Hi All ~ I'm a senior (80 in April) recently diagnosed with stage 4 MBC. Chose not to do Chemo or radiation. I'm starting third cycle of Letrozole 2.5mg and Kisqali now 400mg/day down from 600mg after first month due to low Neutrophils.
My question is how concerned should I be that my Ca 27-29 went from 50.6 to 60.6 in one month?
I feel great and have no side effects from my meds (other than the low Neutrophils which are now back to normal). I'm scheduled for a Pet/Ct Scan in 1 month.
Any thoughts would be greatly appreciated!
PS - I'm a retired RN so I kinda know stuff but this is a whole new ballgame ~
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Zoli123
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after 3 yrs of hypervigilance and anxiety about results that go the wrong way and trying to proactively stay on top of the situation, i very slowly came to mostly disregard the results unless there’s a clear trend over several months (unless it’s acute problem when you do need urgent help ). Anxiety is the double whammy as it impacts on the immune system that is dealing with the cancer. Let the medics and their medicines carry the burden of monitoring for you whilst you distract yourself with living your best life and enjoying it and allowing yourself to even forget you have cancer. Its taken a good while to adjust my mindset and I learnt from my daughter who has recently shown me there could be a different way to manage this stuff. Easy to say, harder to do and the best solution as ever is to let your instincts guide you.
My daughter (who's a NICU nurse) sounds like yours. She's full of joy, laughter and SMARTS. She understands the "situation" and all that that entails but we always have an uplifting time when together. We don't like the C word and because of my little Grandaughter we now always refer to it as "My Situation". 😛
I have stage 4 MBC. I switched from letrozole to tamoxifen as it weakens your bones. I fractured my knee and foot at the same time. I have been on again off again on Ibrance 75mg since 1918. When my tumor markers shot up to 300 I went back on it. Tumor markers can jump all over the place but apparently now they are paying more attention to them. If they keep going up then that is something to be concerned about. Mine now are at 40. My goal is to get to 36 NED.
Glad to hear about those tumor markers…I’m wondering if you are taking bone strengthening meds that also fight cancer cells in the bone…I suffered a fractured ilium when I stopped the zoledronic acid …I’m back on it. Best wishes!
I’m 9 months into MBC. My CA 27.29 has always been wonky. It was 13 when I was diagnosed stage 4. With my treatment of Anastrozole, Verzenio and Xgeva, my most recent PET shows no evidence of active disease (NEAD). My CA 27.29 still moves around, which makes me nervous, but inflammation caused by illness or by vaccination can cause it to rise, so I’m trying to not focus on it too much when it goes up, as it is not a single indicator.
welcome to a family that is wonderful but not wheat you had counted on joining.
My oncologist ran the 27.29 for several years and also the 15.3 we discontinued the 27.29 because it s results paralleled the 15.3 and was more costly. Mine would jump like that but she did not get concerned because in 28 days it would slide back down.
My concerns are massive increase or steady climb over several months.
My wife, who has stage 4 Met Breast Cancer that has spread to her bones and is Terminal, sees here CA 27 29 and CA 15-3 go from 250 upwards to 880, then when another Cancer med is tried, such as Xeloda, those go back down again to the 200's, And this is the point we want to make, her last two Pet scans shows the Cancer is gone, as close to being in remission as told to us by our oncologist, and not showing up on the Pet, she still has cancer, but it's no longer showing up on her Pet, even with her CA 27 29 in the 200's, so please don't worry about your CA number being 60. And be sure to have a Pet Scan and monitor. Prayers being sent to you to win this battle.
I hope you don’t mind my comment here… it comes with the best intentions and much caring. I’ve noticed in all your posts you say that your wife is “terminal”. Well, we are all terminal — those who have cancer and those who don’t. Many doctors and many of us here view our MBC as a chronic disease. Being present to life every minute of every day and living with hope is a way many of us deal with cancer. And it works! It might be helpful to your wife in both physical and emotional health not to use the word “terminal” to describe MBC … and I think many oncologists and cancer researchers will agree. Prayers and best wishes to you both.
I sometimes say I have terminal cancer. It is probably more accurate to say "incurable." It is not killing me yet, but I will have it until I die. I think that is what UtahSara was saying, perhaps not realizing that we are all in that boat if we have Stage 4 mbc.
