Friday, December 2, 2016

Next steps...

Just got home after spending all day at the surgeon's office. She was in an emergency surgery which kept running longer & being more complicated than expected. The surgeon isn't sure if the enlarged/shining area is a lymph node or something else and feels that a better CTscan of the area is needed to be positive of exact location, etc. I'm scheduled for that scan on Wednesday. After that, I am to see a gastroenterologist in her group that will do an endoscopic ultrasound with fine needle aspiration of the area. I don't have a date/time for this yet, but hopefully this would go ahead and tell us for sure if it is cancer, types of cells, etc. Then we will have to discuss actual surgery as needed based on the results of that and the location, etc.

During the waiting, I actually thought of a couple questions that I had forgotten to ask my oncologist when she talked to me Monday on the phone. Since we were in the same building, I went down to see if I could possibly ask her assistant, and she came out to talk to me. (This is just part of why I feel so thankful to have her in my corner) I was able to learn about our what our next steps would be medicine wise if it comes back like we think it will of being still estrogen positive cancer. It was a little hard to hear that she thinks moving out of the AI group of drugs that I've been on to a different treatment of a shot and pill combo each month would be the best way to proceed. The regimen she mentioned isn't traditional chemo, but it is still a bit harder than what I've been on so far. Regardless, knowledge is power, and it helps me to know what our next steps in that realm would be.  

I have to think back to April 2013 when I asked my oncologist how long people usually got from my current med, and she said months. At that time, I would have been thrilled to know that I would get 45 months out of it. I've had a good run, and if this med has run its course, she fully believes that we can get me back to a good place. I'm just not ready to see NED go away yet, but I may not have a choice for awhile. So, what I would ask for currently is that you please send good thoughts and prayers that everything is scheduled quickly and that if at all possible the outcome of the aspiration is that there is no more surgery needed (preferably that it is an anomaly & isn't cancer, but realistically, both drs so far seem to believe that my cancer returning is most probable from size, how it lit up on the scan, etc.).


  1. Nancy, the shot and pill discussed is surely Faslodex and Ibrance. I am on Faslodex only now, and have been for 10 months, and I find it FAR easier than the AI that I was on for 54 months.

    My onc says my mets have most certainly been there all along and that the AI finally failed after an extraordinarily long period of time. So like you, I moved from an AI after far longer than should be, to the shots of Faslodex each month. And horray! I do not even have to remember a pill each day (which I NEVER forgot).

    This new regimen, if necessary, will be a go for you for another 45 months. Talk to your onc about doing only Fasodex to start. I find it be completely SE free. Ibrance will knock your white counts down and I know you have LOTS more travel to do But even that is manageable. So far, Fasoldex alone has kicked my mets to the curb.

    We have lots more cheesecake to eat. We are not going anywhere.

    Love you, N.

  2. Nancy -- Yes, it is Faslodex and Ibrance. I have little to no side effects now; so, even just having to be in town at a set time each month is a little daunting to me as it will impact some of the things I have planned, but I guess that is what I get for planning so far out as a stageIVer ;) It is good to hear that you've tolerated Faslodex so well as she did say we will go to that alone if we aren't able to get new pathology info. I can always talk her about maybe just that as you mentioned.

  3. Many women move Faslodex by a week to 10 days from time to time. So far, I have only had to move mine twice and then only by a single day. I do Wednesdays and I find that is the day least likely to interfere with a travel schedule as it is mid-week. Being farther away from the weekend, it is also the day easiest to move up or back with the least change in regular schedule. Sometime all you need is a couple of days.

    1. That is good to hear! Thank you for alleviating some of my worries!