Is my oncologist holding out on me?

KristinSchwick · 06-27-2012, 03:29 PM

I'm in need of some advice- I'm trying to wrap my mind around what my oncologist is up to. My tumor markers are rising from 96 to 107 to 129, I might have alittle pain in my hip from an old met. According to his nurse, they want to try and stretch out each therapy as long as possible and avoid switching every couple months. This was I will get the most benefit from each therapy.

I'm struggling with this, because I had convinced myself that it was just a matter of time before we found "the one", now I have to accept that this may be as good as it gets. Torn and disappointed.

Please advice

tricia keegan · 06-27-2012, 03:36 PM

I'm sorry Kristin and cant really advise except to suggest asking for a scan if this combo is not working ask for another one?? I'm sure the other ladies will be on with more suggestions for you soon! xx

KaiM · 06-27-2012, 03:50 PM

Hi Kristin, it is ironic that you just posted this today as I just had this same conversation with my onc today. She told me the strategy is to stay on a treatment as long as possible to get the most mileage from it, then when it isn't working anymore we will change our treatment. So I believe that this is the standard of thinking for onc in the stage IV setting. I'm with you on hoping for my magic bullet treatment one day, but until that day I'm just happy to be feeling well right now. It is okay to be down and disappointed sometimes, in fact we'd be crazy if we weren't, but I try to stay positive and grateful for all the new drugs that are right around the corner and all the brave women before me who paved this road I am traveling. Do not lose heart, amazing new drugs are on the horizon!
Kai

yanyan · 06-27-2012, 04:05 PM

Hi Kristen ! Two months maybe be still too short to determine whether the treatment is working or not,especially given that your TM is slightly elevated. I would just wait and see and get another scan in 2 months, unless the TM continues to rise. Sometimes we have to take 2 steps backward in order to move 1 step forward. I hope this elevated TM is nothing to worry about for you !

chrisy · 06-27-2012, 07:52 PM

Hi Kristin,

I've also had my (rockstar) oncologist do that. Same reason as Kai said. Its sort of a balancing act, ride the wave as long as you can without losing control, then catch the next one. She kept me on TDM1 for several months after it looked like it was pooping out on me.

It doesn't preclude the next option maybe being the magic bullet. I don't think your inc is holding out, I think she is stretching out the benefit.

Jackie07 · 06-27-2012, 08:52 PM

I wondered if the TM elevation has anything to do with your May procedure to remove the ovaries. Maybe it will settle down after your body heals from that 'minor' surgery'?

T-DM1 and many other options are on the horizon. Oncologists are a unique bunch. I will never doubt their wisdom (HaHaHa! This came from a woman who'd constantly argued with her doctors...

Debbie L. · 06-28-2012, 08:55 AM

Kristin,

I hear your disappointment at the idea of viewing this from a different perspective. No one can say for certain that your "the one" is not out there, or that it will not appear there at some time in the future. No one knows, and no one can ever know, because we base our "knowing" on old information, by definition. This is especially true, I think, for HER2+ disease, because there is so much coming down the pipeline all the time.

It's a big adjustment in your thinking, to go from a short-term view to the longer-haul one, one that many on this list who have been living with stage IV breast cancer for many years have adopted. Only you can decide what perspective works best for you, and when (and if) to change that perspective. It's hard work, all this mental/emotional/spiritual stuff. To put it mildly. You will eventually sort it out, and how it sorts will be exactly the right way, FOR YOU. There's no rush to do the sorting (be patient with yourself). And like all things in this life, just when it seems to be settling, there will likely be something new popping up to be integrated in (and I don't mean new cancer popping up -- I mean new issues, new emotions, new thoughts, etc). No one can give you YOUR right answers/perspectives, but I think that when you talk about it (on this list or elsewhere), it's a big help in sorting out the answers for yourself.

For the long-haul perspective, I love Chris's wave analogy. I've also heard it described as a limited number of tools in a toolbox. More tools may be added as time goes on (and for HER2+ disease we could probably leave the "may" part out of that sentence) -- but still -- there are a limited number of tools. So (says this approach), it makes sense to get the most out of each tool (or set of tools), before discarding it and moving on to the next one -- because you don't want to run out of tools. That's where your onc is coming from, and probably where most oncs are coming from.

Just like everything else, there is no single right way to do this. For example, if you're on a treatment that's easy to tolerate and there seems to be a suggestion of progression (with no bothersome symptoms) -- you might be okay with hanging in with it for awhile, to make sure it's not working. Whereas if you're enduring a really nasty treatment (side-effect wise), and it seems to be failing, you might be quicker to drop that one and grab the next tool.

No answers, just a few thoughts. And sending lots of good thoughts to you.

Debbie Laxague