The tumor markers work differently for everyone. I see here someone whose markers are 200 and she is NEAD. The CA 27-29 levels are diagnostic for me. When they are high over a few months, I get a PET/CT. The PET shows progression when my CA 27-29 is high, and 60 is high. Mine is 66 now and I am getting a PET in a few weeks. At that level, there is not a huge rush to get the PET, but we do need that confirmation.
Yes you are right on all counts., Tammy. Markers work differently for everyone. My initial diagnosis had ca27-29 at 60. It climbed for two years, all the way to 1389 but is now down to 54 and my onco is ecstatic. When the numbers were traveling down, he even postponed the next PET til April —6 months vs 3. Also, i think it’s about trends, as others have said.
Yes, that is what my oncologist would have done. We kept an eye on the markers for three months. Didn't shoot up, but also did not go down to normal. So the regular three month schedule for the scan. If they had shot up, I would have had a scan last month. If they had gone down, she would have waited. Every time things have looked good, however, she has extended the PET to six months, and every time I have had considerable progression, so I am wary, especially since the 27-29 being in the high range have always augured progression.
HiI've mostly had low 2729 markers. I think at the beginning they were in the 60 range but they have gone down to the 20-30 range and pretty much stayed there. I was concerned in the last couple of months when I saw that they were slowly rising. a couple of points. I think the highest they went to was 36. But because they had been in the high twenties before, I was concerned. My new oncologist said that she tracked my markers in correlation with my CAT scans and bone scans. She felt that there never has been any concern because when the tumor markers went up slightly there was no sign of any spread on any of my tests. So she said that she's not going to check them anymore. I find that interesting
This is my exact situation. My markers are now at 52 been going up since September. First 10 points then 20. Scan shows a new skull met and flare ups on some preexisting bone areas. It is very scary as I'm still on my first line of treatment.
Yes, for some of us, these relatively low ranges that are above normal are indicative. I am on my sixth line of treatment, and my markers are up, and I am assuming I will go on my 7th if the PET confirms the 27-29. So I am rather envious of your going to merely your second!
Almost two years is a good run on Ibrance. I know it is a shock, and one wishes one got more -- as some people do, although others get much less -- but that is above the median time on Ibrance. That is what I got. Really, though, it was the fulvestrant I was on at the same time that worked the magic. As people kept saying to me, we are lucky there are more and more alternatives to try. I am on a treatment now that was approved two years ago.
I do recommend that you have a genomic test to see if anything has changed. That can also suggest what treatments to try next.
Our oncologist, who has been treating my wife ever since she was first diagnosed with Breast cancer in 2017, told us in the summer of 2024 that she now had Terminal stage 4 Met Cancer that has spread to her bones, and we should be prepared for her to possibly live only 6 months to a year, this while handing my wife a box of Kleenex, while being told there is No Cure for her condition AND over time, They will exhaust all possible treatments....so far, we have beat cancer back, as she has lived 19 months with this latest diagnosis, and the Xeloda Treatment she is currently on has shown all the cancer tumors have vanished on her last 2 pet scans. Over an 8 year span, with of all the work we both put into research, diet and exercise, but also the 10 surgeries, 35 external radiation treatments and the recovery time, the battle continues. She is not kidding herself, her friends or family, and we embrace each day as a gift, as some people we know came down with various types of cancer and have sadly died withing a few short months, mainly because they did not have the support structure we have decided to embrace. Yes, "Incurable" may be a better description, and I am sorry if my wordage offended anyone here, it wasn't meant to do so.
It very much depends on how your oncologist frames it to you when you receive the mbc diagnosis: as treatable but not curable (like a chronic disease), or simply incurable with treatments of diminishing effectiveness, or terminal -- to describe the same set of facts. My oncologist is like yours: she prefers to put a negative spin on things. She chose the second option. Yours seems to have taken the third.
What seems egregious, inaccurate and unnecessary to me is your wife's onc predicting her lifespan, and such a short one. Not helpful. Not nice. Not true.
