So I know I should be happy, my tumor markers have dropped every month since May, but one has only dropped 50 points and the other 68 points in five months. I’m at 422 and 169. This is really the only way we can tell anything because lobular sometimes doesn’t show on scans, which is me. Has anyone had their tumor markers drop slowly?
Also, when I was at the doctor’s yesterday, I was talking to the phlebotomist. I was telling her my daughter was going to be 30 next month. She said she was 36. There was another patient who said, you’re just youngins, I’m 78. I didn’t even bat an eye. I said, boy, I hope I live that long. Lol. I didn’t even think about it until I was home later. I didn’t look at her after that, so I don’t know how that made her feel. Oops. Im 58, so I would like another 20 years. 😊 I need a filter on my mouth.
I have been in treatment for about a year and a half and I never wanted to know or needed to know what my tumor markers were. My onco (and from what I read others also) have said that tumor markers have no bearing on the cancer (I have lobular also). So never once did I ask or been told what they were. I said if it doesn't really make a difference, that I don't need that extra info. I just need the important facts.
Last time I was at the onco (about three weeks ago) I looked her up (I was bored) on the cancer center directory was was surprised to see my onco was 64 years old. I thought she was much younger. I am going to be 60 in January and I think everybody is younger than me.
So she comes into the room to speak with me and I tell her I was shocked to see online that you were 63, I thought you were alot younger, but now that I am sitting closer to you......(and then my mind heard what my voice was saying and it just closed.) I thought OMG....I just insulted her without meaning to. (She was classy and let it go).
Does your cancer show on a scan? This is the only way besides biopsy that we are able to see if meds are working at this point. How do you know if meds are working?
I had to be off Ibrance for about four months (was still doing the falsodex) bc the damn Ibrance comprised my immune system so badly I developed an infection that I had gotten in the past that antibiotics would knock it right out. But because that damn Ibrance (and I was ONLY on it for three cycles) comprised my immune system, they put me on five weeks of antibiotics and it was getting worse. So I had to have tunnels cut in my upper inside left groin area and it was a mess. I was told the recovery would be excruciatingly painful and it was. I was on percocet three times per day for about three months. The large holes in my leg were not closing. I had to have a nurse come to my apt. every day because I could not see it and I could not put the medicine in and wrap it. I think when my onco still seen a large hole in my leg, she realized then that she said I am not putting you back on the Ibrance. Your wbc was way too low. I don't know why she didn't think of that before (which is why I am considering finding another onco primarily because of that.)
So before I was put on any meds, she set me up for an ultrasound. I went and the tech did it, went to show the radiologist doctor and came back and did it some more and then the tech told me the radiologist doctor wanted me to have a mammogram so I did that and then I was sent back to the ultrasound room where the tech did more looking. I didn't even bother asking the tech what was going on bc I know they cannot tell me but I knew it was something. I was not scheduled for a mammogram and what was the point.
Then the radiologist doctor came in and told me they found a new cancer tumor in the same breast far from my original tumor. I then was scheduled a few days later for biopsies. I had no idea you could have two different kinds of cancer in one breast. But I lucked out because the tumor had the same characteristics that my original tumor had (Silver lining
So I thought this CT scan was to check to see if it had grown or changed bc my onco said we would have to keep an eye on it. Then I found out the CT scan was just to see if the cancer had spread and they found two holes in my spine which they said was from the breast cancer. So now I have an additional injection to take for that and was told to start taking the calcium bc my body had very low levels and the cancer could make my bones brittle. I was just surprised that the CT scan did not show anything about the new cancer tumor.
So I will find out before my next visit bc now she is going to schedule a ultrasound of my breast before my next visit and said we would keep an eye on my spine and check again during my next CT scan now in two months.
So basically it was another injection. I feel no pain. As long as I feel no pain, I am good.
So obviously another cancer tumor formed during the time I had to be off the Ibrance (hated that med and annoyed that my onco realized AFTER that my wbc was too low after I went through surgery and hell). So another ultrasound to see if my new cancer tumor has changed. I had no idea (which is why they did the biopsies) that you could have two different kinds of breast cancer in the same breast. I learn something new every visit.
