Wondering if I am progressing after 2 years on Ibrance

Hello sister warriors. I've had good results on Ibrance since 8/18 and watched my CA15 markers decline from 200 to stabilize around 30-32 for almost 9 months. My labs today showed an increase of the CAT15 from 32 to 36. I fully realize that the numbers were very good and this is not a doubling or tripling. However, since my numbers have been so stable, I am concerned. I agree with my doctor who says we will monitor these markers for my next 2 monthly lab tests. I have a CT and bone scan scheduled for June anyway. Has anyone seen this kind of incremental increase after prolonged stability and then seen it flatten again?

[SoCalLady]

When your markers are in the 1000's and go up and down by 500 is when you should worry. I would "die" for markers like yours.

[Hidden in reply to SoCalLady]

SoCal -- I hear you. I completely respect your reaction. I am sorry if I upset you. I am doing my best not to be neurotic. I just want to know if anyone else experienced this kind of trend. My doctor is not being alarmist. She just is aware that this is a unique trend for me.

[Hidden]

Hi Marthasvineyard -

I'm in a similar (not quite as good) situation and I've pondered some of the same questions. Here's my experience/thinking on this...

When I was dx with mets 5.25 years ago with one pretty large tumor in my T12, I think my CA27-29 had gone up to something like 78. After radiating the tumor, the markers came down to maybe 48. Several months later I had widespread bone mets, like too many to count, in I'll say virtually every bone/vertebrae, etc. I improved (lots of tumors still, but very low SUV, <2.0) for a year or so and then they've heated back up a bit, but not a lot. So I've remained mostly or entirely stable. *I say "mostly or entirely" because it is open to valid debate re: whether or not a couple of small new lesions detected 18 months ago were really new. The scan was on a new PET machine/new place, calibrated on "max brightness" apparently, etc., etc...So I did switch from Let+Pablo to Faslo + Pablo but might switch back at some point... ANYWAY...

Since that time, five years ago, my TM's have risen gradually, with small increases in most months, e.g. 1-10%, with a few months with down-ticks. They are currently at 150. So they've doubled over the course of five years all while my cancer has remained "stable".

Below is a graph/slide from a powerpoint I brought my doc through last fall that shows both markers and highlights some relevant events. ( When I say that I'm "That Patient", I think this gives an indication of what that really looks like! )

Here's my pet theory/question about this...From what I understand the markers measure something like an "antigen" (?) that is part of your bodies response to the tumors, not the actual tumor "material" floating around? If this is true, then is it possible that those antigens might sort of gradually/slowly build up in your system? I make this stuff up, but have thought a couple of times about posting here to see if anyone has had a similar experience...

Regrading your increase, I know you know that your numbers are very low, but everyone IS different, I remember being told that what's 100 in one person might be equal to alot more in another in terms of relationship to tumor burden. So, like you, I would historically have concerned about a 4 pt increase, i.e. about 12.5%? BUT, what I feel like I've learned, is that the small increases probably don't matter, even if they are a higher % than you're used to...

I hope that helps? But if ANYONE has an similar experience I would love to hear about it...e.g. gradual small increases... Take care! Lynn

[Hidden in reply to Hidden]

Oh, my ppt graph, in all it's glory, did not come through!! Apparently I don't know how to attach an image/jpg. That's probably a good thing!

[Hidden in reply to Hidden]

Lynn - I meant to ask: are you still on Ibrance?

[Hidden in reply to Hidden]

Yes, 125 for 5 years. Paired with Letrozole for 40 months (after a few months on LET only) and now 20 months paired with Faslo.

[Hidden in reply to Hidden]

Lynn - thank you! This is very thoughtful. You've articulated my thoughts and concerns very well. It seems shallow to worry about my markers when many folks have exponentially higher numbers. I am grateful you understand how I feel concerned given the previous pattern of stability for 9 months. You are so right: what is 100 in one person is not the same as 100 in another person. I sincerely hope I

Other than fatigue and, of course, bouts of anxiety, I like to think I am relatively ok. My oncologist said several years ago when my breast cancer reappeared after 10 years that it was "indolent." No one has ever used the word "lazy" about me, so I am more than happy if my cancer is lazy. It's been a long road with Stage 2 diagnosis in 2004, Stage 3 in 2014, and Stage 4 in 2018. It was very rough when the BC returned in 2014, as I thought I was outside the danger zone after 10 years. In a weird way, I was more surprised in 2014 than in 2018. I figured this SOB knows where I live so it was coming back some day. I just want to buy as much time as I can this time around, without putting myself through too much.

