Quick question. I was diagnosed in June 2018 with Stage 4 MBC to bones. I started on Ibrance and Letrozole and all was good until March 2019 when Cancer Markers starting going up. My Onc did pet scan and CT scan and the cancer has gotten a little worst still in the bones so my onc took me off Letrozole and added Faslodex. the next 3 months cancer markers have almost doubled so I have an appt next week with the onc to discuss other treatment options Has any else have this happen to them
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Lilian848
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This happened to me..my markers crept up gradually over about six months
I have mainly bone mets but one solitary liver nodule...anyway the most recent ct scan showed progression of that liver met although bone mets stable
So instead of changing me from Ibrance and letrazole to a different medication..I’ve had radiotherapy to the liver...just starting to recover from that..not nice side effects!!!
I’m glad to stay on the same meds as I cope reasonably well on them
Sorry not much help but there are other things to try...just finding the right one for you
You don't mention which tumor marker or what the numbers are. TMs are not reliable for all of us, and they can rise early in treatment when the new med is working and killing off cancer cells as those dead cancer cells can confound the TMs. Some oncs don't use TMs at all, some use them only for those of us with bone mets only as they can be hard to track on scans, and those who do use them generally only use them to suggest that it is time, or may be time, for scans. If your onc is not a bc specialist onc, one who sees only patients with bc and does research, you might want to do that, at least for a second opinion. In the US, the top cancer centers are those designated "Comprehensive Cancer Centers", and there are about 50 of those, mostly affialiated with medical schools. There is a link to a list of them on the home page of this group. It really is worth seeing an onc at one of those places, even if you have to travel to do it. Those oncologists are the most up to date on research, new meds, etc. Some of us with an estrogen positive bc and bone mets only live for a long time. I was diagnosed with bone mets from the get go almost 15 1/2 years ago, and you would never guess that I have an advanced cancer if you saw me out and about. I do get tired rather easily and my short term memory is not what it was, but I still enjoy life and many of the things that give meaning to my life! I do the grocery shopping, laundry and pet feeding. I still cook dinner about 4 times a week and pay the bills. The first year or so with this lousy cancer was the hardest on me emotionally--I'd get a knot in the pit of my stomach and my blood pressure would go up, just driving into the cancer center parking lot! I've gotten over that, and actually the most stressful thing in the last few years was my onc's retirement at the end of last year! lol I like the much younger woman who I see now, but I just don't have the trust that I put in my previous onc. That takes time........ Another thing that helped me alot at first was hearing about women who had lived 5, 10, 15, even twenty years with mbc. And a few years ago, there was a 30 year survivor at the annual conference of the Metastatic BC Network. I hope you will do well for a long long time as so many of us do!
Thank you so much for that response. When I was diagnosed last year I fell apart emotionally. All I could think was I am going to die. I was devastated to discover it was n my lungs and ribs. It seemed unthinkable after 15 years from the initial diagnosis. The oncologist put me on Xeloda and told me to see a psychologist, which I did. However, it was talking to the women on the SHARE hotline and to the women on this site that brought me out of my despair. At some point I realized women can live a long time with this and even as it progresses it appears they are living a good life. I am doing well after the year and hope to see many more years. I am attending the Susan Komen MBC conference in NYC this October with a friend who has been very supportive. I want to meet some MBC women in person as this can be a lonely thing not knowing anybody with the same disease. For some reason I cannot find a MBC group in Ontario where I live. They want to lump me in with the "advanced cancer" group which includes men and that is not what I want. My oncologist was interested that I am going to attend the conference. It is time that I understand the disease more and ask some intelligent questions. At first I just did not read anything but I am ready to learn more at this point. They tell me it is a very positive atmosphere at the conference and that will be good for me.
Ruby, since it took 15 years from initial earlier stage of cancer to become metastatic, that's a good sign that the cancer you are dealing with isn't an aggressive fast growing one! Is there any chance, while you are in NYC, for you to see a bc specialist onc at Memorial Sloan Kettering? I don't remember if I have heard recently from anyone in Ontario about how easy it is to see a bc specialist onc there. Last I heard, the Provinces of Canada varied in how various medical costs are paid and what is available where. But that was quite awhile ago. Enjoy that conference! Another one that is really wonderful is the Metastatic Breast Cancer Network's annual conference. It is often in NE US. It's my favorite conference to attend as it focuses on MBC only and there are so many other women with mets there to chat with.
Thanks for that info. I have heard of that conference and will consider attending in future. I want to go to the NYC conference so I can meet the woman I have talked to so many times on the SHARE hotline. She has been so encouraging and helped me when I was in such a dark state last year. I was in bed for much of 6 months and short of breath and had 9 ribs with fractures. I was a mess and thought I would die. Now I feel close to normal and we have entertained non stop at our cottage this summer.
I do go to a regional cancer centre in Ontario and feel they are quite competent. They are closely affiliated with Princess Margaret Hospital in Toronto which is considered a leading hospital in cancer research and care. All my care so far is completely paid for by the government. However, I think Ibrance is not fully covered by our provincial plan at the moment. Other provinces do cover it. The oncologist put me on Xeloda and I responded well.
