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Ca 27 29 just increased

Rxshell profile image
13 Replies

I am new here. I am advocate for my wife. Diagnosed over 30 years ago. Recurrence two years ago. Benn on ibrance 125 and letrazole for two years. Stable until last week when ca27-29 rose from 44 to 50. Dr. Wants pet and cat scan scheduled this Wednesday. Does anyone have similar story ? If taken off ibrance, what was next step? Thanx

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Rxshell profile image
Rxshell
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13 Replies

Pay closer attention to scan results than numbers. Next option depends on where Mets are, etc. I was switched from letrozole to faslodex. Still on Ibrance. Is your wife up to posting? This is a great group here. Lots of heartfelt support. Good luck.

Barbteeth profile image
Barbteeth

Hello

Your wife is the first lady I’ve come across to have a recurrence longer than mine..I was diagnosed originally 24 years ago

My markers have fluctuated recently but my oncologist doesn’t seem too worried and many ladies on this site have had similar increases in markers..apparently some oncologists don’t even use them because of this. I’m taking the same drugs as your wife

There are lots of treatments available and I tell myself this just in case the one I’m taking stops working

Barb xx

1998withStage4 profile image
1998withStage4

Having a 6 point rise in tumor markers is usually not a big deal. It’s the trend over time you want to look at. I’ve known people whose markers shot up to 400+ and it was just a problem with the fact that the marker was reacting to something other than cancer. I’m a bit surprised that the oncologist recommended scans with such a modest marker uptake. Your wife must have had other symptoms of progression or the doctor just wanted to see how well the current treatment is working.

PJBinMI profile image
PJBinMI

My onc told me a long time ago that tumor markers, such as the CA27-29, are "not precise." The sound more precise than they are since they are numbers! I am considered an "exceptional responder" as I've been living with mbc for nearly fifteen years. My onc recently retired but she had alot of experience and wisdom. She told me she pays most attention to how we feel, then scans and TMs only a distant third. During my first long period of stability, the CA27-29 bounced around alot, within a range of about 50 points. I've also been to several bc and mbc conferences and learned that things besides the cancer can have an impact on TMs and that some oncs don't use them at all because they are not dependable and can raise patient (and family!) anxiety needlessly. Some oncs only use them with patients who have bone mets only as bone mets can be hard to keep track of as healing bone mets and progressing bone mets can look alot alike on scans. Your wife has some things going for her! Long periods of time between first diagnosis and mets diagnosis usually mean a fairly non-aggressive cancer. And a good response to hormonal treatment, like your wife has had, is also very hopeful! The one suggestion I generally make to those of us with mbc is to see an onc who specializes in bc. The top cancer centers in the US are those designated "Comprehensive Cancer Centers," by the National Cancer Institute and listed on that website, though it can take a bit of hunting to find the list. They have oncs who see only bc patients plus do research related to bc. I got an appt within ten days when my local onc called to refer me for a second opinion. My insurance paid all but the usual office visit co-pay, and it was well worth the trip. As she talked with us, I could feel my husband and grown daughter relaxing and becoming less scared for me. And when she did the breast exam, it felt like she had x-rays in her finger tips, unlike any exam I'd ever had before. Your wife also had you! Having a supportive husband means alot and not everybody has that! I have been really fortunate to have a great husband and great family. Good luck to you both. You have alot to be hopeful about.

Rxshell profile image
Rxshell in reply toPJBinMI

Thanks for the input. Scans stable. Got results yesterday am. Was of course nerve racking waiting the one day for results.

PJBinMI profile image
PJBinMI

Another infra-red product is something called Anodyne that is used for diabetic neuropathy. My brother heard about it at the support group for diabetes that he attends at his local hospital. The hospital bought a unit and lent it to diabetics to use at home. My brother ended up buying one himself as it has to be used on an ongoing basis and it helped restore sensation in his feet and legs. I looked into it as I have neuropathy from a damaged sciatic nerve and found statements both for and against using it if one has cancer.

I'll echo what some of the others are saying re: a few points on the CA 27 29 is generally not a big deal, could very well be noting.

I do want to add, though, that for some people, myself included, the tumor markers are very accurate, so my doctors and I do watch them closely not to drive treatment decisions but more for things like scheduling scans, e.g. if my tumor markers are stable and I want to delay a scan a month or two, great! If markers rising, get the scan early...

Kimr2081 profile image
Kimr2081

Wow 30 years. That's amazing. My doctor just uses the markers as a tool and relies more on the scans. I was on Ibrance and Letrozole also but didn't work for me - in fact the hormonal therapies don't seem to work for me so I am now on Xeloda which is an oral chemotherapy drug. I have my first scans next week since starting it. The drug is not horrible just some annoying side effects with my feet and hands. We are here for your wife if she needs us and you too. It's a struggle that we are all trying to manage and the support here is awesome.

Rxshell profile image
Rxshell in reply toKimr2081

Scan came back stable. All good. Nerve racking waiting . Thanks for response

Kimr2081 profile image
Kimr2081 in reply toRxshell

Yeah!! Keep good thoughts for my scans next week.

Red1246 profile image
Red1246 in reply toRxshell

Excellent! Stable is very good I was told by my onco. Congratulations!

Sister3nkc profile image
Sister3nkc

I wish your wife well.

Stage 4 breast cancer survivor here with mets to left lung. I have been on Ibrance/letrozole combination for almost 4 years. My tumor markers fluctuate slightly, but are very stable always under 30 since 3 months after starting the treatment. Your wifes tumor marker change seems mild. So, is there something else going on besides the tumor markers being elevated? I want to tell you I have always been told to look at whole picture, the tumor markers are just one thing to look at. Also, i have heard of patients with tumor markers being in 1,000 - 2,000 range, or higher! My oncologists is never concerned with slight elevations. When deciding treatment steps, one must look at everything. How are your wifes scans? Are there other symptoms of progression?

God bless.

Rxshell profile image
Rxshell in reply toSister3nkc

All good. Pet and ct came back stable as before. Still nervous wreck till we heard and received call at 7am yesterday. I have read that ca numbers don’t always mean spread. Thanks for the encouragement

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