am not any worse. The 3 mm hole is still a hole (in my gums). He tried to wiggle the bone lose, but did not have luck. The situation there is that I wait and hope it heals, it could get worse, or someday when we think it is safe I get surgery (surgery can make the whole thing worse too, so you have to be careful).

Speaking of Houston I pulled the plug. I made an appointment at MD Anderson in Houston for a second opinion in February. This has nothing to do with love or trust for my oncologist. I just want another oncologist’s opinion on what they would do with my tiny lung nodule to skeletal tumors everywhere-ing, Her2/neu mutating, ONJ developing, Femara (possibly) failing self. Sometimes a few additional opinions help with peace of mind. I do think my oncologist is one of the best, so I need to go somewhere really good to get additional input.

I am working on our travel plans tonight.

self portrait

I was out painting a self portrait (from a bridal photo Mike picked) with friends when I got the news about my tumor markers being a tad bit high.


Author: Mandi

Share This Post On