Oh, goodness. You’ve been through a lot. That sounds awful.
So yours show on scans. Mine does not. I know some doctors do tumor markers and some don’t. My neutrophils are in the tank right now, and I had to take time off Ibrance when I was on 125 mg. I’m on 75 mg now may have to take an extra week off.
My onco had me on 125 mgs. This was my first experience with the heavy duty meds. I never had chemo or radiation. My week off was scary. I felt like death and thought this cannot be normal to feel this bad. And then in the third week the fatigue started and it was nothing like I experienced. I started taking naps 2 times a day and I thought No, this is not going to work. I do not understand if my wbc was so low (and I had no idea that it could be lowered) why she didn't take me off it immediately and thus I could have avoided the four months of intense pain and surgery and the horrible scars I have there now.
I am thinking of switching over to Sloane Kettering since I live in NY but I hate the thought of starting all over again.
She kept you on that same dose for four months? Mine won’t let me stay on if I go below 1.0. That’s why I have a feeling I’ll be off again next week. No wonder why you got such a bad infection. You might be best to switch. Better to have to start over again than to just stay because it’s a pain to switch. I would if I wasn’t happy with my oncologist.
My oncologist wouldn’t clear me for surgery until my neutrophils got above 1.00- this was accomplished by lowering my ibrance from 125mg to 100mg. But then I got blood clots in legs and in lungs so now I have to recover from That before completing my reconstruction surgery- always something!
I have CT scans every 3 months and ultrasounds. My onco said the tumor markers have no bearing on whether or not a cancer med is working. Others have been told the same thing from their onco. I had to go off the Ibrance for several months (I Hated Ibrance bc it completely comprised my immune system and something minor became an invasive painful surgery and recovery and took my body four months before I was able to go back on cancer meds.) I had though been taking the falsodex injections only. Before I was going back on meds, my onco THEN decided that my wbc counts were way too low on the Ibrance (she decided this since they had to cut tunnels in my legs when gaping holes in my leg were not closing as they should.) DUH...would have been nice to take me off once you realized that.
But before putting me on new meds, I was sent for an ultrasound on another day. I had the ultrasound, the tech went back I guess to show the radiologist doctor, then came back and did it some more and then we back to rad doc and then was told they needed to do a mammogram (and at this point I am realizing something is not right...why are they doing a mammogram but I didn't question the tech since they are not allowed to say anything anyway and then they put me back in the ultrasound room again. This time the radiologist doctor came in and told me they found a new cancer tumor in the same breast but far from the original tumor (and this was after being off Ibrance for only four months).
I had a CT scan about two months ago and they found two holes in my spine which they say are caused by breast mets. My onco said they seem stable and we will wait until next CT scan (every three months I get one) and in the meantime now, I have another injection xygeva for the bones and also told to take calcium supplements.
After they found the new cancer tumor after my ultrasound, I then had to have two biopsies again (I'm thinking I did this already.) I had NO IDEA that you could have two cancers tumors in your breast that are totally different types of cancer. I was dumbfounded so they had to check to see what the new cancer tumor's characteristics were but luckily it was the same type of breast cancer I had been diagnosed with. My onco is going to schedule another ultrasound to see if the new tumor has grown or changed. I was just shocked to learn you could have two different types of breast cancer. I asked her what the worst case scenario would be and she said if it was a triple negative breast cancer, then I would require chemo and radiation (and I thought I am NEVER EVER doing chemo).
I feel fine except for the expected fatigue and bouts of severe diarrhea with my new med Verzenio. I could NOT handle the 150 or 100 mgs. (twice per day with no break) so am now on the lowest dose of 50 mgs. twice per day.
At least on this I know how I am going to feel day to day. On the Ibrance, some days I would wake up and feel fine and then the next day like I was beaten in my sleep with a bat. I hated not being able to make plans or not knowing how I was going to feel although I know it works very well for many women.
As long as I am not feeling pain and I have some quality of life that I can still take care of myself, I am good. If and when it gets to be extremely painful or the side effects totally compromise my life, that is when I will decide no more meds or treatment.