[Hidden in reply to Hidden]

So interesting! And so encouraging for you!!

Your cancer does seem to be truly "indolent"...Mine's been called the same at different points, but not always with great certainty. I've been on a somewhat slow path/flat trajectory, but yours is amazingly good!

I did have to look up that SAT word at first to be sure I really knew what it meant and when I came across the definition of "lazy" I also chuckled. In my mind indolent was more like an overdressed woman lounging on a chaise... : )

I do bristle a bit at the statement re: "your cancer is indolent" because that gives none of the credit to my body, it just implies that she (my body) has a weaker foe. That could be true and is almost certainly at least partly true, but I don't think they should just dismiss the potential contribution of physiology, immune system, etc. It makes me feel more powerful to think my body's fighting well. Plus, my sister was dx metastatic same time as I was (TNBC), doesn't take any meds/treatments (occasional surgery), and is currently NED. So did we both luck into lazy cancer or are our bodies somehow well-suited to fighting?

This is not to say that "I" take any credit for any advantage my body might have. Like most cancer-related things, that's mostly about luck, good or bad.

Anyway, here's one way I look at my cancer, and I think it is accurate: I've actually been metastatic since at least 2010, when first diagnosed Stage IIb/IIIa. It just took a while for that lazy lady (!) to take root elsewhere....So your body's been pretty successfully fighting this disease for 16 years, with some great help from the meds of course. Wow! Pat your body on the back!!!

Also, and I imagine you know this, the long intervals between your different diagnoses bode really well for you. I guess you're already seeing proof of that.

Re: your increased TM's...Mine went up 10% last month to reach record highs for both. So I shifted into gear engaging all of my superstitions, redoubling my efforts on slightly wacky "treatments"...FIR, fasting, "exercise", visualizing, etc., since I had def slacked off. Probably nonsense, but my feeling (vs. "thinking") is that if I can make the environment even a bit less friendly, I'll do it. With an indolent cancer, maybe these small changes can actually make a difference?

What I also do, and maybe this will help you, is that I worry less about having to possibly switch treatment again. If you do well on one treatment you're much more likely to do well on the next one. I have no illusions about living to 70 (I'm 58) but I've already exceeded my early, reasonable expectations.

Thanks for starting/engaging in this convo...It's very helpful to me as I continually try to get my head around this god-awful disease, in general, and mine specifically.

Take care! Please do let us know what the markers do next month, I'm hopeful that this was just a "blip"...

Lynn

[Hidden in reply to Hidden]

Lynn - your insights are so appreciated by me! Thank you very much.

I tend to think of my recent cancer as being more active since I was able to go 10 years of remission, but then it was only 4 years between my second diagnosis and the MBC diagnosis in 2018. If I have progression now, it would be only a 2 year gap. That's the kind of thinking that worries me. I will admit that I have been fondly teased about over thinking. It was a good attribute in my former career as an attorney, but I am not so sure it helps me now.

Having shared that anxiety of mine, I like your notion that I did well on prior medications so perhaps if I need to switch I may do well for a while. I am trying very had to follow the motto that I will cross that bridge when I get to it. But I worry about this sequence of the disease for me.

I know what you are saying about living to 70. I am 63 and have always been very active. However, my sister and I are well aware that our mother and 2 of her sisters died before 70. One aunt died at 59 of a stroke, the second died at 64 of a brain hemorrhage and my mother died of bladder cancer at 69. The 3 of them were loving, funny, supportive and great role models. OTOH, the remaining sister lived well into her 80's and she could be both nice and "meaner than a bag of snakes." I once saw a button that said, "The more you complain, the longer God lets you live." I thought that she could have worn that button.

Our daughter is only 23 and I really want to be there for as long as is reasonably possible.

[Hidden in reply to Hidden]

I'm very similar, i.e. analyzing (over-analyzing?) things to try to discern trends/predict the future! Probably also a habit formed when I was working.. But I do find it helpful...I think there ARE discernible patterns/trends and in my view any info is good/helpful, even if it's not what we'd prefer to know. Plus, trends are just trends/averages...you've already blown through lots of them!