I didn't want to know, but my oncologist misunderstood a question I asked and said casually, from her office doorway, "Oh, you want to know average survival? Five years." I am now in my sixth year, and feeling and looking quite healthy, although the cancer is progressing and the treatments are working less well (I was NEAD on the first two). I have lost three acquaintances to mbc, people I knew before any of us had the diagnosis, and one I met here who became my closest friend, so I am aware of the possibilities, how it can turn rather quickly -- but I think our oncologists could be more helpful if they gave us hope instead of doom.
It somewhat depends on how the oncologist frames it: as treatable but chronic, or incurable or terminal. My oncologist, who has an unfortunate approach, is like yours. She puts the most negative spin on the same reality.
It is giving your wife six months to a year that seems particularly brutal, unnecessary and unwarranted. (My oncologist did not give me a life span, but one time I asked her a question she misunderstood and she answered that average life span after diagnosis was five years. I didn't want that bit of information, and the nurse practitioner said it included people who could not access the newer treatments.)
I have lost four friends to mbc as I head into my sixth year, but I am still hopeful that something will come along, and I am seeking out clinical trials.
Very sorry for the loss of your friends, and we also share many friends and family who have passed because of this same disease. When my wife and I were told of her new condition as to Metastatic Cancer spread to her bones, stunned after hearing the latest results, as we were leaving the office, the Dr's nurse, who has always been there through the early stages these last 8 years, told us " well, you'll for sure see your next Birthday in 6 months".....we were floored, and sought out a second opinion, in which we were told everything we were having done is exactly what they, the 2nd opinion Doctor, would also prescribe. So we stayed put and 18 months later, have clean pet scans.....for now.
Good. So it was the nurse? The nurse practitioner for my oncologist is more of a cheerleader -- but they do step in it! I was thinking of leaving the oncologist for someone in the same practice I find much easier to talk to. The NP was encouraging me to stay. She said, "Some of her patients even live 10 years!" Since I was well into my 6th year, that wasn't so cheering. If I am one of the rare ones, I get maybe a few more years? I guess these deadlines are hard to hear.
But bone only is good! Generally get much more time, and clean scans -- that's the ticket.
Well yes, the prognosis from both Oncologists is that over time, each Cancer treatment, be it oral tablet or infusion will only last so many cycles, and in time they may run out of possible effective treatments. In my wife's case each different treatment is only lasting maybe 6 months before seeing an increase in 15-3 or 27 29 CA markers per blood work every three weeks. Those along with her Pet Scans every 3 months now compared to every 6 months a year ago. So far the Xeloda is working the best of all she had tried over the last 18 months. Sadly, the Xeloda will only work in her case for maybe another few cycles, then on to another type of treatment. As to social events, with her low Blood Platelets we have to be careful around anyone who may be ill, I almost lost her last summer as she was put in the ER after seeing friends who did not disclose they were ill when they came by to visit.
I keep wondering what they are missing when different treatments are effective or not effective, or are effective for different lengths of time, for people who have the same type of mbc in the same locations. My oncologist said treatments keep failing me because my cancer mutates quickly. But when I get a genomic test, there are no mutations -- well, last time, ESR1 -- but not every time.
I once looked at what Dana Farber had on the issue of resistance. They said there are many different reasons for treatments to stop working. I have to look at that again sometime. It was complicated. There was one article from DF that was straightforward, however. I tried to give it to my oncologist. The nurse practitioners I spoke to before my appointment grabbed it and copied it. My oncologist wouldn't look at it. Maybe she already knows. But it seems mutations aren't the only answer, yet that is her only explanation.
Still -- bone only is more survivable than other locations.
Yes bone only Cancer is more survivable, and my wife has a PIK3CA mutation too. The Cancer had spread to my wife's liver, but Xeloda has removed 100% of anything the Pet would indicate 9 months ago as Cancer, including her liver and skeleton. Xeloda does cause liver inflammation as a side effect, which could also cause AST, ALT blood results to rise along with the CA Markers, we hope to continue Xeloda, but the next Pet scan will dictate what step to take next.
I absolutely agree. Im managing my cancer just as someone with severe arthritis manages their chronic disease. I cannot abide the phrase'fighting cancer'. I manage it with the help of my oncologist. My tactics are to keep one step ahead by always knowing what treatment is next when it recurs and ensuring there are no unnecessary delays. I don't think about cancer from day to day. I think about what social event I have planned and as one event passes I plan another!
