How can you tell if the Ibrance has stopped working?
I thank all of you again for your messages. It helps knowing others understand. You hate to tell your kids because they worry so much about me and so scared of what’s happening to me anyway. My husband is afraid as well and just doesn’t know what to say when I’m so depressed. He’s been by my side from the beginning.
Gosh, The Artist...so sad that you're feeling depressed. It's such a struggle...
In regard to your question, I think that there are a few answers.
One is obviously through scans. This is the definitive answer; really the only one that matters. Lots of folks choose (probably wisely) to do their best not to think about it in-between.
Another is the tumor markers. There's a lot of discussion here re: the accuracy and usefulness of this measure. I think "accuracy" and "usefulness" sometimes get conflated, i.e. large upticks in tumor markers (like in % terms) can indicate likely -- but not definite -- progression. My doc has said that she has patients whose markers increase by several hundred in one month. This might be cause for concern, e.g. move up the date for a scan. My tumor markers (CA 27-29..more accurate than CEA) often increase by 5 or 10 points, and I'm often freaking out. But no progression. I almost think it's cumulative, to a degree, when you don't switch treatment.
Re: "usefulness" of TM's, there are studies that show that tracking TM's does not increase survival. I don't doubt these. The only thing you can do with a tumor marker report is to decide whether to worry or celebrate. Neither would be especially well-founded. But in extreme cases, you can move up the date of a scan. I, personally, like to get the data every four weeks...
Another is pain/symptoms. I don't know where your mets are or how much trouble they cause you, but new pain or other symptoms, e.g. shortness of breath (clearly this can also be "just" stress) can indicate that Ibrance or whatever treatment has stopped working.
There was a discussion on this site a few months back, if memory serves (it rarely does anymore...) re: increasing ANC's being associated with treatment failure. I think a few of us looked at it closely and concluded that the conclusion was not accurate...I think the study actually showed that perhaps decreased dosage of Ibrance --- which would increase ANC's, and is often done for this purpose-- might actually lead to a higher rate of "failure" / progression than was indicated in other studies. Convoluted sentence, I'm sorry....let me know if you want me to take another shot at it! 
One other indicator that is not really discussed is LDH, on your lab reports. Apparently this measures something "thrown off" or produced by the cancer, so if it increases, it can indicate that your cancer is progressing. I had mets for a few years before I clued into this. So now I look at (and graph!) my LDH along with my TM's...
I do think the most important thing is to try to discern what's a real problem vs. not-- difficult as it might be. Either way, call the doc...but I'm literally scrunching up my face and shaking my head about how much time and peace of mind we sacrifice along the way. This disease is awful enough, without robbing us of any contentment even when things are actually fine/under control.
In a nutshell: I'd try not to worry (says easy; does hard!) until your next scan. But clearly if you have any new or more severe pain or other symptoms, call your doc. But every hour/day/week that you worry is time that you're giving away...
With love,
Lynn
Lynn thank you. I don't know what markers, LM and LDH and these other things are. I asked my dr once what was a marker and he said he didn't know.
Hi The-artist -
Hmmmm, re: the doc's response...sounds possibly dismissive to me since I'm quite certain that he knows what a tumor marker is (if he doesn't, you've got a whole different problem! ).
There are two common types of tumor markers (I'll use "TM")..CA 27-29 (which is sort of interchangeable with CA 13-15) and CEA. From what I'm told, the CA's are more accurate than the CEA's, although all three places I've gone measure both.
Here's where I get kind of out of my depth...I think they measure "antigens" which apparently are your body's response to the cancer, sort of like antibodies are your body's response to a bacterial infection. So if the cancer spreads, your body's response/antigens might increase. It's definitely not universally accurate, as noted in the various responses, but I just wanted to clarify for you.
LDH apparently measures something produced as healthy tissue is affected by the cancer. So, again, increases might indicate progression, or might not. But I know my doc considers all three as we decide when to schedule scans, e.g. if my markers are stable and I'm feeling good and don't want to do a scan, I can push it back....
I hope that helps and maybe gives you enough info to go back and re-ask that doc of yours!!
Take care,
Lynn
I am a bit distressed that your doctor has told you he does not know what tumor markers are! While my oncologist does not rely on them, she does use them to indicate the efficiency of the treatment plan. For example, my CA27-29 can go up or down by 20 points in any given month. But if it goes above a certain point, she order scans sooner rather than later. Right now, my Ibrance/Fulvestrant/Xgevia combo is going really well so she will not do scan again until May at least. I have not had to had them since November. I would ask again or maybe even find a new oncologist.
Hang in there beautiful lady. It is a never ending ride but stay strong. Sending healing thoughts and big hugs.
Hi Lynn.
I have 27-29. Inside My stomach lining and inside my rectum lining I have Mets. My numbers are going up. My oncologist is having me come for a blood test every 2 weeks instead of monthly. Thanks for your uplifting message.
And thanks for sharing your heart.
Happy Valentine’s Day to all. Sending love notes. Reenie
Oh, same to you, Reenie! That's my first V-day wish this year! 💜
And, gosh, I'm sorry about the TM's and frequent labs! I hope this is one of the many instances when they are inaccurate!
Be well,
Lynn
I think the only was is by a scan
I would say scans as they would show progression. My oncologist explained to me that as long as my scans stayed the same or hopefully improved all was well. If there is progression then it is into chemo.
My onc uses how I'm feeling and scans.
My Oncologist schedules a Catscan every 4 to 6 months to track the progress of the chemo. I just had my first scan fortunately good news
In my case, I had continued infections rocking my body after 18 months, mainly UTI's because my white blood count was so low. I had an abcess develop in my intestines, and had to be hospitalized. This was the indicator to my oncologist that the Ibrance had stopped working, and it was time to change meds. I was switched to Xeloda, and have been on it for 10 months.
When your oncologist says. \"Right side of skull has the most intense uptake\"...
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