Best Of

@norah2024 - I too have rising tumor markers (very slow but steady), and my onc has brought up the possibility of a treatment change, however he says that tumor markers alone are not enough to make that change and that the tumor marker rise has to be backed up by scan evidence before one can assume that there is actual progression. I've been on Verzenio and Faslodex now for almost 2.5 years, and this past year I started to show some lesions on my liver that after a year have been determined to be mets. My onc thinks the tumor markers might be rising in correlation with the very slow growth of these liver mets. At this point we are continuing to watch and wait, and I am staying on the Verzenio and Faslodex. My onc (and me) would like to get as much advantage from the current treatment as possible. Like you, I've seen where many have been on these CDK4/6 drugs for many years, and I would like to get the same. I think that @cure-ious and @tougholdcrow have great advice here. I too would recommend a second opinion.

@norah2024 I think you should seek a second opinion. You can look at the data on the Kisqali website to see what the progression-free survival (PFS) is for your type of cancer, combination therapy, etc. There have been several trials and studies that track the efficacy of Kisqali over time. Of course your MO is worried about tumor markers rising, especially given your recent health crisis, and doesn't want things to get worse. But choosing the right path (with genomic testing, as cure-ious suggests, and good grasp of all available options) is important and this is an excellent time for a second opinion at the best cancer center you have access to. Your doctor should be supportive of this since the more information, the better.

@norah2024

I have been on Kisqali for 3.5 years, but will now be moving on as scans showed progression in 2 areas - thankfully still bone. I meet with MO Thursday to discuss what's next.

@cure-ious

What type of genomic testing does your MO order? I know that bone biopsies do not provide great info, as I had one at the time I became stage IV. Trying to look at the bright side - no more faslodex shots!

@lafish I'm over two years out from diagnosis and 20 mos on Kisqali. I decided at my last scan that I wasn't going to look at the radiologist's report. I was just tired of worrying about the reported details that turned out to be nothing. I know progression will happen eventually but there's a comforting thing called "conditional progression free survival" (cPFS) which means that the longer you are on the drug the greater the chance that you will have even longer without progressio. So, for example, if you've made it 12 months without progression you have a median cPFS of 40.5 months and if you make it 24 months you have a median cPFS of 53.6 months. The recent Ribanna study explains this if you want to know more.

@lafish Strangely enough, I don’t have a ton of scanxiety prior to tests; however, when I am getting ready to open the results in my patient portal, I have difficulty breathing and start to hyperventilate. That is the real moment of truth for me.

I pray your scans go well. As @norah2024 stated, tumor marker tests can be indicative for some people as to how things are going. I get both CA 15-3 and CA 27.29. They have both been within normal range following my first two treatments last year. However, I had minor progression last December and again in March of this year. Since I had started getting Signatera tests last October, the first of which was negative, I continued to get them with each PET scan. And, as you can see by my lengthy signature, my Signatera and PET results have been aligning. Since my recent PET was all clear, I am hoping my upcoming Signatera results are negative again. Has your doctor ordered a Signatera test for you?

I agree with @soldanella that it could in part be the Kisqali or just scanxiety that is causing loss of appetite. When I have a loss of appetite, it’s typically caused by a slight bug of some sort that’s going around. With all the other aches and pains I have from my medications, I’m never certain if it’s the medications or if I have some sort of bug.

I apologize for the long diatribe. I am busy watching my husband work on a simple fix to the dryer in our RV. However, it’s taking hours. We are planning a two week adventure starting next weekend. Can’t wait to get away for a while. Wishing everyone a great weekend.

Hugs, Pam 💗

@lafish I was on Kiskali and I also had a decrease in appetite. That said, the stress before each control scan is still present, but it's true that my markers have been good since the beginning of the year, so I'm a little more relaxed before my quarterly check-ups. During my first follow-up scans after the stage 4 diagnosis, I took steps to arrange my funeral and made contact for suicide assistance! (lol). That's how anxious I was. Two and a half years later, I no longer have these kinds of thoughts before check-ups, but still, it's never easy to wait for the results.
I hope you receive good news in two weeks. Best regards.