I've been on the tumor marker roller coaster with mine climbing over the last year. Had a bone scan that made me very nervous. New Mets and flare ups. Saw my oncologist yesterday. She still wants to do some more tests before making changes. I've also been having back pain but she doesn't think it's related as the pain is getting better not worse. It’s easy to freak out but if you have a cautious and thought full doctor they will move through this carefully. I wouldn't worry. Also tumor markers can go up if you have dying tumors. I'm learning from others to try to stay calm until a medical expert tells you there is a reason for concern.
Are you on bone strengtheners xgeva or alandronic acid to minimise risk of bone mets. If not, is worth asking onco’s- there are risks as ever so it’s often a case of weighing one risk against another
It is a such difficult choice to make... I'd had a bone infection in my jaw before my first ductal cancer diagnosis in 2019 (right side) and so when they suggested it for the new pleomorphic lobular in left side that happened a year later, I was so so anxious. My mouth is full of metal fillings, 30 yr old crowns and gaps. The risk increases every year from 1% to 7.3% after 3 years. I took it and luckily have been fine to date but there are people for whom it hasn't been fine and that's the thing about risks. No-one really knows yet who is at high risk of jaw necrosis/broken femur and for whom the risk outweighs the benefit of minimising bone mets. More research is definitely needed.
I also think that as mbc patients are living longer people are becoming aware of the LONG TERM side effects. I'm still keeping it as an option, but I currently have little to no pain, so am not using these drugs currently. Surprisingly, my oncologist is very understanding. My dentist who I really trust and sees a lot of cancer patients also supports my decision. It's so hard to make these decisions.
i'm slightly more worried now as my lovely dentist, the woman who has preserved my awful teeth for >15yrs so well, has just retired. I was hoping I'd peg it long before she retired. So I'll keep going with the high strength fluoride paste and the improved dental hygiene and hope for the best as the effects may be worse when coming off! I rejected letrozole first time around as it seemed at the time that the risks of that for me with comorbidities outweighed its benefits. But then ended up with it anyway! I guess we just have to accept and live with consequences of our choices ...so it's a very individual thing!
Not very concerned at all. In the UK tumour markers for breast cancer are rarely used past diagnosis. Scan results are used to identify stability/recurrence.I was diagnosed stage 4 over 6 years ago. I'm still going strong.
I see a top lobular breast cancer specialist at MD anderson. He is on the very cutting edge of research and science with metastatic breast cancer. His advice to me was not to spend any time worrying about tumor markers. He doesn't use them. Doesn't believe they are accurate. And sees them as causing more stress than they do help. Just for what it's worth.
so interesting. My dr is now using signatara test. Takes along to get results but she seems to think it is more reliable. I think part of the idea is to see tumor markers go up before they show up as tumors. It will be interesting to see how it works for me.
Oh, I thought it was too expensive to do signatara often. I have blood drawn every month, so see my tumor markers (and they do seem to be accurately diagnostic for me). I think the Signatura can detect progression, or the probability of progression, much sooner. Can I ask where you are receiving treatment? I might suggest this to my oncologist.
I'm curious what he does consider. In addition to rising tumor markers scans show some progression but I'm feeling fine and don't have the bone pain I had when I was first diagnosed.
For me, markers have never reflected what scans show so we stopped doing them. So many things other than cancer can cause markers to rise and fall. Congratulations on being 80 period, live life to its fullest!
Thanx fancydog. I must say I don't feel 80 and compared to my neighbors (I live in a retirement community) I don't look 80 although I often joke about whose old persons hands are those when I look down! 😛
Hi Zoli123, I'm in my 2nd year of letrozole and Ibrance and the ? CA 15, (I forget what the marker is) markers are nearly always 40 , the scan show uptake in various bones but everything has remained stable. I don't think 10 points in a month is any pattern or trend.. sometimes markers go up with new meds or a change, I read but message your oncologist and she or he will put your mind at ease. I wish you years of stability on your regimen.