I do follow my tumor marker and after the initial big drop it has slowed down. but as long as it continues to go down instead of up I think it’s good. How are you feeling? My tumor marker in May was about 1500. Now it’s at 534. Still a ways to go. I have cancer in my bone marrow and the marker is my only sign things are going well without having a biopsy done.
I don’t think the lady who’s is 78 was upset with you. I’m 60 and I would have felt the same as you! ❤️
Hi, SunshineBoss. I'm feeling good. I haven't really felt sick since the beginning, I have had anemia since last October and early satiety and weight loss that drove me to find out what was wrong. I spend every day just thinking about feeling good, so I don't dwell on the future or what's to come. I hope you're feeling well. I still get full easily, but I'm going to base how I feel on that because I am actually able to eat more than I was able to in the beginning. I will also base it on how quickly I get full. If that happens where I take a few bites and get too full again, I'll know something is up. That’s a nice drop on your numbers. Let’s hope we both keep trending downward.
My ca 27 29 went from 900 in aug to 2300 in oct had a ct Monday getting results tomorrow hard to wait called them everyday no results yet will find out tomorrow I feel great so can’t imagine anything wrong will update tomorrow
Oh, gosh, Library2019, I can’t imagine how scary that is. Yes, please post your update. I’m thinking of you. I’m glad you’re feeling good. That’s most important.
It seems we are all different. Some want to know and others are okay not knowing. I’m one who knows every blood reading that comes out. Since it’s my only way to gauge how I’m doing, that’s why I want to know.
I think it's important to know that tumor markers are not precise! Since they are numbers, they sound more specific than they are. A change of ten points can be totally meaningless. I've had metastatic breast cancer for 15 and a half years and during a long periods of stability, my CA27-29 bounced around alot, within a range of about 50 points. Some of us never have numbers above the normal range and some of us have high numbers all the time. Things besides stable cancer cells can impact the numbers--often TMs go up early in treatment as dead cancer cells confound the test. Some oncs don't do them at all because they aren't that reliable and can make us really nervous. Some oncs only use them with patients who have bone mets as bone mets can be hard to keep track of--healing bones and progressing cancer can look very similar on scans. Until about a year ago, I had the same very experienced wonderful onc and she told me that she pays most attention to how I report feeling, scans next and TMs a distant third. She retired and the younger onc I have now often doesn't order TMs. My TMs have been rising gradually for the last five years or so but scans are stable and I don't have symptoms from the cancer, except fatigue. I think it's important to keep the big picture in mind. If we can still enjoy many of the things we'e always enjoyed , love our family, apprecaite music and chocolate, those are the important things, not the number from a TM test! At least believing that has worked for me.
Sandra, I have been on Celebrex for arthritis since before cancer--it may be preventing me from feeling some pain in metty bones, who knows. But I know that I have been lucky in so many ways! 15 years is a long time to have survived, and without cancer pain is amazing! My grandmother and a first cousin have done extremely well with other cancers, too, and my onc and the genetics counselor I spoke with suspect we have some genetic thing that helps us keep cancer cells under control . I sure wish we could clone it and give it to everybody with cancer!
Although I totally get where you’re coming from, tumor markers are the only way to see if the meds are working for me other than biopsy. My cancer is not showing up on scans. I wish I had a better way, but I don’t. To make a long story short, it was thought years ago that I had multiple myeloma due to the fact of what a radiologist thought were lesions on my spine that he saw on an MRI. That happened to me in 2013 and 2016. I had a bone marrow biopsy, and it was negative. They did my tumor markers in 2016. They were in the 70 and 80 range. If I had questioned them about why they were high then, who knows, I may not be Stage IV now. I don’t rely on them totally but must rely on them somewhat since it’s all I’ve got unless I want to have an endoscopy and biopsy every time I turn around. I do rely on how I’m feeling first and foremost. I trust my oncologist also knows that this is the best indicator for me since we are all different. It seems we all have our own opinions on them. I’ll keep the opinion I have and move on.
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