My CT scan in July showed a lymph node superior to the vena cava measuring 0.9 cm and the oncologist said she will watch it. Other nodes seen in the January CT scan are not even mentioned. With all your experience do nodes appear and disappear? Each CT seems to reflect different things I read about once and then they do not reappear the next time in the report. Then they talk about nodules. I get confused as to what they are. In January I had a small nodule in the thyroid, not even commented on in July.
oh Lilian, I know how you feel. My markers have gone up some. I have been on Faslodex also. Doc will talk with me the first Monday in August. I also would like to hear from others about other treatment options.
I was on ibrance and letrazole for 9 months and it stopped working with increased tumor marker ca 27.29. they just. changed my med to verzenio and faslodex 2 weeks ago.
Lillian I wish you well at your next appointment. So many reasons the markers fluctuate but it's so hard not to think about the worst case scenario I know. But try to relax as some people here have said worry doesn't do us any good! I'm still working on this concept myself. Takes alot of work.
A resource that was helpful to me in lessening worry was an audio CD by a psychologist named Belleruth Naparstek. I first heard it at a bc retreat the cancer center where I am treated put on every fall. Belleruth has done alot of work in the mind-body connection and developed audio work for quite a number of health conditions, from allergies to weight loss. They are sold at a website called healthjourneys and I can never remember if it is .com or .org. Her voice is extremely soothing. She uses guided imagry and affirmations. I got her "Surgery" CDs as well as the Cancer one, and listening to them a few times had "measurable results" for me as my blood pressure became normal when I'd check into the hospital for procedures, a huge change for me. Now, when it's time for anything scary, I just think about her voice and that helps me feel peaceful--weird, huh!?! Susie asked about other treatment options. One of the things I heard about during the first year or so after I was diagnosed, for those of us with an estrogen receptor positive cancer who have had a good response to hormonal treatment, with meds like Femara/Letrozole, Faslodex, Aromasin/Exemestane, Tamoxifen, having them work for awhile and then fail, was to go on a low dose of Estrogen for awhile, in the hopes of "resetting" the cancer cells so they will again respond to those meds. When I mentioned that to Dan Hayes, the big name bc onc I saw earlier this summer for a second opinion, he said going on Estrogen can cause alot of side effects......... But my long time onc who retired last December hadn't ruled it out, and she and he were friends and allies in treating breast cancer. I was diagnosed years before the meds like Ibrance and Afinitor so they have not been options I've thought much about, especially after Ibrance damaged my lungs. For those of us who were post menapause at diagnosis, a frequent sequence of hormonal treatment has been to start with either Femara or Arimidex, both non-steroidal aromatase inhibitors, then moving on to Faslodex, then Aromasin, and then Tamoxifen. I used to belong to a support group of women with mbc that was a self led group that had broken off a general bc group at the cancer center where I am treated. I met quite a few other women who had gotten longer on Faslodex than on the Femara or Arimidex they'd started off on. And for those of us with bone mets, one of the bone strengthening meds, like Zometa or Xgeva is standard. But just as we are each a unique individual with our own personality, interests and gifts, our set of cancer cells is unique and responds to treatment in its own way, so what works for one does not work the same way for somebody else. Several years ago, there was a big study in Germany with the goal of finding a very few "typical" cancer cells in each persons' MBC to help refine research for drugs that would led to cures. The study group was very large, over 10,000 patients, and the number of different bc cells was almost as large as the number of people in the study! There were several, fewer than ten I think, cells in common with in a large percentage of patients. But the results were not what had been expected and really underlined just how unique the cancer cells each of us is dealing with. I may have some of this a tad off, but I am sure the study was in Germany and that the results emphasized the uniqueness (and therefore difficulty in finding "a cure") of the cells we are each dealing with. Sigh! So, for me, I am left believing that we need to have oncs that we like, trust and respect, and from time to time see a bc specialist onc at a major cancer center for second opinions, if somebody like that isn't our own onc, and that anything we can do for ourselves to get the most out of the life we have left is the best plan! That really has gotten easier for me over time. More and more of us are living longer and longer. And I've always believed that those of us who find sites like this probably do better for longer than those who don't have the resources and the information seeking approach to cancer. Just my own untested belief!
Repurposed drugs are also another alternative. They can be taken along with the treatment we are on. I am taking Metformin, Melatonin, baby Asprin and Mebendazole for my ER+ PR+ Hers- endometroid cancer. These meds increase the efficacy of chemo and hormone therapy and even on their own, starve the cancer. I need to add statins and some supplements. This regimen is as per the metro map from Jane's book. After reading the book I did an extensive study of research papers on pubmed. At present I am taking chemo..only Abraxane along with above meds. I do wish I had known about Jane's book earlier. Maybe I could have avoided a recurrence.
Yes. My markers were increasing however, not looking at tumor markers alone we saw that on the scans the tumors progressed. It was about 8 months before Ibrance and Letrozole stopped working. We then moved to a new treatment altogether. It was Gemzar and Navelbien. An infusion chemotherapy. I was diagnosed originally with stage IV. It was discussed with me that as long as the cancer can be seen and progressing after a treatment starts I would continue to have to try new treatments that match my particular diagnosis.
I hope that you will have the best of luck with your next treatment and you will see outstanding results.
My markers recently skyrocketed.....like 300 times more than they should be???? I’ve just started Afinitor and hope that it brings them (and my Mets) back down....things look good so far...my lymph nodes are subsiding....
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Cancer markers going up sharply, but PET scans showing NED
cancer marker 15-3
Markers
CA27/29 tumor markers?