And, gosh, I'm sorry about the premature deaths in your family...My parents are both in their late 80's, doing remarkably well, and yet my sister and I are both dying of BC! Go figure! And I have a son, 24, and daughter, 22, so I hear you re: wanting to be there for them as long as possible. In a more selfish way, I want to be HERE until after they are more "settled" so I can kick back and enjoy a period of stress-free (or stress-reduced...) living. That actually motivates me a lot...

[Nannymop]

Hi

Dx with metastatic cancer in dec 2017 to the bones had good response to ibrance combo for 27months markers were 28 to start and stayed stable until jan of this year going up just a few points each month only to 54 but my latest scan has shown liver progression so have been in shock so dont know how I feel about them now .starting new treatment but they are holding the anfinitor coz of virus . I wish you all the best in this crazy world we live in take care xx

[Hidden in reply to Nannymop]

I’m sorry you received this gut punch. Please keep me posted. You’re in my prayers

[Hidden in reply to Nannymop]

Nannymop, I'm so sorry! Not only about the progression but also about the hold up on the Afinitor!

And thank you for sharing your experience with the gradually increasing tumor markers...that's very helpful to me...

Please take care,

Lynn

[mariootsi in reply to Nannymop]

I'm praying for you!

[Sister3nkc in reply to Nannymop]

Praying for you Nanny! My markers have been steadily increasing also, from 19 to 50. And yes, although thats not sky high like some other's have experienced it's a change for me after 4 years of a very stable number.

Bless you. Keep us updated please.

[Nmartinez15]

Mine never been so high. But I was like 26 and now I am 36.

[Hidden in reply to Nmartinez15]

Hi Nmartinez15...That's very interesting...Would you mind telling me how extensive your mets are/where they are?

[Nmartinez15 in reply to Hidden]

Breast cancer stage 4 with met in my spine only on my T6.

[Hidden in reply to Nmartinez15]

Ah! Okay, that's helpful...Thanks so much!

[Buffwright]

I may be lucky that my onc didn’t do markers...until she did! Somehow a 27-29 CA was ordered in Nov and was at 60. Scans were mostly unchanged. She did another as a follow up in February and the marker was up to 90 followed by a PET that showed small amounts of progression. So after about 3.5 years on Ibrance, I’m now on Afinitor and exemestane.

[Hidden in reply to Buffwright]

I'm so sorry about the progression and treatment change! And thank you for sharing your history...So you had progression after a 50% increase in TM's...While that's not great news for me (100% increase), it's very helpful!

[Buffwright in reply to Hidden]

The next test was up to 120! But I understand that often happens with a change of meds.... ignorance was bliss!

[Buffwright]

The next test was up to 120! But I understand that often happens with a change of meds.... ignorance was bliss!

[Hidden]

My doctor doesn’t use markers so I’m not sure what it means but I’m sure some of the ladies here will know.

[13plus]

Don’t let yourself stress over it. That’s a very small difference. Mine has gone up and down a bit at different times but I’m stable by the scans. Go by how you feel

[Sister3nkc]

I have a similar trend going on. When I was initially diagnosed stage IV in February 2015 my tumor markers were 120. I know that's low compared to others but I had serious numerous mets to my left lung and pleural space and a lot of fluid in my pleural space. With ibrance/letrozole treatment the tumor markers dropped to below 20 and have been very stable for the first 4 years of treatment. The past year they have gradually crept up and every time they are checked they are higher. Now they are near 50. While that is so much lower than whet I see other people posting on here, it is still a change for me and a consistent trend of rising over the past 12 months. My WBC (2.0) and ANC (.58) is also dropping. The nurse practitioner suggested we lower the ibrance dose because of the lowered WBC count but with the tumor markers increasing I am reluctant to do that. Just don't want to do anything to give the cancer an upper hand.

I know the tumor markers are only one part of the picture. However, I watch all of my labs tests closely as we are our own best advocate.

Good luck to you!

[Hidden]

Hi, Yes, my number was down at 23 for four months, then crept up steadily over a few months till it reached 28. After that it dropped to 24, then down to 23. I have been told that a few points either way does not mean a significant change. Try not to think about it too much!

Best wishes

Bronwyn