My oncologist explains the marker as one piece of the puzzle to be evaluated. It's about the trends over time. I agree with another reply that the stress about results disapates over time. My wbc is always below normal but if I am staying on my trend, we don't worry about it. I have joint pain from letrozole that is helped tremendously by weight lifting and exercise. Walking alone wasn't helpful. The workouts also help some with fatigue. Keeping sugar and caffeine at a minimum also helps these symptoms (for me!). Xo
I really do not enjoy exercising, with the exception of walking/hiking, but I look at it like medicine I need to take for my best survival. I found a studio connected with a physical therapist that focuses on us over 50s! A true game changer for me.
I started taking a dance class, not an exercise class, for old people, and have become addicted. We do warm up with strength and cardio and stretching and balancing, but then we choreograph and make things up and play. Carrying your dog is actually good, though -- for you; the dog might need more exercise.
I am 73. My first BC was 2001 and metastasized in 2013. April 2024 my CA 27-29 were 740. I started Orserdu then. They are now at 186. Good luck on your journey.
Yikes, 2001? Please keep me posted on your , as I call it, situation. I felt a lump in my breast over 10 years ago but didn't persue. It gradually started to show up on my skin (breast). Because I had breast implants so long ago I thought it was just scar tissue. Anyway, so here I am starting my first treatments. Thank you so much for your attention today. Ca 27-29 going from 740 down to 186 is the best news ever!!!
my 27.29 is over 500. I get it taken every week. My docs don’t fret about it. I’m on chemo and find it easier to tolerate than the pills. Just very dizzy. Reenie
Tumor markers go up and down for a variety of reasons, not always due to cancer. Tumor markers are not reliable for many people. My Tumor markers have been good indicators of progression. I am happy that my tumor markers are reliable because it lets me know when a treatment change is coming and my team is on top of it. At my clinic Oncologists are concerned with increases of 25% or more. They use markers directionally. They rely on scans and reported well being. They pay attention to symptoms such as severe fatigue, headaches, pain, difficulty breathing, loss of appetite, lumps and fluid retention/edema along with other symptoms. While it is scientifically known diet and exercise will not cure Stage IV cancer, trials show they help mitigate the side effects and may slow progression. I eat nutritious foods, exercise, and enjoy life with gusto. I have spent the last three and a half years focused on living and grateful for the time. It is truly remarkable how long Stage IV Breast Cancer patients are all living with a good quality of life. In the last year and a half I have had four friends in their 50s and early 60s unexpectedly die and I was the one with the terminal incurable illness. Keep living.
Dana Farber has an excellent presentation on Tumor Markers through their Embrace program. It is posted on YouTube and called Biomarkers for Treatment and Progression
You are sooo smart and informative. So much excellent information. At my age, a few more age sounds great. At 30 or 40 not so much. A few more years sounds at 80 life wonderful.
I have had Stage 4 Met Breast Cancer for 9.5 years now. Taking Ibrance and Letrozole. I have had 10 point fluctuations maybe 9-10 times. I log after every set of labs what was going on in the time frame as inflammation increases tumor markers. So when I hurt my shoulder, they spiked, when I had a UTI, it did and most common (for me) to make tumor markers spike is stress.
Have you always been on Ibrance and Letrozole or did you have to try others as well? I just started on Kisqali/Letrozole 3 months ago and am wondering how long it will last. Only low neutrophils which has been corrected by lowering Kisqali to 400mg/day, no other side effects at all!
I have never taken anything other than Ibrance and Letrozole. I started out on 125 mg of Ibrance and after 4 months dosage was decreased to 100 mg. I always ask Oncologist to order the capsule vs the tablet (which is so hard to get opened) and has an awful smell (to me), I also found that my tumor markers stayed lower when taking capsules vs tablets. I spreadsheet all my labs with comments so we can see any correlation to what was going on that month to effect tumor markers.
You want to stay on a drug as long as it is working. I have been on Ibrance/Letrozole for almost eight years. Kisqali came to market after Ibrance. My guess would be that is what my oncologist will put me on when Ibrance no longer works for me. Kisqali is a great drug. Blessings to you. Hannah
Oh Hanna, that is just what I hoped to hear! Being almost 80 (Next Month). If I get even a few more years I will be soooo grateful and consider it a success! If I were young, not so much but at my age it is a MIRICLE!!!!
Zoli,I just turned 79. When I was diagnosed in 2017, it never occurred to me that I would live this long. We are old, but I am so hopeful that a cure is on the near horizon for younger folks. Blessings all, Hannah
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